Bailynn

 Bailynn

This is an archive of all Bailynn’s Caringbridge posts prior to me starting this blog. If you want to find out where this all began, this is the starting point. One day I decided to write. One day it became easier to share to the masses, then to regurgitate the information in single servings. My mind needed a release, a place to share, a way to vent. Here is my heart. It is open for you to read. Once you are all caught up, the “blog-post” tab continues on with our journey.


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Tuberous Sclerosis is defined by the National Tuberous Sclerosis Association as a genetic disorder that causes benign tumors to form in any of the vital organs including the brain, eyes, heart, kidneys, and skin. It is often first recognized because of epileptic seizures and/or varying degrees of development delay.TS occurs in both sexes and in all races and/or ethic groups.There are approximately 25,000 to 40,000 individuals with TS in the United States.

Bailynn’s Tubers are currently in her Brain, Heart, Kidneys, on her skin and recently discovered in her liver.

Bailynn Suffers from epilepsy and at 15 months of age had the left-side of her brain removed to help relieve her from constant seizing. Bailynn does still have seizures and has had a Vagus Nerve Stimulator implanted to help with the control of seizures. There is nothing more heart wrenching than watching your child seize.

Her current fight is against the tubers that continually form and grown in her kidneys and liver. She has a forever battle against a disorder that has no cure and has not had break throughs medically for treatments. We continue to keep a positive outlook though the days that she suffers in pain are long and hard.

Despite all of Bailynn’s continuing obstacles she continues to be a strong and happy little girl. Though she is wheelchair bound and doesn’t speak, she tells the World a marvelous story of Hope and Courage.


 

Journal


 

June 26, 2008

This CaringBridge site was created just recently. Please visit again soon for a journal update.


 

June 26, 2008

Bailynn has less than 2 weeks till surgery on July 9th. For those not up to date with Bailynn’s case she had rods put in her back on Nov. 12, 2007 and they have slipped off the top. On July 9th she will be having the top rod portion in her back replaced in hopes that this does not occur again. We are just praying the pain will go away, she can recover fully and quickly, and that this matter will not occur again.

Thanks to all and I hope this new form of updates is as convenient for you as it is for Bob and I. Lots of Love
Bobbi


 

June 30, 2008

Bailynn’s surgery is so close again and now the anticipation is almost unbearable. It always seems better when it is just over and recovery can begin. Bailynn’s Surgery is scheduled for July 9th at 2:15Indianapolis time and is suppose to only last roughly an hour and a half. Her surgeon is going to replace the current hardware with new hardware that attaches to her spine kind of like a claw (vivid). Her current rods are a sliding growth system that would have allowed her spine to still grow some. These new rods will not allow that at all. The only growth he said can occur would we in a circular type pattern in her spine, so essentially her spine could start to rotate. Some may wonder way we choose to have this done with such extreme side effects and the error that occurred. For all that know Bailynn you may have noticed that she has filled out a bit. Since November Bailynn has put on roughly 6lbs. not to mention how much better her internal organs have been operating and the relief her lungs have had from all the pressure that the curve of her spine was causing them.

I do often wonder why Bailynn has to constantly endure such things but I have to remember that these medical practices have been placed here to help her and though some things do not go as planned there is a reason behind them.

Our Schedule for the Surgery and Hospitalization is that Bob and I will drive to Indy separately and the other four girls and I will stay in a hotel with my mom on Wednesday evening. Then on Thursday if all had went well the day before and Bailynn is being moved out of ICU my mom, the girls, and I will return home (and get our dogs out of hawk, we have 4 now if you didn’t know) Bob and Bailynn should then return home on Friday if all goes well and as planned. For all those cousins in Indy I am placing you on call in case Bob requires some assistance. We do not leave Bailynn alone in her room under any circumstances on regular occasions so this could be a small challenge for Bob being alone. Hopefully the money saved in us splitting like this will be worth it.

Then Bailynn should be home by Friday evening and the road to recovery begins. I am just hoping with all the chaos that we can help provide some sort of tranquil/ peaceful environment for her to relax in, but I do believe she loves and feeds off the constant entertainment.

Thanks again to all and I will write again soon. Bobbi


 

July 2, 2008

Pray for Bailynn. Yesterday we took our lot to the pediatrician because Isobel said her throat hurt, was coughing, and had been running a fever, Arwyn was throwing up and running a fever, and I feared that Bailynn was going to get it also. With surgery a week away that is no good.

Isobel and Arwyn have a virus which is definitely taking its toll on the girls. They are keeping very little down and Sprite is a big hit though it doesn’t last long in the tummy either. There has been a lot of teary eyes and on and off again sleeping. (The twins slept better than anyone else last night!)

Bailynn has Bronchitis and started Amoxacilin. We have to get better before next week or the surgery will have to be cancelled. I am to call the doctors office if it doesn’t clear up by Friday. Right now she just has a mild rattle cough. Bailynn takes so long to get over anything that I am just praying this will pass quickly. I am also glad that we did take the to the Doctor to try and nip this in the bud before it becomes a lagitamet problem.  I am also hoping that the babies don’t contract any of this. Thanks for all the prayers and support.

Bobbi


 

July 8, 2008

Well, the twins have ear infections, Isobel and Arwyn are still coughing, and Bailynn is a little irritable but not sounding sick.

Our family is almost completely packed for our journey north and I am always in awe at how much stuff babies need!

We are leaving around 6:00am and again Bailynn’s Surgery is at 2:15 Indy time which is 1:15 Evansville time. Then she will go to ICU overnight and Bob is going to be staying with her in the Hospital while My mother and I are going to take the other girls back to a hotel for the evening. I am staying with the other children till about two o’clock on Thursday and then heading back to E-ville. We are hoping that Bailynn will be release on Friday and that Bob can head home with her then. (Saturday at the latest).

Please pray for his journey home alone with her. She is always very irritable on the way home. Can’t blame her!!!

I will update tomorrow when I get a chance after Surgery. Thanks to all
Bobbi


 

July 10, 2008

Bailynn’s Surgery went really well. Bob stayed with her over night and she sat up a little and threw up. We are wanting to try and get her to eat today, which is always a challenge after surgery. She is swollen, much more than last time, and of course uncomfortable. Who could blame her. The other girls are doing well. Another adventure at the Hospital!! Dr. Didelot tells us she will most likely go home tomorrow. God willing. Please pray for her to eat, wake up, and have her pain controlled well with medication.

Thanks so much to all for continued prayers. Bobbi


 

July 10, 2008

Bailynn moved to a regular room. Her room number is 3018 at St. Vincent’s Children’s Hospital in Indianapolis. She is doing well. She ate lunch and dinner with Bob. She stopped getting morphine this afternoon to try and get her on the track home. She is really swollen. Alarmingly swollen!! She sat in her stroller for about an hour but is still in a great amount of pain. She really doesn’t enjoy any kind of movement at all.

Bob is still in Indy with her and as planned I returned home with the other girls. We made good time and I cried. The last time I was this far away from Bailynn was the day after she was born. Pray for me and my crazy over-protective mom ways, pray for Bob to keep strong for Bailynn, but most of all pray for Bailynn and her peace. Endurance of pain is something no child should be asked to handle and her eyes show so much disbelief that we would put her through this again.

She is however playing with her toys! God Bless her Fishbowl.


 

July 11, 2008

Bailynn is going home today!! She is still in a great deal of pain but Bob has had her up a lot. She has been sitting up in her bed and in her stroller. He is hoping to leave the hospital right after a round of pain medications so that the trip home will be a little more comfortable for her. I will then have pain medications waiting her when she gets home.

When I spoke to Bob this morning I could hear her screaming in the background. My heart just broke for her. I can’t wait for her to get home and relax in her own bed. Now we just have to set up a DVD player in her room for her to have some entertainment. I will let everyone know when she gets to leave and when she gets home. Bob is hoping around 2:30 Indy time. Thanks to all

Love, Bobbi


 

July 11, 2008

Please Pray for Bob. He is really stressed out. Him and Bailynn are on their way home but his car has a bunch of lights coming on on the dashboard. Bob is really upset about it and with little sleep he really needs to get home. His car is driving fine but all in all I do believe he thinks the car is going to blow up on them =). He is past Terra Haute and hopefully will be home in about an hour and a half.

Bailynn was doing good. She wasn’t crying or anything (I think she probably senses the stressed situation.) I have her bed ready for her, her medications draw, and a DVD player ready to go with her favorite movie. I can’t wait for her to get home.

Pray Pray Pray Thanks, Bobbi


 

July 11, 2008

Bailynn and Bob got home a little after 7:00 tonight. He said she didn’t cry once on the way home and they sat in a lot of traffic. She only whimpered a bit when he carried her to her bed and instantly relaxed in. She looked so content.

Bailynn still has not cried this evening. She only got a little upset when we changed her diaper and rolled her to her other side. Other than that she watch 2 DVD’s and drank her “fake” Boost (equate brand from wal-mart) with more gusto than she had in the last couple of days.

I heard the relief in Bob’s voice when he called and said they were in Evansville and he has been so relaxed this evening. Thanks for all the prayers. He got his shower and go to sit down and watch a lovely Barbie Movie with Isobel and Arwyn. ( He was over joyed =)!!! )

Isobel and Arwyn were so happy to see Daddy and Bailynn. Isobel sat in Bailynn’s room for a while watching “Bear in the Big Blue House” with her.

Even Bess and Charlie (the dogs) were so glad to see Bailynn home. They both sat at the end of her bed making sure she was okay but never trying to touch her. It always amazes me how much dogs seem to know.

Bailynn is still so very swollen. Like I said before it is alarming how swollen she is. For those of you that remember her after Brain Surgery and her large swollen head, it reminds me of that only on her back!

I was probably the most anxious for her return and have been elated all evening that both her and Bob are here. I am such a control freak, as most know, and it has been such a challenge to be away from her. She is such an amazing part of our lives and she truly fills my soul with such Joy. I thank God that he blessed me with her pure innocence. Now if he would just allow her to not have to be cut on again for a while!!

Thanks again to everyone and I will continue to make updates on her recovery over the next couple of weeks. The surgery is over and the hard part is just beginning. It is always a challenge to get her back to were she was before surgery to be able to go on from there.

Love to all Bobbi


 

July 12, 2008

Bailynn has had a great day. She crys so little and is getting plenty of rest. Right now she is watching Transformers with her Dad and Sisters.

She even had dinner with us tonight in her stroller. She was thrilled to have puree Tuna Salad for dinner, her eyes light up with excitement to have some homemade food.

We had to change her bandage today and there was a considerable amount of seepage and she was not pleased with us doing that. I also gave her a sponge bath and could tell that she felt much better. She didn’t even cry when I brushed her hair like she normally does.

She slept through the night last night. Bob actually woke her up to give her pain medications because we were afraid she would wake up in a considerable amount of pain.

She is such a trouper and I am constantly in awe of her strength. People often tell me they don’t know how I do it, but I don’t know how she does. Bailynn is tougher than any other person I know. I don’t know how the world looks through her eyes but I know how mine look with hers here. I am blessed to have the gift of her. May her recovery be swift

Bobbi


 

July 13, 2008

Bailynn is having another good day. We are having some trouble getting her to eat and drink really well. She has had a pretty even temperament and only complains close to the next pain medication dosage time. She has sat up again today and the swelling looks a little better but still pretty significant.

Bob goes back to work in the morning so please keep me in mind. Right now he has been doing all the major lifting and tomorrow that will be my job again. I don’t want to hurt her. Please also pray that she stops trying to scratch it. We keep catching her with her hand back trying to get to the incision (which goes all the way up her neck). We really don’t know how to keep her from fussing with it when we are not with her (AKA she should be sleeping) Anyway, always getting into things she shouldn’t =).

I will say that so far she has been crying much less that when she had the surgery in November. Our only concern other than eating right now is potty. Bailynn always requires multiple medications to help her go potty and after surgery it becomes an even bigger problem. Please pray that her pipes start moving again!!

Thanks to all Bobbi


 

July 15, 2008

Bailynn had a good day yesterday. She got to take a shower!!!! I changed her bandage while I was giving her a shower yesterday morning and there was still a lot of blood and seepage from the incision. I called and talked to the Doctor’s Assistant and they wanted Bob and I to remove a couple of stery strips to make sure the incision was still holding together. So last evening we inbarked on removing the top two stery strips (I am sure you can only imagine Bailynn’s reaction). Once I removed the top to strips we found that the incision, though covered in puss, looks great. I cleaned it off and left the strips off so that the skin could get some air and then put clean bandages over the incision again. She did cry for a while after that last night and then finally fell asleep.

My day went smoothly lifting and caring for her and Bob had an okay day back at work. There is a lot going on at Toyota right now on top of all that we have going on at home!

This morning she drank a full thing of “fake” Boost for the first time since surgery but still is not eating well. I do believe the main problem now is that she has not cleared her pipes yet! We are really hoping that we don’t have to give her an enema but it is starting to look that way.

She has sat up quite a bit and seems to be fairly comfortable. She is not really relaxing her head or shoulders and kind of looks hunched over. I believe it is because of how far up the incision comes. She is also still trying to scratch it and this concerns us greatly.

Isobel says Bailynn is feeling all better and wants to go to Turonies!! I smiled at her and told her that we will go to Turonies soon but that Bailynn needs a little more time. The little things in life that make our hearts happy!!

The Twins seem to be over their twin ear infections now and Isobel and Arwyn have finally stopped coughing. We are slowly getting back to good health.

Thanks for all the continued Prayers.Big love from the Hammonds Tribe. Bobbi


 

July 16, 2008

Bailynn had her roughest day yet yesterday. She cried a lot and nothing seemed to make her happy. She is still not eating well and would barely sleep. I laid in bed with her for a bit and talked to her and she smiled and cried. I can tell she just hurts and doesn’t feel herself but wants to. She got a good giggle out of Bess (the dog) last night. Bailynn had a fly in her room and Bob went to get “The Killer” (AKA fly swater) and when Bess sees this magical tool she knows that Bob and her are on Safari to find the Bug and eat it!!! Totally gross but so funny. Bailynn got some good smiles and laughs out of Bob & Bess’s hunt. Which was successful! Finally last night I gave her an enema and she slept through the night.

She is still quite grumpy this morning (I gave her a shower again) but she is doing much better so far. I think she is enjoying a change of scenery (she is laying on my bed this morning watching Baby Einstein!)

I also believe she is getting a little bit of cabin fever. Even though she doesn’t feel good I know how much she enjoys to just get out and do something. If she is feeling well enough on Saturday we are probably going to take her to do a lap or two around the mall.

Pipes are clear now and we just need to start eating again. Applesauce is about the only thing we can get her to eat with any kind of dedication towards completion!!

Thanks and Love Bobbi


 

July 17, 2008

Bailynn had a good day yesterday. She seemed much happier after I took her bandage off and left it off. I can only imagine what a huge sticky bandage feels like going on, staying on, or coming off ones back. She is such a trouper. Her swelling looks tons better and the incision looks wonderful. She does still have some leakage coming out of the top at her neck but I have resolved to leave it exposed to the air in hopes of helping it dry up.

She did cry when I had her sitting up in her stroller but she has out grown in leg wise and needs a new one, so who can really blame her. That is the next large purchase for her. We have been putting it off waiting to see if we can get any assistance from Insurance or Children’s with Special Health Care Needs Services. Insurance won’t cover it and we still have had no word as to if Bailynn has been accepted to receive services from Children’s! I am trying really hard to think positive but it has been over a month since we submitted her application.

Today Bailynn was woke up by Minet (puppy) and seemed glad to see her. I have been trying to keep the puppies away from Bailynn but they have been so curious as to what is going on with her.

Bailynn is still not eating. She ate 4 cups of applesauce and a cup of yogurt yesterday. She wouldn’t drink her “fake” Boost at bedtime but this morning guzzled it down. She is looking thin (thinner than normal) we can now even see one of the rods at the bottom of her back sticking out. Please Pray for her. I know you are and I know everyone tries to imagine what it would be like to be me. Sitting here writing about my first borns pain and suffering. Please understand she will always simply be my baby, my pride and joy. She was the one that started it all and my Love for her sometimes amazes even me.

Bob and I just need the strength to continue the care and financial means of caring for her, but trust me we do it gladly and with such joy. I have never thought Bailynn a burden to be endured. Keep her sweet heart in your thoughts and prayers. She is truly a miracle. She is perfection. Love and Thanks to all Bobbi


 

July 18, 2008

We are cutting back on pain medication today and so far so good. She still is not eating well but she has at least increased the number of applesauce cups she is eating. Yesterday was touch and go. There were times when she was quite herself and then she would have a little tantrum. Her swelling looks lots better and the leakage out of the top had diminished greatly. She still is sitting really hunched over and keeping her head turned to the right. She is twisting a little to the right also. I am really hoping this is just her way of dealing with the pain and not a permanent change.

This morning was shower day again and she was the last of the 5 girls to receive their scrub down. (It is a long hard job for this mama to clean five little girls, my hands are prunes!!) She didn’t fuss much during the shower and sat quietly next to me on the bed (with a lot of support) and snuggled in. She is such a sweet snuggler!

I am going to try a Hot dog for lunch with her and hopefully her daddy will get home at a reasonable time tonight. She really likes for him to feed her dinner! He has been working till 7 and 8 PM the last 2 nights and all the girls are really in need of some good quality daddy time. He has to go to work tomorrow also but we will have him on Sunday!

We go back to Indy on August 5th and will get some x-rays to see where the rods are and what they did. I am hoping that this is the last surgery for a while.

Thanks again for all the encouraging Emails, Guest book Signings, and Phone Calls. We really appreciate the love and support.

Bobbi


 

July 18, 2008

We have success!! Bailynn had a hot dog for dinner tonight!! She didn’t eat with her normal gusto but she ate it all the same. She even had dinner with us at the table tonight which has been off and on the last week. Over all she had a good day. She even played with her toys more today.

She did have one bad seizure this afternoon and I am just afraid that something will happen to the incision or hardware inside her back while she is having one but there is nothing I can do. She has only had a few seizures that I have seen since this surgery (she mainly has them in bed over night) and she flings herself forward really hard. Bob and I just don’t want any physical damage to come from them.

Other than that the day was pretty uneventful. Bob got home before 6, which was great, and tomorrow is Saturday!! Depending on how Bailynn is doing tomorrow we do plan on trying to get her out of the house a little bit.

On a completely other note. My grandfather Jim Hornick (my mom’s dad) had a stroke right before 4th of July. He is back in the Hospital suffering from multiple mini strokes and is having difficulty with his memory and knowing what year it is and such. They are currently treating him for an infection but are not really sure what is causing all of this. Please keep him and my grandmother Sue in your prayers.

Thanks so much. Love. Bobbi


 

July 19, 2008

Bailynn’s pain medications have been cut in half and by the end of the day she will no longer have any Tylenol with Codeine. She is tolerating it much better than I expected. After the last surgery we had to get another round of pain medications but I think she is going to do fine with just plain Tylenol.

The only time she really complains about her back is when I am trying to dress or undress her and when she is moved. It is hard to get shirts on and off with the incision so high up on her neck. I feel like I am going to hurt her so I take forever to put a shirt on or off her and I think that makes her madder. Kind of like taking a band- aid off, sometimes it is better to just rip it off!!

Bob is only suppose to work a half day today (we will see) and then we will make the decision as to whether or not we can take her out. It is really hot and we have another Ozone Alert (so no outside stuff) but no worries for Bailynn she is anti-nature!!! (She so gets that from her mom!! Good to look at not fun to sit in!)

I will let everyone know how today goes. Especially if we get a hiatus from the house!!!(The girls and I could really use one =). )

~Bobbi


 

July 21, 2008

The weekend went really well for Bailynn. On Saturday Bob got home around lunch time and we took Isobel to Wal-Mart on Saturday evening to get her school supplies. (She so wasn’t impressed!!) Bailynn did great. She was so glad to see her shoes and the only complaint she had was being moved to and from the car.

Then on Sunday my parents, Jacob, and Leahanna were all in and we went to the mall around 2:00. Then we went to Target and finally Turonies. She did great!!! She did fuss from sitting up so long but not that much. I could tell the difference in everyone getting to see the outside world a little bit.

Today Isobel and Arwyn have swimming lessons so we will be getting out for that (Bob is meeting us there). I think the girls always settle well back into routine. We are such creatures of habit at the Hammonds House!!

Bailynn is still needing more pain medication than I thought she would by now but she is eating a little bit better. Her incision does look like it has separated a little and it still is oozing. I am going to try and take more Stery Strips off tonight so that more of the incision can get some air.

Hope all is well with everyone else. Love and Thanks Bobbi

P.S. Isobel is suppose to have an Echo on her heart this week. We are doing this just a precautionary measure to verify there are no signs of Tuberous Sclerosis. Please keep her in your Prayers. I am more worried about her reaction to the test than the results!


 

July 22, 2008 

Another long but great day. Yesterday went well getting to swim lessons (man was it Hot!!!). Bailynn’s therapist, Amy, helped us in the building and Bob met us there. (I really am so glad we have such good friends and great help at the Rehab Center). Bailynn has had some trouble resting well during the day now that the good pain medication is gone but I do believe it is helping her appetite a little.

Today we have stayed in and I have been running around the house cleaning, striping beds, and bathing 5 girls again! Anyone who thinks a stay at home mom doesn’t have a full time career is Crazy! We don’t have to go anywhere again till Friday and I am sure Bailynn will be feeling even better by then.

Bailynn is having more seizures again. She always has a little bit of a break from them when she has surgery (morphine is a really good anti-seizure medication but can’t be used for that purpose!). She has already had 2 pretty significant ones today and had 3 yesterday. Though the seizures are a part of her that I know will never go away I just hope that no damage comes to her back during this healing period.

Isobel’s Echo is Scheduled for next Thursday the 31st out at the Deaconess Gateway Hospital. Our only problem with having to do it there is that they really don’t know what Tuberous Sclerosis is! If we have any issues we will most likely try taking her to Riley when Bailynn goes back in November!

Love and Thanks Bobbi


 

July 23, 2008

Last night, in an attempt to take off a few strips and dress Bailynn, we upset her so badly that she threw up. Then she was so upset she would not take her bedtime “fake” Boost. Her incision is still gooey under the strips and the strips are so sticky. I need to get them all off but without a repeat of last night. I know it can’t feel good but I know that if they were off, the incision could get some air and feel much better.

Bailynn ate Spaghetti last night for dinner and did well with it. She was quite restless again yesterday but slept well through the night. We have road construction going on in the neighborhood behind us so bright and early this morning we were woke up by loud bang and clangs, oh and 4 dogs barking at it. What an alarm clock!!!

This morning already has brought tears for Bailynn. She keeps trying to reach back and scratch it still.

On another note, I got to talk to my grandpa last evening and he sounded good. He knew who I was but was unsure of where I was and that I had 5 children =). (Hard to swallow all at once!) I have promised to go and see him in the next couple of weeks. They live in Hardyn, Ky. about a 2 hour drive. My grandma sounded good but definitely a little beside herself. She has done some great things to protect him, like hiding the car keys! Once Bailynn is doing well we are going to make a trip down there to see them.

Thanks and Love Bobbi


July 25, 2008

The last day and a half has been very rough. Bailynn has done a lot of crying and doesn’t want to sit or get out of bed at all. I moved the TV and DVD player from my room to Bailynn’s and I am only messing with her to feed her, bath her, and change her diaper. I did finally get all of the strips off despite her screaming and tantrum!! I feel like such an ogre. Today I am hoping will end on a better note and that she will get some rest. (she is not sleeping) We have completely ran out of Tylenol w/ codeine and I do believe that is most of the problem, the plain Tylenol is just not cutting it!! Also she is going to the bathroom on her own right now, basically due to the less than large diet she has right now. She does however scream and cry when she has to go potty. Even some of her favorite toys yesterday didn’t help to cheer her up.

Isobel and Arwyn are such troopers. Everyone is on edge when Bailynn constantly cries but yesterday they sat in her room with her and watched “The Lion King” with her. Through her crying Isobel and Arwyn sat and would occasionally say “quiet Bailynn, we can’t hear the movie!” I know that they are such exceptional people!

Please continue to pray for our sanity and Bailynn’s comfort. Thanks and Love
Bobbi


 

July 27, 2008

Bailynn is such a trooper but the last few days have been filled with screams and tears. She is twisting so badly to the right and keeps her head tucked. Not only is she twisting she is leaning her shoulders forward hard and her incision at the top has separated a bit and I fear that it is going to be quite an ugly scar in the future, not that she doesn’t already have quite a few this just seems more significant. We have tried getting her out a bit this weekend. We took her to the Downtown Library and the Museum, both of which she cried through, though the other girls were delighted! Her wheelchair sits too upright right now for her and she is very angry when we use it so we have been using her stroller today. She is so tall (or long legged!!!) that her legs dangle far off the foot plate and she sits horribly in it. Again we need a new Stroller or something!!! She was happy to hit her bed this afternoon and has been only slightly fussing watching “Bob” aka The Incredibles and “Flick” aka A Bugs Life. She has had more of an appetite and did require yet another enema but I do believe we are on the upward slope now with digestion! She is taking minimal pain medications and sleeping okay during the night. She is just so

unhappy with us. We go back to Indy in a week and we are hoping that we get a good report.

I hope everyone’s weekend went well.Thanks to everyone who has been calling, bringing dinner, and sending lovely cards. We so appreciate Everything!!

Love and Thanks Bobbi


 

July 28, 2008

Welcome to Holland

Welcome to Holland! by Emily Pearl Kingsley
I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . . When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michalangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes and says, “Welcome to Holland.” “Holland?” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place. So you go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” The pain of that will never go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you will never be free to enjoy the very special, very lovely things about Holland.


July 29, 2008

So another day. We are really anxious to go see the Doctor next week and discuss our mounting concerns for Bailynn. Guilt has struck us both quite a bit. The thoughts of “What have we done?” Keep going through our minds, knowing full well that Bailynn could not have continued to live with her spine as crooked as it was, but wondering why she is haveing to endure such pain and unhappiness. My whole goal for her life is that she has a happy one. Bob and I understand she will not be a Rocket Scientist and will not get Married and have Children of her own but her Joy is such a precious thing to us both. I look for her smile in the morning and it hurts ones soul when it doesn’t come. She has given us a few glimpses of happiness the last few days, but mainly agony. She cried so hard last night that she threw up on me again. I can’t explain what it is like to watch your child endure all of this from seizures to surgery and we take it all in strides. Her life is a precious gift and a never ending Roller coaster.

Please continue to keep her in your Prayers. Love and Thanks to all

Bobbi


 

July 29, 2008

What a difference a few hours can make. Tonight we took the girls to the Library and Bailynn was actually happy to be there. She smiled and enjoyed herself. We looked at big bright colored books and she really seemed to be enjoying herself. She did fuss about being moved to and from the car but over all she did great. Than we came home and she laid on the couch out in the Family Room and didn’t seem as bothered by everyone’s presence and watched “Scooby Doo” and “Charlie & Lola” with very minimal fussing.

She checked out 2 Fancy Nancy books from the Library and enjoyed being read to this evening. She even made some of her happy gurgle noises. It really lifted all of our spirits.

Bob put her to bed and she has laid in there with no tears and no screaming. I was actually able to the housework tonight with out rushing back and forth between her room and what I was doing to console her. Baby steps towards happiness but we will take it!!

Tomorrow she doesn’t have to get out and go anywhere, so another day of rest! Hopefully her good mood will spill over into tomorrow and the girls and I can all enjoy the DVD’s and books that we got at the Library.

Thanks to all that prayed so hard today for her and thanks for all the emails and calls of concern. It is just great to know that everyone out there loves Bailynn almost as much as we do =).

Love to all Bobbi


 

July 30, 2008

Today went really smooth. I didn’t move Bailynn much and let her rest in her bed for most of the day. She enjoyed watching some “Dark Wing Duck” cartoons that we got from the Library. (I sure do hope some of you out there remember that cartoon. My brothers and I always found it to be hysterical.) As a family we watched a Scooby Doo Movie. The girls can’t get enough of Scooby and Shaggy being silly! All in all today was a good day. Bob got home a little early and stayed with all the girls while I went to an Eye Doctor Appointment and despite Naomi crying for me (because I’m better and all) they did great. Of course ordering Pizza did help quite a bit.

Tomorrow is Isobel’s big day to have an Echo. She is also suppose to have some Blood Work done (just routine stuff). Bob is suppose to meet me there and help out. For those of you who don’t know Isobel starts Kindergarten in a little over a week. Her first day is Arwyn’s 3rd B-day (August 11). Isobel is sometimes excited and sometimes not so much!

Bailynn has also pretty well regained full appetite. She has ate like a chap the last two days. Yah, for Hotdogs!! (I think there was a report last week that we are all going to get Cancer from Hotdogs. I kind of figure we are getting Cancer from everything these days and I don’t believe Bailynn would very happily give up Hotdogs!!)

Keep Praying for more good days and happy endings. Love and Thanks to all
Bobbi


 

July 31, 2008

Today has taken quite a drastic downturn. Bailynn threw up in the shower this morning due to intense pain from being set up. She then did fine while laying in bed but was incredibly agitated when we got in the “Rocket” (this is what the girls call our mini-van) to go to Isobel’s appointment. Isobel’s appointment was canceled by the office and rescheduled for next Wednesday. They had some emergency, but I digress. So, we went ahead and headed to the East side since we were already loaded in the car and pointed that way. Bob met us at Target to walk around and this is were things went from bad to worse.

Bailynn doesn’t seem to be able to life her head upright. When I attempted to help her a little she screamed such an earth shattering scream that all I could think about was if people really can break glass?!! She drooled all over her shirt and cried the entire time. She normally has fun looking at all the new whirly lighted noisy toys, but not tonight. Nothing made her happy till she was at home in her bed. She even threw up on herself on the way home from the East side.

Bob and I were beside ourselves to say the least and as soon as we arrived home I called the Doctors Office. Her doctor was not on call but his associate that assisted in the surgery was. We told him what is going on and he immediately took the info to get her more Tylenol w/ Codeine. Then he insited that we bring her up there tomorrow. We have to be there at 12 our time 1 their time. Please pray for our car trip. Bailynn HATES the car right now and please pray for Bob, I have never seen him look so distraught.

We really just don’t know what we have done. We are in for a long night and day tomorrow. As soon as we are home I will try to pop on here and give another update. We will be calling our Parents after the appointment if anyone can’t wait that long. I am giving you permissions to seek the info elsewhere =).

Love and Thanks to All Bobbi


 

August 2, 2008

Today started different than it ended. We drove to Indy this morning with the intent of just taking Bailynn for a check up because of her extreme pain and ended in the O.R. Bailynn Had surgery this evening yet again. It is 2 am I just got home so I will do my best not to sound crazy. Bare with me.

Okay, after having an X-Ray, it was discovered that the rods that were just added 3 weeks ago had split the bone (yes, split the bone) and were jabbing through her necks muscle tissue making it impossible to lift her head!!! Okay, not only that but the reason this rod was were it was was because he had tried to place it lower during the last surgery but had broke bone that time (yah, forgot to mention that to us during post op last time) So, Bailynn in all has 3 splintered parts of bone off of her upper vertebra in her back and had to have bone grafting and rods removed and rods moved and parts shimmied and shaked!!! She is now at St. Vincent’s recovering again from yet another surgery (and of course has thrown up) She should come home tomorrow but maybe Sunday before she is released. I have called in some help and even though this is a total mess we are dealing with it well. I left Indy and 10 PM and got home around 1:45 am. The girls and I are going to try to catch some sleep, visit the dogs, eat breakfast, pack, and head back up to Indy in the morning!! Please Pray that I don’t fall asleep driving =). So tired.

I will write more tomorrow. Love to All
Bobbi


 

August 2, 2008

Okay, still tired. I finally got to bed about 4:00 AM and got up around 8:30 AM. The girls and I were on the road again by 10:30 AM. I pointed the “Rocket” north and God got us there. The babies were amazing along with Isobel and Arwyn taking everything as it comes with no complaints. I can’t even tell you how blessed I am by my children and their ability to assess and adjust to the situation. Arwyn was so eager to get back in the car and get “her Bailynn” back!!

The girls and I made it back up to Indy at a little after 2PM and had about an hour and a half before we loaded back into the “Rocket” (if only it had a turbo button and could fly!!!) with Bailynn and Bob and headed home.

Right now Bailynn is laying happily in her bed at home and watching “Meet the Robinsons.” Bob and I both agree that though we can tell she is in pain from yet another surgery, it is quite possible that the pain from the broken bone/rod was more painful! We are going to keep her flat on her back as much as possible and we are not allowed to use her wheelchair right now because it sits up way to straight. Her neck needs to heal and there is no other way to do that but by laying down and resting. We do still have her stroller that we can use and we are working on replacing it with a more fitting stroller.

The snags that we have ran into: Bailynn’s pain medication is at the Pharmacy. That’s not good right. No, and we don’t think so either. Apparently CVS closes at 6:00PM and we got there at 8:00PM Oops!! Okay, so we have some Tylenol w/ codeine but the good stuff is at CVS. Please Pray the night goes well without the stronger medication. We will be going first thing it the morning (when they open) to get her good medication.

Please pray that we all get rest. There are dark eye circles all around and we all could us a great night sleep. We go back to Indy in 6-8 weeks. Please pray that we are done with this.
I just want everyone to know how much we appreciate the prayers for Bailynn and our Family. I wish I knew how to explain the everlasting effect it has had on us. My husband and I are so grateful for everyone of you. Yesterday was such an out of body experience. We just took everything in small steps and knew that things needed to be done immediately to give Bailynn relief. My husband and I never look back in decisions with Bailynn. We have always put both feet forward and jumped whole heartedly into everything we have done for Bailynn. God blessed me with such a wonderful companion to go through life with. He is truly the only other person that can fully relate to how I feel and I to how he feels when it comes to being Bailynn’s parent. Our pains and our triumphs are shared. (For better or worse) Bailynn is such a triumph and a test that I think we have successfully taken the challenge of. I often feel like each day is a chance to shine for my family and their success and it gives me the strength to be the best me for them. Don’t get me wrong I feel great failure on bad days. Friday was a day were I took all the blame for Bailynn’s pain. I try hard to understand knowing I never will and in my human was accepting all the blame for Bailynn’s misery. Did I lay her wrong? Did I lift her wrong? Did I sit her too soon or not soon enough? I start with blaming myself and then work my way back. I know God has a great plain for all of us and her life will be Glorified.

Simply Bobbi


 

August 3, 2008

Bailynn has had such a great day. She hasn’t cried, she is watching DVD’s with Isobel and Arwyn and she is eating!!!

We are all still trying to recover sleep and get back to some routine. That will come. Love and Thanks
Bobbi


 

August 4, 2008

Bailynn is still doing great. She woke up about 7:00am crying because she had slept through her pain medication time. Once remedicated she ate breakfast and went back to sleep. She is trying to roll!!! She hasn’t tried to roll since November!!! Not really a good thing to be trying to do right now but I am so glad that she is feeling well enough to attempt it.

Bailynn has a lot of drainage coming out of the incision again and a lot of blood. The Doctor said it would be worse this time because of all the scar tissue but she is not swollen at all. We just don’t want any infection. I do get to give her a shower tomorrow and I will be glad to get her cleaned up. We have layered her bed with linens so we can slowly pull out layers as they get soiled and she is tolerating all of our efforts quite well.

I don’t know what will come in next few days, but so far so good.

Love and Thanks Bobbi


 

August 5, 2008

Love always protects, always trusts, always hopes, always perseveres. 1 Cor. 13:7

I think I have mentioned before how Awesome Bailynn is and I am just going to say it again. I love history and I think of the warriors who were named great men, none of them could top Bailynn.

Today she slept, she played, she smiled, she LAUGHED!!!, and she took a shower with joy.

I washed her hair 3 times(her hair had got into her incision and was so ewwww!!!). There is quite a bit of puss coming out of the incision and blood, but over all the incision looks

good (taking the bandage off was not fun however).

Bailynn is doing so great. We moved her from her Bed to the shower and back again. Other than that she has been laying in her bed and been very happy about it. I need to call and make her a follow up appointment for 6 weeks. Arwyn’s B-day is Monday (as is Isobel’s 1st day of School) and we are hoping Bailynn is feeling well enough to sit in her stroller by then.

Thanks and Love to all and keep up the great Prayer support!!! Bobbi


 

August 6, 2008

Bailynn has an announcement for all that helped contribute to her Wagon donation for her 5th Birthday. Her Wagon at Riley is finally in service. We got the notification today in the mail. Her Wagon’s license plate reads “Donated by Family and Friends of Bailynn Hammonds” We will keep out eyes out for it when we go up next and hopefully we can get a picture of it to post on here. How exciting!!!

Okay, on with the current news. Bailynn’s Therapist (shout out to Amy) is on vacation this week, but being the awesome person she is she came to the house and got all the information together to order Bailynn’s new stroller!!! She Rocks!!! Unfortunately there is no PINK only purple, boo!!

Onward, Bailynn had yet another great day and every time we went to her room her legs were dangling off her bed (not good but so glad she is moving and grooving). I asked her to please quit and she just smiles at me (so rotten!). I gave her lunch and she did rasberries through it and spit chocolate pudding all over my arm and laughed at her messy self! Isobel spent the majority of the day in Bailynn’s room talking to her, picking her toys up off the floor and giving them back to her, and watching movies with her. Now Isobel is not so great at letting Bailynn watch the movies she likes best but Bailynn loves the company!!

She is already down to just taking her pain medication before bed so that she sleeps better and not complaining about pain throughout the day at all.

She saw her shoes today and squealed thinking she was going “bye bye” and was really disappointed when we didn’t put them on. Maybe this weekend, we are not pushing it!!

Great days are the best thing. I also want to thank all of Bob’s Aunt and Uncles and MomMom for the Cookie Bouquet. It was such a hit!!!

Thanks and Love Bobbi


August 8, 2008

The girls seem to be coming down with a cold. Arwyn has it the worst but all show signs of sneezing, slight fever, and runny noses. This is just what we need, don’t you think! Bailynn is still doing great however. She took a shower this morning and cried a lot but was fine once it was over. She has yet again spent the day watching movies and playing with toys. We are going to take her on a car ride tonight just to change the scenery a bit.

Isobel starts school Monday (Oh, and Arwyn’s Bday)!! Bob took the day off so that we all can participate is the big day!! Bailynn will probably be sad to lose her company. Isobel spends the most time with Bailynn during the day.

We take Bailynn back to Indy on Sept. 25. Thanks again for all the support.
Love to all
Bobbi


 

August 9, 2008

Bailynn has had a good morning. Last night was a little rough. She did not tolerate sitting in her stroller very well. After inspection Bob and I noticed that (the stroller is cloth) the back is letting her bottom and lower back sink in and her head stick out a little bit. We are not going to use this stroller unless we have to now. It definitely is not helping the situation. We did take her on a car ride to get out of the house and she was disappointed to come home =).

Her incision continues to look better everyday. There is still discharge and blood but not much and she has no bandage now. She really doesn’t seem to need her pain medication at all now. We just give it to her when we have to mess with her (like showers and clothing changes). Isobel and Arwyn have even noticed the difference in Bailynn’s happiness by noting that Bailynn is not crying. It is such a relief to us all.

The girls all have colds. Runny noses, coughing, sneezing, and Arwyn claimes that her throat is hurty (if that is a word). Hopefully it will clear up by Monday when Isobel starts school.

Please continue to pray for Bailynn’s recovery and also we are still waiting to hear if she has qualified for the State Medical Aid, Children’s with Special Health Care Needs Services, we so desperately could use this assistance more than ever right now.

Thanks and Love to all Bobbi


 

August 11, 2008

Happy Birthday to Arwyn & Happy Birthday to Alexandria Young who is also 3 today (oh, and Happy Birthday to Beth tomorrow !!)

Bailynn had a great day. We figured out how to recline the seat on Bailynn’s Wheelchair. It is not perfect but works for now.

Isobel did great going off from Mommy and Daddy today. She didn’t seem phased in the slightest. Arwyn however balled and keep saying “I want my Isobel!!” All day she wanted to know when we were going to go get Isobel no matter what we took her to do for her Birthday.

Isobel looks so tired and will be going to bed very early tonight. Tomorrow I will not have Bob with me but I am sure all will go fine.

I am just glad Bailynn did really great running around today. She only fused once about being moved from “Rocket” to Wheelchair.

We did give her all her pain medications this morning before we left and I believe that helped a lot. She is still looking hunched and we are getting discharge from the incision still but I am very impressed with the level of recovery so soon this time. It just goes to show that what ever went wrong last time went wrong quick.

Isobel is still showing signs of a cold as is Lila but hopefully we are on the downward slope! Thanks to all and Big Love

from The Hammonds
~Bobbi


 

August 13, 2008

I am completely impressed by Isobel’s maturity. Not to say she isn’t still simply a 5 year old, but the last 2 days of school she has insisted on walking in by herself. Now mind you the door is steps out of our “Rocket” and her classroom right inside the door. Isobel did however come home starving yesterday and after further inspection I realized she didn’t eat any of her lunch. Isobel is such a slow eater and hopefully she will realize soon that she needs to eat quickly. (We have been putting Isobel to bed around 6:45 every night and she is not complaining. She looks so incredibly tired!!)

Arwyn is still struggling with the absence of her playmate, but her and I are having a great time. Today we painted nails!!

On to Bailynn. Bailynn is doing great. Her incision is still icky in spots and one knot in her stiches doesn’t look so great but she is happy!! She is enjoying getting up every morning and going for a car ride. She is getting to ride in the front seat right now due to the fact she needs to stay reclined, so I believe that is making the trip much more enjoyable for her. She is pretty well off pain medications, she is eating her normal diet, and her pipes are functioning up to pre surgery levels. All in all things are looking great for Miss Bailynn.

I can’t forget to tell you that the twins are 6 months old now and are getting bigger every day. They too love the early rise and adventure. I am so blessed by my children’s love to go.

Love to All Bobbi


 

August 16, 2008

 

Okay, this is not what I wanted to have to write today, but Bailynn is yet again in surgery as I am typing this. She has a massive infection in the incision and puss is draining out of the top. Over night she started running a fever and just an hour ago her fever was 104.3 !!! She became very irritable and suddenly started having swelling this morning. So yet again we hopped in the “Rocket” and headed North. (Man do I wish it was truly a Rocket and didn’t take almost 5 hours to arrive here.)

Bailynn, like I said, is in surgery to clean out all the infection and start a round of antibiotics. She is going to be admitted and then we really don’t know how long she is going to have to stay. We drove separately and plan to some how divide if it comes to division.

These are the things we would like people to pray for.
1. Bailynn’s infection to be swiftly and efficiently removed!!
2. To not have to remain in the hospital any longer than required for recovery.
3. For Bob and I’s sanity (this is getting old quick!)
4. For the other girls (remember Isobel just started School last week.)
5. For my 4 dogs by themselves at home (okay, you don’t have to pray for this one but I will =)!! )

I know things are going to be fine, but Bailynn was so pale and so feeble looking today. My heart breaks when she suffers. The rods did look fine and the Doctor seeing her tonight is not her normal surgeon. He seems sufficiant but talks about having to go back in to remove infection again on Tuesday. This seems CRAZY. They think the infection stems from too many surgeries. So why are we doing more and more and more!

I will stop venting for now and hope to write again soon with a good update. With deepest gratitude for all who follow Bailynn’s Story.
~Bobbi


 

August 17, 2008

Surgery proved to be more complicated then originally thought. Bailynn has infection from the top of her spine to the bottom and they had to reopen her entire back to clean out all of the infection. She is running about a 99 degree fever now (which is way better than last night) and eating surprisingly well for all that has happened.

Tomorrow they plan to go back in and clean out the infection again. Then they will have to decide whether or not to remove the rods. Thats right remove the rods. The fear at this point is now that the infection will not be able to be cleared with out taking out the rods and therefore sending Bailynn back to her Scoliosis curve.

There would also be no prospect of putting new rods back in for at least a year as to give her bone a chance to recover fully.

I don’t have the words to explain all that has happened in the last 48 hours. I don’t know how to tell people how we feel or what will happen next. Bob and I have always lived Bailynn’s life with her one day at a time. This is one situation that we are truly having to step back from and live in the moment. As of right now I can tell you that I am going home today with the other 4 girls. Bob will be staying with Bailynn. Tomorrow we will know more about the week but right now my intent is to come back up on Wednesday and re leave Bob of his post so that he may return to work on Thursday (this in not pertinent and his boss knows exactly what is going on).

Please pray the doctors are guided well as what to do next for Bailynn and as much as Bob and I don’t want to see the rods go we both feel that they have been nothing but trouble.

Please hug your children a little tighter for me tonight. We all take for granted health. Remember how precious every moment is.

With Love Bobbi


 

August 17, 2008

Bailynn ate dinner tonight and continues to do well. She was playing with a toy and watching a movie when the other girls and I headed home. Bailynn’s only issue right now is that she is not peeing very often. Yesterday I took a urine sample to be tested for a UTI (urinary tract infection) and will have to wait till tomorrow to find out the results. Bailynn has a ton of puss in her urine (this is not anything new just really bad timing to say the least). The good thing is she is on a lot of antibiotics right now for her back infection. They have her on a broad span of different antibiotics until they can determine what bacteria is growing in her back. This takes 72 hours. So I am hoping that the antibiotics for her back help her bladder issues. I will have to talk to her pediatrician and her urologist tomorrow to explain what is going on currently and what needs to be done in the future.

I made it home around 8 tonight and got all the girls bathed and in bed pretty quickly. (The dogs were happy to see us!!) Isobel got quickly into bed and is ready to go to school tomorrow but keeps saying she needs her Bailynn at home and not at the “Poky Doctors”. (I agree!)

Dr. Didelot (Bailynn’s Surgeon) will be doing rounds tomorrow before he starts his surgery schedule We are hoping this is early and that he can give us a time for surgery. Bailynn will have to be squeezed into the already tight Surgery Schedule for tomorrow. Please pray they fit her in quickly because she is to stop eating at midnight and we really don’t want her to have to starve any longer than necessary. She is always really nauseous the longer she has to wait.

Please feel free to ask any questions you may have. I understand the confusion all this bring and trust me I don’t understand a lot of what is going on but want to help explain as best I can.

Please pray that God’s purpose shows through this situation. I just don’t know what it could be but I am squinting hard looking for it. Bailynn is so precious to me. I know everyone knows how crazy overprotective I am of her and this is killing me. Like Isobel I just want my Bailynn back here with me.

Love and Thanks to all who Love Her Bobbi


 

August 18, 2008

Isobel was eager to go to school this morning but asking for Bailynn. I did go in and explain to her Teacher what is going on just in case we have to dash off to Indy. Isobel’s new best friend at school is a little boy named Cadan (as she says “with a D like Daddy” not Cannan like her cousin =)!! ). She continues to struggle with eating her lunch and as soon as she hops in the “Rocket” after school she opens her lunch pale and inhales it. I know she is hungry at school but she says the cafeteria gives her a tummy ache. I think there is just too much going on around her for her to focus on eating.

I spoke to Bob this morning (okay like 100 times) and Bailynn is going into surgery in about an hour. The surgery will take about 1 hour and they are going to irrigate the infection again and sew her up properly. They will not be removing the rods which is a relief to Bob and I. Bailynn will remain on antibiotics for 4-6 wks through IV with drainage tube in her back. She will then remain on oral antibiotics for upwards of 6 months.

Please pray all goes well today and we are hoping to get her home by the end of the week.

Love and Thanks to all Bobbi


August 18, 2008

Bailynn is out of surgery. She did well and Dr. Didelot said that the infection was minimal. Now they are working on identifying the bacterias growing in Bailynn’s back so that they can provide us with the correct antibiotics for home treatment. She most likely will get to come home on Thursday. That is depending on drainage and the incisions recovery. She has a lot of staples and stiches on the incision to keep it together. We will have to return in about 4 weeks to get them removed but because of all the surgeries they wanted her incision to be placed tightly together. The hardest part now is her body trying to recover form 5 surgeries.

A doctor with infection disease is suppose to go and speak to Bob tomorrow about Bailynn’s at home treatment. I intend on driving up Wednesday morning now. Maybe even tomorrow if need be, but again 4 dogs!!! We are crazy and I love all my crazy.

Please continue to pray for her swift recovery and for the right people to be placed here for immediate care and help during her transition home and her remaining on the IV antibiotics.

Thanks to every one who has been praying for our family. I know we are not in this alone, but the stress of it all make me forget. I know everyone shares in Bailynn’s life in a different way. Mine today has been cleaning like a mad woman to take my mind off all that is going on in Indy and not being able to be there.

Isobel came home very upset today. Her friend Cadan doesn’t want to be her friend any more. I told her not to worry but she is devastated. This is such a hard subject to explain to a 5 year old.

Love to All. Peace be with your families this evening.
Bobbi
P.S. Happy Birthday to my baby brother who turns 19 today. I love you Jacob.


 

August 19, 2008

Bailynn is doing great today. She has little drainage coming out her back and has ate some. The pediatrician on her floor says she has the prettiest smile (duh!). Tomorrow they are putting in the pick line (sp?) for her IV antibiotics. I am driving up in the morning with the girls and intend on coming home Thursday (hopefully with Bailynn). So far so good and hopefully this infection will be taken care of. We are now waiting for the Doctors up there to coordinate home health care needs.

Bob sounded good when I spoke to him this morning even though I know he is getting even less sleep than me (if that is possible). Please keep him in your prayers. It is very hard to live in a Hospital. I know he is anxious to see us tomorrow as are we.

I will give more updates as I get them but for now all is well. No news is good news right?! Love and Thanks to All
Bobbi


 

August 20, 2008

I am back in Indy and so glad to be with Bailynn again. She is doing great and will be coming home tomorrow (we don’t know when). I got to wash her hair and give her a washcloth bath. I can tell that she feels much better. Her and the girls are watching a movie and all are well. The only fusser right now is Lila who decided to cut a tooth yesterday!!

I have already spoke to Deaconess Home Health Care and we are getting everything in order to have things ready at home. Please continue to pray for her recovery and for our visits back and forth to Indy to diminish.

Here is the plan to all who have not heard. Bailynn is going to remain on IV antibiotics for 4-6weeks then she is going to remain on oral antibiotics for as long as 12-18 months at which time we will stop and see if the infection flares up again. If it does the Rods will have to be removed. Please pray. Then it would be a waiting game to put in new rods if she would need them (upwards of a year to recover).

I will let everyone know when she is home! Love and Thanks
Bobbi


 

August 21, 2008

We are home. I will update when I get a chance.

Our prayer request for now is that Bailynn’s medications are going to cost us $30.- a day (for 6 weeks). This is after insurance. If we get approved for Children’s this will be taken care of.

Love Bobbi


 

August 22, 2008

Here are today’s new prayer requests.

First for Bailynn. She is still doing great and you would never guess the child’s back looks the way it does. She has staples, stitches, and these straw looking things running the entire length of her back. She is so tolerant of pain and she was so glad to be home in her own bed ( I just wish it could raise, lower, and sit up like a hospital bed =)!!! ).

I have contacted our insurance and Bailynn’s Case worker through them is going to try and figure out why we are still waiting for Medicade Waiver (we have been on the list now 7 years). Bailynn’s case manager also believes that the IV medications have good possibility of being cover 100%. Please pray to that end.

I have contacted St. Vincent’s Hospital and they are sending me a Financial Assistance Application in the mail. I so hope we qualify.

Please pray for gas prices (as I know we all already are doing). The trips back a forth to Indy have gotten gradually more and more expensive and now we have to start going every 2 weeks (not like we already haven’t been). Our next appointment is Sept. 9.

Please pray for Bob at work. He went back today after 4 days off on FMLA (we are hoping that they can somehow work with us on his days missed and the policy of no pay). He so badly wanted to stay home today but we both knew it was better for him to return to work.

Last for our sleep. Bailynn’s medications are every 6 hours with a 30 minute infusion time. Needless to say some of these fall during sleeping hours.

I just want everyone to know how appreciative we are of the prayer support and phone calls even all the visits in the hospital. I was so surprised at the number of people from home who came to see Bailynn. Also big thanks to My Mom & Dad for the long trek to Indy with us, Aunt Lois for the snacks, Karen & Anna for the provisions.

Rebecca for the cookies (I so want the recipe they were awesome!!), and everyone else who played a part. Thanks and Love
Bobbi


 

August 23, 2008

Bailynn is looking great. She had a smooth day today and even did well getting cleaned up. I am truly amazed at how tough she is through it all and often wonder how others would fair under such circumstances.

The incision is scary from a visual stand point but does look to be healing well (yet again). My only room for concern is that the incision goes all the way down into her diaper. She has not had a bowl movement since the surgery and I honestly fear one. If she has not gone by tomorrow however I am going to give her an enema (please pray, she does not enjoy having this done). Other than those concerns the medication is going well, she is eating fine, and her temperament couldn’t be better.

I am hoping we get her new stroller in the next week or so and hopefully she will be tolerant of sitting in it. We are still taking thing one day at a time at the Hammonds House. The Lord only knows what tomorrow will bring.

Love and Peace to All Bobbi
I posted 2 new photos!!


 

August 26, 2008

Bailynn had a rough evening. She first had to have her PICC line bandage changed and blood taken. After the Home Health Care Nurse left I notice that the PICC line was being bent by the way she holds her arm and the way the bandage was replaced on her arm. After 2 hours of calling we finally got a hold of an on call Nurse who came out and changed the bandage again. Needless to say Bailynn was very upset by this. In between the 2 bandage changes I had to give Bailynn an enema (this was basically disastrous). It was a big mess and I tried desperately to keep it out of the lower incisions with out much luck. After such a traumatic evening Bailynn got very upset when I tried to give her her pain medications, choked on it, and proceeded to throw up everywhere. What and evening. I think it was probably only the second time in history that we were unable to give Bailynn her evening anti-seizure medications because she was just so upset.

This morning has brought about another day and fresh beginnings. Bailynn’s temperament today has been exceptional. She is in a lot of pain when the medications wear off but in good spirit when properly medicated!! As I believe most of us would be after such extensive surgeries back to back (on a back).

Our only ongoing trouble is that Bailynn’s bladder is enlarged due to the UTI and now she is urinating so much at one time that she is soaking through the diaper and all over her bedding. I am having to do a lot of laundry and I already have to do laundry for seven people =). However if this is the worst of our troubles right now I will take it over anything else.

The incision still is looking well. I am concerned with the staples and the risk of infection with them. There are just so many and her back is so small. I will look forward to Sept. 9th when she gets them removed.

I do have some big PRAISE GODS!!! Yesterday Bob found out from his boss that he will not have to take last weeks 4 missed days without pay!! Praise God. And the big one…. Bailynn was approved for Children’s with Special Health Care Needs!!!! PRAISE GOD!!!

Children’s helps cover co-pays, equipment, and some gas travel expenses. Yesterday was a good day on the financial front for our family. We will finally be on the road to getting some of these Health Care expenses payed down.

Thanks to all who have been Praying. Love to All. Lord be with you and yours Bobbi


 

August 27, 2008

Well a new day brings new challenges with Ms. Bailynn. Today I have spent most of the morning on the phone with doctor offices trying to find out what to do about itching. Bailynn has been scratching her back so much in an effort to get to the incision and to remove the bandage that she has broke skin on her lower back. I know that the itching stems from her backs healing process and her hate for all things sticky but I am trying to find the best solution to her persistence. For now her back is enjoying a gulp of fresh air, as I have resolved to just leave the bandage off for now.

Not only are we having itching issues she also had a staple that had became dislodged and was wobbling about.

In an effort to protect her from further irritation I went ahead and removed the staple and her pediatrician assured me that this was the best solution. I have now tried to contact her surgeons office to verify that Sept 9th is the earliest that they want to see her. I am concerned that a few other staples are showing wobbly signs as well.

We are all doing well despite it all. The IV PICC line has been going off with out a hitch and Bob (on his own) even administered her medications last evening without any complication. We are still adjusting to Isboel’s school schedule and her constant state of fatigue in the evenings and I am trying to adjust to the 6 hours intervals of medication distribution for Bailynn. Please continue to pray for Bailynn’s swift recovery.

With Love Bobbi


 

August 28, 2008

Rough night. Little sleep. We ran out of pain medications but the Doctor did call in some more. She is just in a lot of pain.


 

August 29, 2008

We are still having a lot of trouble managing pain. She did sleep better last night. We only had to go check on her a few times. She has started grabbing at the PICC line and a nurse is suppose to come this afternoon to change the dressing again because Bailynn has pulled it loose.

She got a full out shower today and has slept ever since. I think she was so happy to get her whole body scrubbed down!! She even let me braid her hair without much complaint.

She has rode in the car with me yesterday afternoon and this morning to take Isobel back and forth to School (per the Doctors request to move her around and get her out more). She did wonderfully and smiled and everything. It wasn’t till I got her home that she curled back up and started crying. The Nurses up north believe she is just starting to really feel all the staples and stuff in her back because of the healing process and that it truly is painful (lovely).

We are still anxiously awaiting the arrival of Bailynn’s new stroller and really want it before our Sept. 9th trip to Indy. May it be so.

Thanks again for all the Support. Bobbi


 

September 1, 2008

Bailynn has had yet another rough weekend. Yesterday she ran a fever of 102 to 103 all morning, all evening, and throughout the night. We spoke to the infectious disease doctor on the phone and Bailynn has started an antibiotic for a Urinary Tract Infection as a precausion We also had blood work taken and the preliminary results look good. Her fever broke at around 3 am and hovered around 100 for most of the day and tonight she is back up to 102. We are truly beside ourselves. The I.D. Doctor said that we could take her to the ER, but both Bob and I know that they would not touch Bailynn and would immediately tell us to go to Indy. Unfortunately we have been down that road to many times before. I gave Bailynn an enema last night and have been cathing her intermittently throughout yesterday and today to try and relieve her from anything that could be causing the fever that way. She looks tired but doesn’t act any different than normal (well normal for 5 surgeries in 9 months). Bob and I are just mentally exhausted from all this. We spend so much time worrying about her and tending to her and calling doctors that fatigue in a mental rather than physical sense has set in. Along with the lingering feeling of defeat. I laid next to her in her bed last night, her little body smoking with fever (with a cold wash cloth across her brow) and thought how much I would love to take it all away and do the suffering for her. I would love to endure the pain and all that goes with it to just relieve her for a small time of all that she has to battle. Her life is an endless battle Bob and I fight with her everyday and I know God is protecting her. I just would love to hold her load for her. I feel more ache for her than anything. I wish so much that she could just be happy and “healthy” (healthy for her). Our family is just done watching her suffer. Please pray we can find the cause of the fever quickly. The Doctor was concerned that the PICC Line was infected but there are no true signs of it. If they would remove the PICC Line than we would have no way to administer the IV antibiotic and we fear she would have to then be hospitalized again (so basically this is not an option). I also don’t think that I have actually stated that the infection in her back is a Staph Infection. They said it is community Staph not Hospital Staph (so somehow that is better?!?!)

For Her Bobbi


September 2, 2008

If only “House” was a real Doctor, maybe he could figure out why Bailynn is running such a high fever.

Today Bailynn’s fever has hovered from 101-102 and tonight we have peaked at 103.8. When I took it 20 minutes ago she was 103.5. Bob and I have been taking turns placing cool cloths on her and reading her some of her favorite books, like “Stand Tall Molly Lou Melon.” We took her to see her pediatrician today and she could find no under lying cause for the fever. Bailynn’s ears look fine, her throat is good, and her lungs sound clear.

The Nurses did take a Urine sample to be cultured but that takes 72 hours. Her body remains alarmingly hot and her temperament good. She is playing and singing and eating and watching but burning hot with fever. I can’t explain it. It is so alarming. We go to Indy one week from today to get her staples removed and hopefully get some more answers.

Bailynn is incredibly addicted to her pain medications on top of everything. When she has missed a dose she begins to shake, get goose bumps, her teeth chatter, and she whimpers all from withdraw. Now we are having to set forth a plan to bring her down slowly off the pain medications that she has basically been taking since July. If it is not one thing it is another. The one good thing that came from today was I did get to sit for a few short minutes and just hold her. I miss just getting to sit and hold her. She is so big and I want so badly to be able to comfort her as I did when she was small enough to curl up on my lap and sleep.

Bob is so frustrated, as am I, but he is definitely handling it different. He wants to stay up with her also but he

gets up for work around 3am every morning and it is just out of the question. I try to not call him throughout the day as to give him some relief from the constant worry, but I don’t believe that helps much at all. We are just praying that some Doctor can figure out why Bailynn is constantly running such high fevers.


September 4, 2008

We spent yesterday morning in the ER out at Deaconess Gateway. Bailynn was running a 106 degree fever when we headed that way. Since yesterday she has consistently been between 104 and 105. She is lethargic and not very social (I wouldn’t be either). Her back is bleeding and she has blood is in her diaper (we think she may be having a menstrual cycle and part of me prays we are wrong). Her eyes look glassy and her smile is few and far between. We are driving to Indy tomorrow to try and get some answers. There were a lot of tests ran yesterday and all came back negative. They can’t seem to find anything “wrong” with her.

She did throw up last night and today I am going ahead and taking her out to see her pediatrician to get a check of her back and the other concern. We love her pediatrician and she has been so helpful and so incredibly compassionate, such a rarity for Doctors these days. She even called me yesterday evening to check on Bailynn.

I honestly have to say that yesterday was one of the days I fear most being Bailynn’s mother. I know her life is not going to be typical but as much as I know God can take her at any time I will never be prepared for the moment. Yesterday morning I felt so close to the moment and all I could think about was how deeply I would miss her. She has made me who I am today.

Isobel with her child’s perspective told me yesterday in the car. “Mommy, you know your doggy Fluffy (my childhood pet)”. I said “Yes.” “Well she is in Heaven with God, right?” “Yes.” “Well if Bailynn dies she will go to Heaven with Fluffy and God will find them. God will find them.” I said “Yes he will” She said “Than its okay cause God loves Bailynn and Fluffy.” Praise God for Isobel. Of course a few seconds later Arwyn chimed, “but I don’t want Bailynn to die.” I said, “Me either Arwyn, me either.”

Bless you all. Bobbi


September 4, 2008

Okay, finally some semi good news. Bailynn went to her pediatrician today at 11:30 her eyes swelling her body covered in splotches (this is not the good news part). Her fever was 104.5 when we finally got back to a room and her pediatrician immediately recognized the symptoms as an allergic reaction. The consensus now is that Bailynn is allergic on the Oxacillian Antibiotic that she has been taking for 2 weeks. As soon has we missed the 12:00 dose Bailynn started looking better and at 2:00 her color had almost returned to normal. She had more blood work done at Deaconess Gateway (you know because Doctors seem to believe she has way to much of the stuff) to check clotting issues and still more signs of infection. Here comes another 72 hours waiting for results.

The good news part: Bailynn’s fever currently is 100.4 the lowest it has been in almost a week. She is watching Toy Story because the Doctors did change the type of Antibiotic that she is taking. From a parental stand point she looks great compared to earlier. We are now praying that this is the solution and the answer to the trouble we have been having. Her eyes are no longer swollen and her heart rate has went down a bit. The new medication is every 8 hours instead of every 6 (Yah!! More sleep for me!!!). She even gave us a smile as we restocked her bed with rattly toys.

Now tomorrow we get to drive to Indy (I imphasize get with sarcasm) and have her back looked at and staples removed. We are also going to go and see her I. D. doctor and make sure this new antibiotic is doing its job.

Thanks so much for all the prayers and phone calls and messages. None of you can understand how great it is to know everyone out the cares so much for one little girl.

With Love Bobbi


September 4, 2008

Well as the evening progressed without much drama I should have know something was amiss At 7:00pm Bailynn began running a 105.2 fever again. She became splotchy just like earlier today but was acting fine. I called her local pediatrician and told her what was going on and she recommended Benadryl is a small dose (due to Bailynn’s epilepsy she is not really suppose to have Benadryl) and said it was probably due to the fact that the old antibiotic is still in her body and the Motrin from earlier had worn off.

Okay go on a bit and we get a call again. Bailynn’s blood work from today came back abnormal. Her ability to clot blood is compromised. Go on a bit more and we get another call from the Doctors. They want us to go to the ER and have Bailynn transmitted by ambulance to Indy. At which time Bailynn’s temp had went down to 102. Bob and I are trying to make the best decisions for our family and we have chose to stay home tonight and drive her up tomorrow. We have promised that at the first signs of anything going down hill that we will immediately get her transported to Indy via ambulance. Please pray we have made the right decision. We are both so tired and neither one of us had faith in ourselves enough to take our family safely up to Indy tonight.

If only our lives could be simpler.

I give Bailynn another dose of the new Antibiotic at 10:45. I am hoping all goes well and that the adverse affects are not due to the new Antibiotic.

Please Pray that they don’t have to do another surgery tomorrow. With her blood results the way they are it could be very dangerous even with proper precautions. Bailynn so desperately, as does our family, needs a long break from all of this and time to recover fully.

Bailynn’s first appointment is at 10:15 Indy time with her Infectious Disease Doctor and at 11:00 with her Surgeon. God willing we will get to come home tomorrow and not have to stay in the Hospital again. Just in case I have pack us all for 2 nights. I really want to have to come home and unpack tomorrow.

Bailynn’s Voice. Bobbi


September 6, 2008

Well, as many of you know, we got to come home yesterday. Bailynn’s Surgeon removed her staples and straw like things and her back looks great.

We saw her Infectious Disease Doctor and he agreed that Bailynn that she was having an allergic reaction to the Antibiotic and is therefore allergic to Penicillin. After 8 years and many (many many) medications Bailynn has proved to be allergic to 1. Pretty amazing in my book.

Yesterday worked out better than we had hoped also. We originally were going to have to sit in the hospital’s ER and wait for blood results, but Bailynn’s Surgeon convinced the I.D. Doctor to let us leave and come back if the results were bad (the tests take about 3 hours to run).

The girls were delighted and we headed for the Indianapolis Children’s Museum or as Isobel and Arwyn call it “The Dinosaur Museum.” We had a great time and Bailynn did wonderfully. Her temp. remained low all throughout the afternoon and early evening. We got good results around 4 pm that all blood work came back fine and we could head home!!!! Eager to head back we hoped into “Rocket” and headed south. Our beds never looking better.

Today Bailynn was only running a fever of 103.6 (only, don’t you love it, trust 103 looks good after 106) when she woke up and after being properly remedicated the fever came all the way down to normal.

Bailynn has done great today and we got her new stroller today. I posted a picture of her in it in her photo gallery. It is awesome!!! Thanks Amy!

Now we are waiting and seeing again how her body will tolerate the new Antibiotic that she was put on on Thursday. She is taking Benadryl in the meantime to help her body deal with the allergic reaction to the other medication until it is fully out of her body.

Thanks to everyone who has been praying out there. I will let everyone know when her next set of appointments should be. It will be anywhere from a week and a half to 2 weeks.

With Love and Thanks (Especially from Bailynn) Bobbi


September 7, 2008

Bailynn is broke out with a rash again and has hives. We called the I.D. Doctor and he has ordered us to stop all Antibiotics till some test results from a stool analysis come back. He is talking about pulling the PICC Line and we are terribly concerned because of the Staph infection in her back. With out good antibiotics the infection can flare up again resulting in yet another surgery. Bob and I don’t think she is allergic to the new Antibiotic but who is to say if she is or isn’t. She was on the other one for 2 weeks before we had problems. She keeps scratching her skin so hard and has made her self bleed in spots. I am giving her small amounts of Benadryl and putting allergy cream on the skin (she also has a sock over her hand to try and make her stop). I don’t know what else to do. She also has severe diarrhea. Bailynn has never had diarrhea in her life!! This is one of the reasons we are testing her stool. There is a possibility that an organisim is in her stomach that is normally controlled by good bacteria (which is being killed off by the antibiotic) and has taken over and can really do a lot of intestinal damage. Okay, so basics of the update 1. No more Antibiotics till test results come back (no good!!) 2. She is having another allergic reaction to something (more no good!!) 3. Diarrhea (messy and no good!!)

I will continue to update as we know more. Hopefully the test results will come back early tomorrow so Bailynn doesn’t miss to many doses of medication. She is taking so many different medications right now that it could be a number of things causing all of these side affects. Hopefully we can narrow it down and figure out what is causing all of these problems. Her temperature this morning was normal but around 3:00 today was 100.2 (not bad in comparison to last week, but still we get concerned with all the other problems).

Love to All Bobbi

P.S. Also Isobel is collecting Box-tops for Education off certain products for School. We would love help collecting these. They are on lots of different products and her School (West Terrace) gets 10 cents for every one collected.Thanks to all!


September 8, 2008

Bailynn’s stool analysis came back fine and we are to resume Antibiotics tomorrow at 2:30pm. She still has a rash on her torso and this is still raising concern from the I.D. Doctor.

Bailynn had her PICC Line dressing changed today and she screamed bloody murder! She also had some lab work drawn, because again the doctors think her blood it terribly plentiful!

Hopefully we will have a calm next couple of days. Our family could really use them. Thanks and Love.
Bobbi
P.S. Again we are collecting Box-Tops for Education for Isobel.

September 9, 2008

Please pray at 2:30, we are restarting the IV antibiotics then. Bailynn’s rash and hives are gone now and all looks well that way. I am just hoping that when we resume the meds that she doesn’t show any signs of an allergic reaction again.

Bailynn is still having significant diarrhea, but is finally eating better. She isn’t in the best mood today but I expect that she won’t feel 100% again until we get everything under control.

Still maintaining a fairly normal temp. also. I have cut her back on just about every medication I can. The pain medication is the only one that I am really taking slow to take her off of. She has just been on it so long that we have to be careful not to throw her into a terrible seizure from drug withdraw.

I will let everyone know how she does at 2:30. She takes another dose again at 10:30 tonight. I have asked Deaconess Home Health Care to hold off on delivery of medication to see if she tolerates it okay. We have a few hundred dollars worth of the old antibiotic sitting in our fridge that they won’t take back and the last thing we want is more wasted money and medication.

Thanks to All Bobbi


September 9, 2008

Well plans changed. This is how Bailynn prefers things. At 1:00 I took a look at Bailynn’s back and noticed puss coming out of a portion of the incision in the middle of her back. In mild panic mode I immediately went and got the Antibiotic and began administering it. While it was going I called Bob, the Surgeon, and the Pediatrician. At 2:30 we were at our local pediatritian’s office and the good news was that the puss looks surface area only. She believes it is just a portion of the back that has separated a little and has some infection from the staples and such being removed on Friday. Okay so far so good right. Oh no, we are talking about Bailynn here!! So upon further inspection we noticed Bailynn was starting to get a rash again. Yah, Allergic to antibiotic #2, of course. So now this evening we started antibiotic #3. She screamed the whole time and was scratching her skin like crazy. One of the side effects of the new antibiotic is Redman Syndrome, were your whole body gets “blush” or “red” and Bailynn looked like a tomato. Now I love tomatos but I am sure this can not be good for people. I am going to talk to the Doctor tomorrow about her screaming throughout the infusion and about her itching. At least we didn’t have to drive to Indy.

I will say, I hope she doesn’t have to suffer much more. I just don’t know how much more we can take. There is a fine line between torture and medicine. I feel much closer to torture side right now and I am not really sure when we should scream “Enough is Enough!!! Leave Her Alone!!!” To watch her be in constant pain in suffering is unbearable. To watch any child suffer is the worst thing one can experience in the whole world, but it is much worse when they are your own.

The new antibiotic comes with some lovely side effects. Bailynn will have to start having her blood drawn even more regularly to make sure the toxicity level of the medication is not too high in her system. Esintially this medication that is meant to be helping her can hurt/kill her. It’s like a bad dream our family can’t wake up from.

Isobel asked me this morning, “Is Bailynn still feeling not very well. I want her to feel all better.” I wish it was that simple. Isobel is so concerned about Bailynn.

If you are not a believer out there and you feel there could be no God because how would a God allow this to happen let me tell you there is. Little things let me know he is still here helping and watching. Little moments that give me big glimpses into his purpose and plan. One does not have to go sit in a pew to find God, just look into the eyes of a Special Needs Child. He is there. Staring softly back at us. Whispering “Here I am, can’t you see me. Don’t you hear me.” I can.

For Bailynn, Bobbi


September 10, 2008

This mornings dose of antibiotic was rough again. She turned red and scratched her self vigorously. She cried and screamed but about 30 minutes after the medication had ended she was back to normal. I gave her a shower and feed her. She immediately feel back to sleep and sleep for a while. She has been in a semi better mood this afternoon but scrunches her face and whimpers at me like I am the bad guy. It is quite lovely to feel like your child hates you. She gets the medication again around 3:30. The pharmacist says that her body may start to get use the medications side effects and lessen up on the “blushing.” I hope she is right.

I have also been instructed to destroy all the old antibiotic in my frig. I have more than $1000 worth of medication that they won’t take back. It seem like such a waste.

For Bailynn, Bobbi


September 11, 2008

Bailynn has had two doses of antibiotic without turning red!! This morning she has already had blood drawn and we are waiting for the test results to make sure the dose she is on is correct. I drained 28 bulbs of antibiotic down my sink last night. It was sickening to see all of the medication go to waste. I have one bulb of her new antibiotic left and once Bailynn’s blood results come back and we verify that she is on the right dose I will let them deliver enough for the weekend. Please pray that once we get this delivery that it is correct and we have no more reactions. The medications are just so expensive!

Other than all that, Bailynn is doing well. She is smiling a bit and playing more. Yesterday she has less diarrhea, despite that her appetite still hasn’t fully returned.

She is twisting her torso pretty badly and drawing her legs up into like a fetal position. I am not really sure why and she does act like she is still having pain. What I would give for her to be able to tell me what hurts. She also keeps pulling on her ear. I don ‘t know if there is a problem I am just going to keep an eye on it today.

“The one who endures to the end, he will be saved.”

Matthew 24:13

“For I am convinced that neither death, nor life, nor angels, nor principalities, nor things present, nor things to come, nor powers, nor height, nor depth, nor any other created thing, will be able to separate us from the love of God, which is in Christ Jesus our Lord.”

 Romans 8:38-39

For Bailynn, Bobbi


September 11, 2008

Bailynn is currently running a 103.1 fever. Her blood work results also came back and the medication levels are so high that the Pharmacist didn’t believe that she hadn’t had a dose since last night. I have been ordered to not give Bailynn her afternoon dose and to wait for new instructions and new medication amounts. Always a roller coaster at our house. These things always happen on the cusp of feeling like we are sinking into a good routine.

For Bailynn with Love Bobbi


September 11, 2008

It’s 10:00pm and Bailynn is running a 104.1 fever. She is not eating but I did get her to drink a “fake” Boost tonight. She acts like she can’t swallow well. I tried to look at her throat and it looks red, but let me tell you she screams so loud my ears ring. I don’t know if it is red from screaming or if she has a sore throat. I am going to call the pediatrician in the morning. They probably have my home phone number memorized by now!

Bob talked to the I.D. Doctor tonight also to let him know our current situation. Bailynn had blood work drawn again tonight to culture her PICC Line and make sure it is not getting infected. (She is currently screaming at the top of her lungs in her bedroom. It is not a pain scream just a “Hey, I’m in here” scream.) We haven’t heard anything about the blood work yet but it takes about 24 hours to get good preliminary results. (No lie, she is so loud I don’t know how the other girls are sleeping through it!) Her tummy is rumbling, but again she doesn’t want to eat. She is pushing everything away. I can’t say I blame her she is so hot again. The I.D. Doctor is beside himself, he really doesn’t know what is making all of this occur. Like I always say, hopefully they will figure it out soon!

For Bailynn

Bobbi


September 12, 2008

happiness will never come to those who fail to appreciate what they already have

Bailynn’s temp is down to 102 and though she still seems a bit lethargic she is looking better this morning. She drank her “fake” boost but not with her normal gusto. One of the side affects of the new antibiotic is swelling of the throat. I am investigating that as a contributing factor right now.

We have resumed her antibiotic this morning (it is currently infusing) and they delivered enough pods of medication for the weekend. Hopefully she won’t have any more reactions and no more wasted medication. We are still waiting (not so patiently) for her PICC Line culture results. Hopefully the results come back good. The last thing we need right now is an infected PICC Line and the inability to administer her IV medications.

Our family is still very tired and awaiting resolution. The weekend is a much needed break from the schedule demands of the week. Unfortunately Bob does have to work for part of the day on Saturday, but I am sure the girls will get to catch up on much needed rest.

For Bailynn

Bobbi


WHEN YOU THOUGHT I WASN’T LOOKING.

When you thought I wasn’t looking I saw you hang my first painting on the refrigerator, and I immediately wanted to paint another one.

When you thought I wasn’t looking I saw you feed a stray cat, and I learned that it was good to be kind to animals.

When you thought I wasn’t looking I saw you make my favorite cake for me, and I learned that the little things can be the special things in life.

When you thought I wasn’t looking I heard you say a prayer, and I knew that there is a God I could always talk to, and I learned to trust in Him.

When you thought I wasn’t looking I saw you make a meal and take it to a friend who was sick, and I learned that we all have to help take care of each other.

When you thought I wasn’t looking, I saw you give of your time and money to help people who had nothing, and I learned that those who have something should give to those who don’t.

When you thought I wasn’t looking I saw you take care of our house and everyone in it, and I learned we have to take care of what we are given.

When you thought I wasn’t looking I saw how you handled your responsibilities, even when you didn’t feel good, and I learned that I would have to be responsible when I grow up.

When you thought I wasn’t looking I saw tears come from your eyes, and I learned that sometimes things hurt, but it’s all right to cry.

When you thought I wasn’t looking I saw that you cared, and I wanted to be everything that I could be.

When you thought I wasn’t looking I learned most of life’s lessons that I need to know to be a good and productive person when I grow up.

When you thought I wasn’t looking I looked at you and wanted to say,’ Thanks for all the things I saw when you thought I wasn’t looking.’ (Thanks Amanda)


September 13, 2008

Okay, here is the latest on Bailynn. Bailynn is anemic!!! Yeah!!! Bailynn’s Pediatrician called her in a prescription iron supplement. Hopefully this will help. Bailynn’s I.D. Doctor in Indy thinks the anemia is from all the blood drawing. Hmmmm!!!! Maybe we should STOP taking all of Bailynn’s blood!!!The doctor even mentioned blood transfusion. Can things get any worse. I feel totally helpless in the pursuit of Bailynn’s recovery. She is continuing to run about a 102.5 fever without any break. She is still not eating well and yesterday all I could get her to consume was Boost.

She was coughing last night but after she threw up a little bit from gagging on a cough she was better. I kind of believe she just had some phlegm stuck in her throat. Today her throat seems fine and she hasn’t coughed at all. I am hoping that what ever was going on was cleared by throwing up.

Bailynn is sleeping tons and having more seizures (I believe the seizure increase is due to the relentless fever!!). If only we could figure out why she is so hot and why it won’t go away. The weird thing about it is that every time I try to give her Tylenol or Motrin her fever actually increases, so I have resolved to give her nothing. This seems to help rather than medicating her so much. Please pray that somebody can figure out why she is running a fever so constantly!!

Her back still looks good and we are grateful for that, but I still do wonder what is going on under the surface!

 

For Bailynn Bobbi


Bailynn’s Room

When one looks at our house from the street they could never imagine the lives that are lived within. Inside the door is a little room with butterflies hanging from the ceiling and flowers painted on the wall. A colorful quilt covering the bed that contains a small girl with yellow hair. Normal by many standards until one looks a bit closer. On the bedside table sits syringes and alcohol wipes where a clock or picture would stand. There is a basket of medication bottles and a clip board for records. There are rolls of tape and packages of dressing kits. There is faint hint of Hospital smell mixed in with plastic. The little girl stares out her room at a bird feeder hanging just on the other side of her window. Beautiful green and yellow finches use to adorn this bird feeder but now it hangs lonely and empty. The sun shines brightly through the trees and though the day is beautiful it will be spent indoors again. From the street our home looks simple and peaceful. Within there is a whirlwind of action. From the street no one would know that the little girl with yellow hair laid just beyond their sight. I wish the world could know how special that little girls is. I wish her story could be shouted through the streets. That just one more person could know her love and her purpose.


September 13, 2008

There is a hard protrusion coming out of Bailynn’s back. We are concerned the Hardware has broke again. We are currently trying to coordinate getting X-rays done here and sent to Indy. We are not having a ton of luck. Please pray that we can make some headway with our local medical (un)professionals.

Bobbi


September 14, 2008

Bailynn had been away from the Hospital for too long! When we realized this we imediatly took a trip to St. Mary’s tonight. Trust me Bailynn just feels that this is necessary (of course this is sarcasm). We had x-rays (which she screamed really really loud during) done of her back and they are suppose to be sent digitally (aka: by email) up to Indy for her Doctors up there to look at. I don’t know if we will hear anything back tomorrow or if we will have to wait till Monday. Right now Bailynn is only complaining when she is touch or moved (convenient because it is so easy to not touch or move her). Okay, I am tired and my sarcasim level is off the charts. I will inform everyone when we know something. For now I am just giving a big shout out prayer “NO MORE SURGERY!!!!!” Glad I could get that out.

For Bailynn (with no sleep!) Bobbi


September 15, 2008

She needs a blood transfusion (for those of you who know blood levels hers was 6.4 down from 7.1 on Friday). She is bleeding somewhere and they don’t know why. I am trying to arrange it right now with Indy. I have no words. I am so emotionally fatigued.

Bobbi


September 15, 2008

We will be going up to Indy in the morning (pre-dawn morning). Bailynn will be admitted through the ER and she will have x-rays again, tests to try to determine why her blood count is so low and white blood cells are so high, and a blood transfusion. The transfusion will take about 4 hours and I am unsure of how long everything will take all together. I am packing for one night but hoping that we will get to come home tomorrow. Right now no Doctors believe she will be there overnight but we don’t want to be unprepared so far from home.

Here are the things we need everyone to pray for.
1. GAS!!!! AHHHHHH!!!! (We just can’t afford to drive with gas prices this high!!!)

2. For the Doctors to be able to find if she does have internal bleeding and if that is making her blood count so low.

3. For the Doctors to be able to determine if her hardware in her back is still where it should be and if the infection is or isn’t under control.

4. For me not to harm any Doctors. (No, really this is probably the most important one!!)

I will do my best to update tomorrow but no promises about when.

Bailynn is “special needs” and many people use to refer to her as “sick.” I always would say “She is not sick. You can cure sick. There are drugs for sick. She is not sick.” Now, she is sick. There are drugs. Doctors can fix this. Why aren’t they? I am struggleing to see how this is so hard other than her not being able to verbally communicate her discomfort.

Thanks to everyone who reads to see little glimpses into Bailynn’s life. Thanks to everyone who truly cares. This has been a wonderful forum for me to be able to inform and release. I pray everyone’s families out there are doing well and we hope to rejoin the world again soon. For now just pray we make it to tomorrow with a scrap of sanity.

With Love, For Bailynn Bobbi


September 17, 2008

We got home around 4:15am this morning. We are tired and trying hard to recover from a day on the road and in the Hospital. We are frustrated with doctors and trying hard to coordinate everyone’s actions without much success.

Bailynn is however doing quit well. Almost as soon as she started getting the transfusion yesterday her color began to return to her cheeks (even the bottom of her feet turned pink again). She has ate well the last 24 hours and has been blowing rasberries and playing (she back to destroying pen wheels). We have changed her antibiotic yet again!!! I explained to the doctor that the diarrhea and loss of appetite all began to occur when the last antibiotic was started. I tried hard yesterday to restrain my tongue from saying things it shouldn’t. Doctors really would rather look past the person.

Now the main problems are: Her rods are quite visible (the shape not the metal) through her back. Her surgeon believed this was due to weight loss but Bailynn weighs 44 pounds (she weighed 41 pounds in May). So, not weight loss. That leads me to believe that maybe her tissue is being compromised by the infection and breaking down around the rods (not good!!). The I.D. Doctor wants the rods out right now and the surgeon wants them to stay in long enough to give Bailynn’s back time the heal and her spin time to learn to be straight. Okay, so now what right! That is what we are saying and these 2 men are not communicating making our job as Bailynn’s parents and care givers even harder. I just want to scream. They did run tests on Bailynn’s stool again (came back fine), on her urine (fine), they did a chest x-ray (fine fine). They don’t know why she is having such wonky blood results and by my opinion didn’t do anything to find out. We are frustrated beyond all belief. I am trying desperately to get a plan together and get the Doctors to relay their plan to us. No more doom and gloom. I want progress.

Bob and I have also resolved to spend as little time in the Hospital as possible. Bailynn’s life is not going to be spent in a hospital room looking through the windows.

For Her Bobbi


September 18, 2008

Bailynn had a good day. She sang, played, ate (and ate well), smiled, and even cracked out a small giggle. She looks weak but good. She has a lot of fight in her. One good day is great, but I would really like a string of good ones.

I did talk to the I.D. Doctor’s Nurse today and expressed my concerns about the lack of communication. She seems to believe that there is no break down in information!?!!?!?!?!?! I held my tongue and called the surgeons Nurse and left a message. I want to make double sure that these Doctors know that we are not ill educated. Unfortunatlly Bob and I are not the normal parents that these two men see and we will not stand by quietly!!

The goal is still to get her to one year and remove the rods. So basically next July or August, the rods will be coming out. I don’t know how I feel about that just yet but I am working on it. I know that this infection has to go more than anything.

For now, Bob and My greatest concern is the predominance of the rods showing down her back. We are fearful that they will break the skin and in that circumstance they will have to remove the rods! Her back needs to get strong and fast because basically any day we could have to have them removed.

To more good days, For Her

Bobbi

P.S. I would like to thank Mom-Mom for the visit and Pizza and Aunt Brenda for the Box-tops (Isobel says she is winning and her class can win a Pizza Party!! So far she has turned in 126 Box-tops!!! She was so excited to get more.)


September 20, 2008

Bailynn has had a great weekend so far. Tomorrow, 9/21, is Bailynn’s 7 year anniversary of Bailynn’s Brain Surgery. Her 2nd Birthday. I will never forget that day. I will write more about that tomorrow. Hope all if your weekends are going well.

For Her. Bobbi


September 22, 2008

Bailynn had blood work done this morning and it came back substantially better than last week. Her blood count is even up. Her white blood count is NORMAL??!!?! I can’t believe it. Words can’t express how much better she has been looking. This morning she enjoyed a “Baby Einstein” movie in the family room with the Twins. She continues to eat well. She still has her moments of discontent, but that is to be expected. Bob and I are still very concerned about the predominance of the rods on her back. We tried to use some steri strips to help the skin but that is not helping. We bought her a mattress topper at Target (via the Doctors advice) to help relieve the pressure on her back while she is lying down.

Everyone keeps asking how they can help. Here are some things. Bailynn wears size 5 Pampers Baby Dry Diaper. Bailynn drinks about 4 Vanilla Boosts a day (she will drink the equate brand) so we go through those like crazy. Our credit card is looking pretty shabby (we are not asking for money) so please pray we start having a way to pay that down. Bailynn’s birdfeeder was broke in the wind storm a week ago (so we need a new one of those). Nobody has to do any of this but for those of you that keep hounding me =) those are some things that can help.

For Her, With Love

Bobbi

P.S. Thanks to Autum for the Box Tops. Isobel was so excited to get mail and for it to be Box Tops!!!


September 23, 2008

It looks like Bailynn may be getting her PICC Line out on Oct. 1 when we go back to Indy. I am still waiting to hear if they are going to clear her to go back to Therapy or not. I am not sure how I feel about that one way or another. I don’t even know if she will tolerate it very well.

Bailynn is still doing well today. No big drama to report (knock on wood). I hope we are on the upward swing now. Bob and I are also hoping to set a surgery date for late next summer to remove the rods (Yeah, another vacation of sitting in the Hospital!!). It would be nice if she could make it to 18 months, but the way the rods look, I doubt it.

I will let everyone know when we know something. For Her
Bobbi


September 24, 2008

It’s a bad day. This morning Bailynn has been crying so hard and throwing up everywhere. I gave her a shower and she has finally fallen asleep. I don’t know what is going on. She was fine. Some switched flip about 8:30 this morning and she is acting like she is in extreme discomfort. I am going to make some phone calls (again).

For Her Bobbi


September 25, 2008

Bailynn is doing much better today. She is in my opinion experiencing muscle pain which is a very common side effect of the new antibiotic that she is on. We gave her some Valium last night and with good rest this morning she sees more content. She even ate breakfast well. She still doesn’t really want to be touched or moved around much but at least she is not throwing up.

I would like to thank everyone who has been sending Isobel Box-Tops she has taken 222 to school so far. She is just so excited when she gets them. The girls now look for Box-Tops on products to see if we should buy them or not! Bob is so glad to have little shoppers =). At least they are on products we use regularly.

An update on the twins. Lila and Naomi are now a little over 7 months old and Lila sat up by herself for the first time last night. Naomi is not far behind but still wanting to lean heavily on something. They are both getting big and are so funny. Isobel and Arwyn always say how much they love their 2 babies and how everyone doesn’t get 2 babies!!

Hopefully Bailynn will have a good next couple of days so that next Wednesday she can get her PICC Line removed but we are still taking things one day at a time. I am encouraged by good days.

Always For Her Bobbi

P.S. A Big Thanks to my Rotten Friend Beth Young (your so insufferable =)!!! Totally Kidding!!) Can’t wait to see you Saturday.

And a Big Thanks to Aunt Brenda for the Lovely Dinner and Cookies (which the girls wanted to eat all of and we had to stop them). We really appreciate it.


September 26, 2008

Bailynn’s day started out good but this afternoon she started throwing up everywhere again. Bob and I are just not sure what is going on. I feel like just when we are doing well that the rug is getting pulled out from under us. She is right now sitting up in her new stroller with a giant bib on incase she decides to throw up again. Her surgeons office called today and they said the rods can be removed as early as this November (because November is one year from her original surgery date.). This took me by surprise. Bob and I are going to shoot for next March or May (He starts Japan travel here again soon). Hopefully she can make it that far. I have to say I am a bit relieved it is not a year from this past July. I am not sure how much more her body can take of this.

For Her Bobbi

P.S. Jan Thank You so much for the lovely Bird Feeder. Arwyn sat in Bailynn’s room this morning waiting for Birdies. I told her they will be coming back soon!


September 26, 2008

First I would like to thank Laura (and Sarah, I don’t know if it has an “h” on the end, so sorry if I misspelled it) for the lovely supper. Everyone enjoyed it (especially the puppy chow!!). I would also like to thank everyone who has helped us pay down Bailynn’s ongoing medical expenses. You just can never know how much it means to me and my family. I still find it hard to believe that people want to help so badly and I appreciate it so much.

Lately I have felt emotionally numb. I just can’t express how much the outpouring of support and love means to us. Bailynn is our little fighter. I am just so proud of her and try to be my best for her. She means so much to me. My heart aches for those who have lost children. I feel like we came so close and Praise God she is doing well again. I can’t imagine the world being able to go on without her. My biggest fear was that Isobel, Arwyn, Lila, and Naomi wouldn’t remember her. It is beyond my grasp to think of her becoming just a memory. So I Thank You. You who are reading these updates. You who are giving our family support, food, and donations. You who care about my little girl. You are making her more than just someones memories. You are making her stand for something. Thank you.

Always For Her
Bobbi
I will be glad and rejoice in your love, for you saw my affliction and knew the anguish of my

soul. Psalm 31:7

There’s nothing that can help you understand your beliefs more than trying to explain them to an inquisitive child.
Frank A. Clark


September 29, 2008

Bailynn had blood work done this morning and screamed and cried so hard. They take the blood out of her PICC Line she doesn’t have to get poked or anything, but she still hates it. She also needs an enema today. I am not looking forward to upsetting her but am slightly relieved that her body has resumed its old habits.

Our lingering trouble still lies with the predominance of the rods down her back. Though her appetite has been wonderful the last week she is still so thin and the rods are just too large for her little body.

Bailynn had a really good weekend. We did get out a bit and Bailynn really tolerated it well. It was great for our family to get out and see friends and family.

We go to Indy Wednesday. Depending on the results of the Blood work today she may be getting her PICC Line out. I am not holding my breath and though I will be eager for its removal I will also be fearful of the consequences. I am just hoping and praying that the move to oral antibiotics goes well (and unfortunately when she does need blood work they will have to poke her to get it.)

When I know more I will update, but for now just pray the blood work from this morning comes back good. I should know by about 2:00 what the results are (hopefully).

Love to All, Always For Her. Bobbi

September 29, 2008

Okay, Bailynn’s blood results. For those Health Care Folks out there: White Blood Count 7.4 (for those not: Normal) Hemoglobin 10.8 (not perfect but getting better) Ced Rate 53 (this has to do with infection and the higher the number the worse it is last week it was 95, so, better!!) CRP 1.5 (it was 3 last week so better also!!).

Maybe we are not so foolish to say that the other medication was bad for Bailynn. She is doing so much better with the fourth change of the Antibiotic. The truth is in the numbers whether her Infectious Disease Doctor wants to admit it or not.

Thanks to everyone for their continued Prayers. Now I am just waiting to hear from the Doc. if we can have a farewell party for the PICC Line.

For Her. Bobbi

I long to accomplish a great and noble task, but it is my chief duty to accomplish small tasks as if they were great and noble – Helen Keller


September 30, 2008

Well, Bailynn’s Infectious Disease Doctor’s Nurse called this morning and the PICC Line has to stay for at least 2 more weeks (pending blood work results again). He wants her CED Rate and CRP levels to be lower. I am indifferent to this development. On one hand it would be nice to have it out and for her to be able to return to swimming and showering without having her arm stuck out of the water, on the other hand I realize that the PICC Line antibiotics are her best bet for truly fighting this STAPH Infection.

We are still going up to Indy tomorrow and we will be meeting with both the I.D. Doctor and her Surgeon. Hopefully all will go well. I am not packing anything with us (for an overnight stay). I am just trying to remain positive.

I am hopeful that her increased appetite and good attitude will get us through to the rod removal.

We have also cut our debt from all of Bailynn’s continuing health care needs by over half. Thank you to everyone who has helped us accomplishes this. It is such a relief and a humbling gift. Thanks.

Also a special thanks to Mamaw & Papaw, The Pathfinder Girls, Uncle Eric & Aunt Susan, The Welborn Women, The Tromleys, Beth Y., David & Carol, June Baker, Rev. Kev. & Family, and everyone that I may have forgotten for everything that you have done for us.

Thanks again. May your day go well.

Blessings. Always For Her.

Bobbi

P.S. Isobel has now taken 320 Box Tops to school. We are still asking anyone and everyone that can save them for her, to save them for her. She is so proud to take them to school and now her teacher (to entice the children to bring more) is giving the children one piece of candy per 10 Box Tops they bring in. Yesterday Isobel got 9 pieces of candy!! Thanks to everyone who has helped this far. (Thanks Beth, Beth, Aunt Nikki, and Laura for the recent contributions to Box Top collection!!)

When Love and skill work together, expect a masterpiece -Charles Reade


October 1, 2008

Bailynn with her flare for Drama!! On Tuesday evening, despite us having to get up at 4:00 AM/> today, Bailynn decided we hadn’t had enough drama over the past week. Upon my attempt to administer her antibiotic I discovered that her PICC Line wouldn’t work. Come to find out her the line was clotted and a Home Health Care Nurse had to come out and declot it. I got to bed just before midnight/> but thankfully the line was fixed and all is well. Who says us moms need sleep?!?!

Today’s trip to Indy went well. We were encouraged that every attempt is being made to retain the rods in Bailynn’s back long term. There is now a 60-80% chance that the rods will be able to remain in. The process of determining this is not that scientific however. This is how things are to play out over the next few months. Bailynn will remain on her PICC for approximately 2-4 more weeks (maybe more). Then we will move to an oral antibiotic twice a day for as little as 3 months and upwards of 9 months. Then Bailynn will be switched to once a day then none. During all of the process however if there is any sign of reoccurrence or “flare up” of the infection the rods will have to be removed at once. There is really no negotiation or anything else they can do at that time. We are just holding our breath and hoping for the best. That is really all we can do. Bob and I so badly don’t want to have to watch her be cut on again, but that is truly out of our hands.

Overall the trip was not that bad. Isobel, Arwyn, and the Twins all fared well in the car. We went to the

Children’s Museum for a bit before Bailynn’s appointments and made it home just at bedtime. The dogs were a bit unnerved from being in their cages all day and somehow Bridget (Bridget is one of the puppies) collar has gone missing (I just hope she didn’t eat it!! No, really Bess, her mom, ate like a whole rope one time!!).

Bailynn is still doing well and getting better everyday. Right now we have to work on getting some weight put back on her. Though she is not looking as puny, she is still super skinny.

Thanks to all.

For Her.

Bobbi

Life is either a daring adventure or nothing.

Helen Keller

Most of the shadows of this life are caused by our standing in our own sunshine.

Ralph Waldo Emerson


October 3, 2008

Bailynn had a pretty good day yesterday. She only screamed and cried at me when I gave her a shower. I am not sure if it is truly painful or she just doesn’t like being messed with so much.

On a slightly down note, we did find out that Bob is leaving for Japan again on Nov. 14 and won’t get home till Dec. 19. Unfortunately this will be a crucial time in Bailynn’s care with the move to oral antibiotics. Right now we are trying to work out a form of constant contact between him and I just incase there is an emergency and he would have to come home. Thankfully when he gets home he will have about 2 months before he flies out again on Feb. 9.

We are going to push to keep Bailynn on some form of antibiotic until he is done traveling so that I am not here without him if something would go wrong.

Never a dull moment here. I often pray for peace.

With Love. For Her.

Bobbi

P.S. Thanks to Jan and Aunt Mindy for Box Tops. We are now at 374!! Also thanks to the 2 lovely women who brought dinner this week. We so appreciate everything.

I can do all things through him who strengthens me.

—Philippians 4:13


October 4, 2008

Bailynn is having a pretty good weekend so far. She has done a lot of screaming at me today but I told her there is nothing she can do about me messing with her, so to just get over it.

We had success in finding Bailynn shoes. Some of you may not know how incredible difficult it is to put shoes on Bailynn, but it is a nightmare. She curls her right foot badly when I try to put her shoes on and her left foot is slightly bigger than her right making it difficult to fit shoes properly. Well good old Converse came through for us and Bailynn is now the proud owner of Hot Pink and Pink Polk-a-dot “Chucks”!! They are so cute and the tongue opens wide enough to get her foot in good.

The next big thing for Bailynn is blood work on Monday morning and again we are watching for her infection numbers to come down.

Hopefully the weekend will go smoothly for Bailynn and I will update more later. For Her.
Bobbi


October 6, 2008

Though the weekend went well, today has been a change of direction. Bailynn’s blood work results did not come back as good as hoped. Some of her infection numbers have spiked again and her hemoglobin (blood level) is down lower than last week. We now have to monitor temperature again and to watch her for signs of a cold or infection. She looked tired today but held a good temperament even when having her dressing changed on her PICC Line this morning.

The I.D. Doctor is not in his office on Mondays so I will not get to talk to him till tomorrow about the results. For now we are going to avoid (even more) any situations that will bring a high number of germs around Bailynn. This being hard with Isobel going back and forth to school, but we always manage. (Isobel’s birthday is Saturday. She will be 6 and she has a wobbly tooth. She couldn’t be happier!!)

Here are the blood numbers for those of you that under stand them. Bailynn’s Hemoglobin was 10.3 (blood level was 10.8 last week) Her CED Rate is 35 (this is infection and it was 53 last week, so this is getting better) Her CRP is 4.1 (this is infection also and it was 1.5 last week, this is the wrong direction 1 or less is normal)

Thank you for all your continued prayers and support. I don’t know what else to say today.

With Love, For Her

Bobbi

“I believe God is managing affairs and that He doesn’t need any advice from me. With God in charge, I believe everything will work out for the best in the end. So what is there to worry about.” Henry Ford


October 7, 2008

Bailynn is running a slight fever of 100 degrees. She is acting a little wimpier than the last couple days. She is not eating as well either. Isobel and Arwyn are sick so maybe that has something to do with it but Bailynn is not acting “sick.” I can’t get a hold of her Indy doctor and I am very frustrated about his lack of communication right now.

My worries are growing and as Bob’s departure date is getting closer I just really want some of these issue solved. Especially before he leaves. Even the Home Health Care Nurses are concerned with her seesaw blood levels.

Please continue to Pray.
Always For Her.
Bobbi
“Happiness is not a destination. It is a method of life.” – Burton Hills


October 8, 2008

Bailynn continues to not want to eat and this is no good. The rods in her back seem to more prominent everyday and I fear that one day I will roll her over to check her back and see metal. At that point the battle is lost and the rods are as good as gone. At that point my girl has to undergo her 6th surgery in a matter of months. At that point I will have to accept that Bailynn will start her course of having scoliosis again.

She needs meat on her bones. She has a ton of fight but not enough calories!! Our “Fat Free” world doesn’t help much either. I am sure there are a lot of us out there that would love to share our extra with her =).

I did finally get to talk to Bailynn’s I. D. Doctor’s Nurse this morning. She claims they just got Bailynn’s blood results. Yah, right!! Okay, so the doctor should be in any time now and hopefully will be calling me to let me know what he thinks. I don’t know what to expect but I am hoping that he knows why the blood work went in the wrong direction. I will update more when I know more.

Thanks so much to all.

For Her.

Bobbi

. For you have need of endurance, so that when you have done the will of God, you may receive what was promised. Hebrews 10:36 NASB


October 9, 2008

The consensus is that we are waiting till Monday to get blood work results again before Bailynn’s I.D. Doctor would do anything. He was discouraged by her results this past Monday also and is hoping that the numbers turn around this week. Bailynn did start coughing today but is eating a smidge better. The girls and I went to Isobel’s School today and took cookies for Isobel’s Birthday. The kids couldn’t have been sweeter and they were so excited to get a treat. All of children were so good to Bailynn also. Many asked how old she was and her name. They wanted to know what grade she was in. They were all very respectful and I couldn’t get over all the little boys around the twins telling me how cute my babies were. It was a great experience. Isobel says she is 6 now and I told her not till Saturday but she disagrees. Close enough.

Bailynn’s back continues to look worse. I wish there was an easier solution than surgery. I wish this was over for her.

For Her.With Deepest Love.

Bobbi


October 11, 2008

Happy Birthday to Isobel !!!!

Bailynn has had a good day and seems to be feeling well enough. She is eating remarkably better than the beginning of the week and has had a much better mood. I am anxious to see her blood results on Monday. Our only concern health wise with her (beside the staph stuff) is everyone in our family has a cold and she has started coughing. Just what see needs. Poor Lila was up half the night last night crying and had snot pouring out her little nose. We have been really careful to keep Bailynn a good distance away from the sickies but we have to take care of both parties so of course there has been cross contamination.

I await the day when I don’t have to hook large syringes up to her arm anymore. I look forward to not worrying about the rods coming out her back. I can’t wait for the day when I don’t dread looking at her back and fearing what I may see. I know that day will come. I can’t wait to see her happy again. The largest portion of my prayers goes toward her happiness and comfort. I wish with all my soul for Bailynn’s heart to be full. I want her to know that I could truly not love her more. My insides ache with worry for her and her well being I just love her to no end. To the moon and back again is a speck. She is a true and utter Joy. Her smiles fill me up like a good meal. Her laughs are like Sunshine for the soul.

The weekend is going well so far, may it continue to do so.

For Her

Bobbi


October 13, 2008

Once again, I find time late at night when all the girls (and the husband) are in bed to update. Today has been a good and bad day on the Bailynn front. I will start with the good.

Bailynn’s Blood Work: Her Hemoglobin was 11.3 (Yah!!! Blood Volume is up!!!), Her Ced Rate was 25 (Down from 35 last week. Again this is infection and the numbers are practically normal!!), Her CRP Levels were 0.9 (1 or less is normal and this is the one that was 4.1 last week!!!). Bailynn is looking good. She is eating well and even smiled at me when I gave her a shower tonight (a first in weeks).

On to the bad, and trust me I would rather leave it out, I think I see metal coming out of a small opening in her back. I am going to call doctors in the morning and try to have her local pediatrician take a look at it. For now I placed a stery strip across the area and tried to pinch the skin together the best I could. She only complained a little when I messed with it. Please pray that I am wrong. If it is metal the rods are as good as gone. She won’t have them a year until Nov. 12th. What a year. Looks like another trip to Indy is probably in the works (we weren’t supposed to go back until Nov. 11th). I don’t know how much more Bailynn’s little body is going to handle and the thought of her going under the knife again is like a bad nightmare that our family can’t wake up from.

So that I don’t leave this on a sad note, Naomi sat up by herself today (I think Lila was as excited as I was) and Isobel took 424 Box-tops to School (that’s right my girl is going to win that Pizza Party!!). She also came home in a Birthday Crown from her Teacher and was so excited.


October 14, 2008

With Love. Always For Her. Bobbi

It is metal.

Surgery is at 3:00 tomorrow. Rods are coming out. (Hey, Beth T. put her back on the Spring Riding Hope Schedule =). )

Somebody pinch me.

The only good to come of this is that as of tomorrow infection is gone and I won’t have that worry while Bob is in Japan. I just can’t believe she is going on her 6th surgery in less than a year. I wonder if they have a punch card or something. Like buy 5 surgeries get one free?

I will update some time tomorrow afternoon/ early evening when I get to a PC. Please pray that things go quickly and her healing time is fast.

We should be in the Hospital (St. Vincents) about 3 days. Thanks to All.
With Love. For Her.
Bobbi


October 15, 2008

Bailynn is out of Surgery. The incision is from her neck to her butt crack, again. We have not got to see it yet and won’t until at least tomorrow. The surgeon said that once again we caught it just in time. If the metal had actual broke through to air the infection would have spread like a wild fire. God is good. She did well and is resting in her room right now. The surgeon thinks she is going to be fine without the rods but will need some kind of temporary bracing for the healing period. She looks good and already has been playing with her pen- wheel. I think her body is releaved to have the rods out. The surgeon gave us the rods. We have them in a little zip-loc bag (how weird, especially with all the trouble they have caused her). He thinks she will be able to go home on Friday and that is what we are hoping for.

Bailynn will have to remain on antibiotics for some time still. We are unsure of the time frame but we know that they are going to be extra precautious.

The other girls are doing great and dealing well with another hospital stay. They were just so excited to watch Nickelodeon this afternoon (since we don’t have it at home).

The girls and I are going back to a hotel for the evening and will be back with Bob and Bailynn in the morning. Please pray that they both get rest in the hospital which is nearly impossible. Please pray that Bailynn wants to eat, right now she needs nutrition and calories in her body to help her recover. Also pray that this is it. That she is done! We don’t want Bailynn cut on anymore!!!!!!!

Thanks to everyone who has brought us food, given us funding, and wrote or called with support. I am unable to express my full gratitude for everything and everyone that is in our lives. You all help us fight this great fight and finally I do feel that we are winning.

69 / 486

For Her.
Bobbi
P.S. Thanks to Karen for taking care of my furry children!!


October 16, 2008

Bailynn is eating, playing, and watching cartoons. Who could ask for anything more?! Bob said the night went well despite a case of hick-ups and Bailynn has tolerated everything with her normal unfaltering strength. She is eating her breakfast right now and is suppose to sit up in her Wheelchair some time today. She hasn’t really had much pain at all and we are just hoping that she tolerates the transition to the chair well. Hopefully we will all get to hop in the “Rocket” tomorrow and head south. If she keeps doing so well I know that will be the case.

It truly is a relief to have the rods out and know that the infection can do no more harm to her little body. Now begin the prayers for her body to remain in its new found straight state without the rods for support. Her muscles are so weak on the right side of her body, from her left side of her brain being removed 7 years ago, that we can only hold our breath and wait to see what happens. Bailynn’s surgeon was encouraged by the about of bone which has fused in her back to help maintain the shape. Please continue to pray that through therapy and temporary bracing that the rods are gone for good!

Thanks to all. Always For Her.
Bobbi
P.S. Her Pen-wheel has seen better days =).


October 16, 2008

Bailynn has had a fairly good day. She started looking really agitated this evening and the nurse took a look at her throat and it is extremely red. This is probably from the breathing tube she had during surgery yesterday. I sat her up in her Wheelchair and man did she SCREAM!! She was not happy at all and when I finally got her calmed down it was time to get back in the bed. It just didn’t go well but hopefully it was due to the fact that her pain meds were almost due when we made the move. Tomorrow I will wait till right after a pain medication dose to try and move her. We are still hoping to go home tomorrow. Unfortunately when you sit in a hospital there is little contact with the doctor and the nurse doesn’t really know what is going on she only goes by the chart. (Sorry I use she a lot for the nurse we have had the occasional male nurse, but it is terribly rare.) Bailynn has continued to eat well despite it all and play. Her and the girls watched Shrek the Third today and she was excited when it started.

We have only had a small break down in communication today. We thought her I.D. Doctor was going to come and see us and give us new game plan for the Antibiotics now that the rods are out. He was even on the floor. Well, no one informed him that we were here!?!? Okay, I called his office yesterday and let them know she was having surgery to remove the rods. Anyway, we are hoping to see him tomorrow now before we leave. I don’t know what his new course of action will be, but I am anxious to hear it.

Thanks. Love and Blessings. For Her. Bobbi


October 17, 2008

We are heading home. Just waiting for all the papers to be signed and for all the monitors to be disconnected. I will update when we get home.
For Her.
Bobbi


October 17, 2008

We are home!! Bailynn did great she only fussed a bit when I moved her from the “Rocket” to her bed. (Granted she was over due for her pain meds by an hour. So fuss on!) When we got home she ate some Linner(Lunch+Dinner) and now is watching a Barbie Movie (She loves Barbie Movies!!). She has been smiling and giggling. She loves getting home as much (if not more) as everyone else does.

She is already trying to curve/ lean to the side again. I had to stuff her car seat with blankets for support for the first time in almost a year. It is so disappointing.

Now we are trying to wind down and I am sorting 7 peoples worth of laundry, trying to entertain 4 overly hyper dogs, and work on getting back into our routine. Hopefully everyone will sleep well tonight (I know I will God willing!).

Big Thanks to Mamaw from Bess, Charlie, Bridget, and Minet. Big Thanks to Carol Dazey for Supper tonight. Big Thanks to everyone for Praying continually for our little Angel. She Thanks you.

For Her. Bobbi


October 18, 2008

Today I feel pure and utter defeat. Bailynn is twisting and curving as hard as she can to the right again and I feel it is only a matter of time before she gets her spine into the state of scoliosis it was before. There is a deep guilt and despair for her harboring in my gut and I just feel so helpless. The thought of her having to have the rods put back in in a year is total dread. However, there is nothing to do but move forward. On top of the extreme leaning Bailynn has a horrible bad cold. She is coughing phlegm and has snot coming out her nose. We slept so little last night with our household coughing and waking up on a regular basis. I can only hope for a few hours of consecutive sleep tonight.

Other than all that Bailynn is doing quit well with pain management. She has went well over the allotted times for the next dosage of pain medication without discomfort. I am curious how much she actually needs, but I don’t want to push her too far. She is sleeping well in little snack size naps and is still eating remarkably well for just having surgery a couple of days ago. The other girls were very excited to sit at home all day in “squishy” clothes (as was their parents!).
Please just Pray for her back. Pray for its stability. Pray for our sanity as these next few weeks play out. We go back (again) on November eleventh to see the doctors and express our new concerns. Please Pray for her coughing to end. There are little over the counter medications she can take since she has such severe epilepsy.

For Your Undying Support. And Always For Her.

Bobbi


October 19, 2008

Today was good and bad. We attempted to sit Bailynn in her wheelchair again with mega stuffing and she did do fairly well, but it looked ridiculous. She ate well. We have decreased her pain medication almost in half and she is acting fine. I changed her dressing and there is little drainage and not much fresh blood. She played and laughed but is continually coughing. There is so much phlegm in her throat that she gagged and threw up tonight. The twins have the cold also and last night was another long one. Lila decided her new bedtime is midnight and even the puppies decided that 3:30 am was a good time to go potty. We are tired to say the least. Bob goes back to work tomorrow and hopefully all will go well. Bailynn’s home health care Nurse is coming tomorrow sometime to do blood work again and get a new post surgery base line. I am hoping infection numbers are all normal. We are still administering the antibiotics via PICC Line and she is still tolerating it fine (which is a good thing).

We missed the HopeFest for Riding Hope this weekend and I hope it went well. Our thoughts were with our Horseback Riding Family. I’d love to hear how it went.

Please continue to Pray for Bailynn’s cold to go away soon and now for our new surgery debt. I even started to receive bills from the RehabCenter this week (we haven’t been able to go since the end of June with all the surgeries but their billing lags a bit). I know everything will turn out okay but I am a chronic worrier =). Please also Pray that we can get Bailynn’s temporary back brace measured and made quickly once she is well enough to go and get measured for it. It will not prevent a curve from occurring it will only help to stabilize her back.

I will update when I get lab results tomorrow. Thanks to all.

For Her.

Bobbi

“Love begins at home, and it is not how much we do…but how much love we put in that action.” Mother Teresa


October 20, 2008

Honestly, I didn’t know where to start this evening. I got the blood results around 2:00/> and till about 15 minutes ago was on and off the phone with doctors. Bailynn’s levels were not good. Her Hemoglobin was 10.1 down from 11.3 last week, but understandable knowing she lost blood during surgery last Wednesday. Her CED Rate was 66 up from 25 last week (again this is infection level and not good!! the highest it has been in weeks.) Her CRP Level was normal last week at .9 and this week has shot up to 6.0 (this is infection also). Her white blood count was 7.1. I am beside myself. The I.D. Doctor did reassure me over the phone that the levels should spike a little after surgery, but this is higher than expected. Isn’t everything Bailynn does in life different than expected! The Doctor expects her to be on PICC Line antibiotics for 3 more weeks and then he will still probably move her on to oral antibiotics. This is because there is a chance that the infection is still in her back (or elsewhere in her body). He believes she can be “cured” now (his words not mine) of the infection. Good to know he didn’t before!?!?

Other than all this chaos she has been in a good mood today. She was happy to get back into the routine of taking Isobel to school and picking her up. She didn’t scream at her Home Health Care Nurse. She ate well. Now she is still coughing her head off with little relief, but she slept better last night.

My mind feels like the “Tea Cups” at Disney World. Bob’s date of departure is inching nearer. Bailynn is not fully well yet. Our home seems destroyed with all the distractions of going back and forth to the Hospital and caring for Bailynn at home (now others would disagree but I am a terrible neat nick and when something is out of place it ruins my day!!) Our lawn and landscaping have been neglected for a whole year now and bills from all these Hospital “Vacations” are mounting. Have you joined me on the “Tea Cup” ride yet =). All this and Christmas is just around the corner. I hope next year brings our family peace and health.

Always For Her.

Bobbi.

Ps. 145:8 — The LORD is gracious, and full of compassion; slow to anger, and of great mercy.


October 21, 2008

Bailynn’s coughing diminished greatly today but her pain level increased. I can tell she is having more muscle spasms as her back is trying to heal. She cried a lot and didn’t want to eat much. It crushes me to watch her twitch and cry. What I would give to take it all away. Bailynn has had a total of 12 surgeries over the course of her life and none of them get easier. Often I find myself numb and unable to express true emotion. It is my way of dealing with it all. My heart is truly breaking for her, but my mind is reminding me to keep it together. The other girls help. Isobel and Arwyn express how much they don’t want Bailynn to have “pokies” and really stand up for Bailynn. Isobel will say “Bailynn hurts, Mommy” when Bailynn is crying a lot. She even tries to make Bailynn feel better by getting her a toy she likes or requesting a particular movie. It is incredible how good it makes me feel to see how compassionate Isobel and Arwyn are to Bailynn. Their lives will be impacted so much later by what they are going through now with their sister. A true bond that not many can understand. I feel our family is a team working towards the ultimate goal of happiness and health for all.

It is odd now to look at Bailynn’s back and not see the rods protruding up and down.

The babies are still suffering from stuffy noses and coughs as well but at least napped a little better today. I was able to shift some winter season clothes into the girls closets and some summer items out.

Arwyn had a rough day missing Isobel today. I told her before she knows it the Twins will be up and playing with her but she just wants to go to school with Isobel! Isobel is so excited she has 200 box tops to take to school tomorrow. She is so hoping to win the Pizza Party. I am doing everything I can to help and thanks to all of you out there that have been helping also.

Keep Praying that we can get rid of this cold and for Bailynn’s pain managment. For Her.
Bobbi


October 23, 2008

Bailynn’s pain management is going better but seizures are back in the picture and now with no rods to support her back she is throwing herself into hard curves while seizing. I am trying hard not to be so disappointed that her body is curving again but it is difficult after seeing her so beautiful straight for almost a year.

Bailynn’s appetite is still not where it normally is and has diminished as this cold wears on. Her and Naomi seem to be taking it the worst. Both cough all night and neither have a good way of clearing out all the phlegm.

To top it all off, our pediatrician is out for 2 weeks and there is no one locally to call about Bailynn’s cold dragging on.

The next few days I am hoping that Bailynn will improve enough to sit for longer periods of time. She is getting fitted for her new back brace on Tuesday. They are going to have to make a mold of her and then use the mold to make the brace. I am sure she is not going to be happy with this process. I know I wouldn’t with an incision from neck to butt and somebody casting me. She is tough and hopefully she will do well.

Thanks to all. I can never say enough how much your support means to my family. For Her.
Bobbi


October 25, 2008

Today was a bit better. Bailynn is still fighting the cough that doesn’t end and poor Naomi sounds horrible. I tried to move Bailynn to the Family Room to watch a Barbie Movie with her sisters but she was not having it. I returned her to her bed and she smiled at me (how rotten!!). She even ate a smidge better today and played well with her toys (still all lying in her bed however). I sat with her a bit this morning while the twins were napping and the other girls were watching a movie and her birdies are back. We watched a number of Finches eating happily off her birdfeeder. She was so excited to see them return. I really want to see her sitting up more again but she gets so frustrated trying to support her body. I believe that the rods being in her back for a year (almost) has actually made her right side weaker (because she hasn’t even had to try to use her muscles). I just am beside myself with her struggles and actually look forward to having the rods put back in a year from now. I know you are probably thinking I am crazy, but I just can’t see her crooked. I can’t knowing that I can help her, knowing that her body can have the relief. It is just daunting to think about her going through the surgery again, us having yet another expense for surgery, and her definitely being in the hospital for a whole week (bye bye to Bob’s vacation days).

I know not many know how bad her curve was before the surgery. She had a 76 degree curve to the right and 112 degree curve forward. Her innards were being squished, her oxygen intake compromised, and her ribs protruded out the front. I will not allow her to live like that. I will not let her suffer. She will have the rods if she needs them despite my fear of them and all the complications to date. I do believe the surgeon has learned his lesson and now would know how to do things right from day one, but God will lead us to the decision over the next few months. I am praying that we she will remain strong and trust us to make the decision as we trust him to guide us toward it.

Please pray for her seizures. Over the years I have become numb to them. It hurts, don’t get me wrong, but I have to care for her. Seizures are a part of her and I love her. We call them “yuckies” for the girls. Isobel will ask what is wrong and we simply say “Bailynn is having a yucky!” Isobel is a child and I think it helps her understand that it is something that we don’t like but not something to be frightened of. My fear with the seizures is the way that Bailynn contorts her body. Bob and I believe that one of the primary causes of complications with the rods has been seizures and the strength she has during them. She throws herself forward so hard and so fast. Her spine as it is trying to heal just doesn’t need this constant stress and there is nothing we can do to prevent it. She still takes two anti-seizure medications and has the VNS implanted (vagus nerve stimulator). There are no more options for seizure control. Even with this she is having two to three seizures a day.

Please keep her in your prayers.

For Her.

Bobbi

* If you could do anything and you knew you would not fail. What would you do? (Think about it)


October 28, 2008

Well, it is Tuesday, and today is the day we go and get Bailynn molded for her new back brace. We are going to a place on the East side of Evansville/>/>. At least we don’t have to drive far. It will take some time to get the brace and I am sure Bailynn is not going to tolerate it well (she has never tolerated a back brace well). I can only hope that it gives her the healing time and stability she requires to possibly not need rods again (though I am doubtful that anything other than rods can help her be supported properly).

Our family, mainly Bob and Naomi, are still fighting a never ceasing cold. Our pediatrician is still out but I am going to call her office today and see what needs to be done for poor Naomi.

Yesterday was also blood drawing day. Bailynn levels came back much better. Her Hemoglobin was 11.1 (up from 10.1, so Good!!) her CED Rate was 37 (down from 66, so infection levels are down, still not normal, but down) Her CRP level which shot through the roof last week to 6.0 was 1.6 this week (less than 1 is normal so she is close!!) We still are maintaining our Nov. 11 (Veteran’s Day) Indy appointment and it is still anticipated that the PICC Line will be removed on that date if the infection numbers are down in the normal range. The good thing about that date is Isobel has no school, so she won’t be missing again!! We then turn around on Monday Nov. 17 and go back to Indy for routine Riley appointments with Bailynn’s Neurologist and we are going to start seeing a Pulmanologist regularly. At puberty Tubers can start forming in Bailynn’s lungs. We need the Pulmanologist on board for a base line of lung health and in preparation of this occurrence. They are able to remove the Tubers from the lungs (the eyes, skin, and lungs are the only organs they can remove them from with lasers). Bailynn has Tubers (currently) in her heart, brain, kidneys, and on her skin. Remember, they can form in any major organ at any time and grow over the duration of her life. Hopefully getting the pulmanologist now will be beneficial in the future.

Please also continue to pray for Bob’s travel schedule. Due to the suffering economy there is question as to whether or not he will be sent to Japan/>/>. Seeing that a very important part of his job is there he is questioning the ability to do the job to the best quality without being sent to Japan/>/>. Everyone is having to make changes and deal with unexpected alliances to get jobs done for less $$$ hopefully his quality of work will not have to be compromised if he does not travel to Japan/>/> (Bob can’t read: Shh, I secretly don’t want him to go, but don’t tell him. Okay, so maybe he knows =)!! )

Always For Her.

Bobbi

P.S. Isobel is still asking for Box Tops from anyone out there that is, or still is willing to help in our quest for a pizza party!! Thanks to everyone who has supported her in this endeavor so far! Our mailing address is

5715 Upper Mount Vernon Rd./> Evansville, IN. 47712

(Support our Postal Service!! Oh, and buy pretty stamps trust me it will make you feel better. For those of you who don’t know my mom is a Postmaster so I love stamps.)


October 29, 2008

The fitting for the back brace went better than expected. The man who did the fitting decided to only do measurements instead of molding her. I believe he realized that she would not handle it very well. The brace will be done in about one week and hopefully it will help. Unfortunately Bailynn can no longer sit in the new stroller that we got her just a few months ago. It makes me sick. I just want the rods back so badly. She can’t sit in anything or anywhere. She sits so badly in her car seat that I believe she sat better in it a year ago prior to the rods. Tonight I broke out her wheelchair and got everything realigned to start using it again. The wheelchair has better trunk support and a pummel to keep her booty back! Hopefully with the new back brace I can use the stroller on occasion until the rods can be placed back on her spine. Yes, I am saying when not if now. I will not stand for her not being able to sit anywhere. She isn’t even trying. She looks like she has osteoporosis. Deep Breath…. Okay. It is going to be fine. There is a reason that she is having to wait and having in to endure all of this. I am just waiting for the reason. The purpose. Does anyone see it? If you do will you let me in on it?! No, really she is holding up well despite it all. She is eating well, pooing well (to well), she is back to playing (just not sitting up, seeing as she can’t, I digress) and she is taking essentially no pain medication. She is the champ!

We are heading down to Tennessee on Friday to visit my Parents for Halloween and to go to Nashville’s Zoo on Saturday (pending Bailynn’s mood and weather). We are all looking forward to the brief escape from everyday life and I am hoping Bailynn does well with the travel and not being in her own bed (she loves her own bed!). I am sure all will be great and just praying that the weather is good.

I need to give a big Happy Birthday to Aiva Bechtel. This past Monday she was the Big 1 year old!!! So, HAPPY BIRTHDAY!!!

Also, Kate is having her baby tomorrow and Isobel and Arwyn are so excited to go see their new cousin tomorrow night (if Aunt Kate is feeling well enough). All in all it has been a busy week and is building up to an even busier weekend.

Thanks to Cathy and Wayne Young for the Box-Tops. Isobel was thrilled to no end that she got more in the mail. I will let everyone know if Isobel wins the Pizza Party or not.

Thanks to Karen for dinner yesterday it was great. Bob said it was a Thanksgiving preview and if he is gone to Japan it may be the closest he gets to that kind of food this year. Thanks Again.

Always For Her.

Bobbi

Seek the Lord and his strength;
seek his presence continually! Psalm 105:4

What lies behind us and what lies before us are tiny matters compared to what lies within us. -Emerson


November 2, 2008

The trip to Tennessee went great. The people there are so kind and we always have a good time.

Halloween night was better than expected. Bailynn did continue to hunch forward badly in her chair but there is just nothing I can do about it. It does sadden me how “sickly” she looks all hunched over. She looked stronger straight. The staph infection has taken its toll on her no doubt. Her eyes still are dark and sunken and her skin tone is not back to normal (but better).Isobel was Tinker Bell for Halloween and Arwyn was a

Ballerina/Princess/Fairy. Bailynn went as Bailynn. Come on how many girls can survive 6 surgeries in less than 12 months and staph infection. To me she went as a SuperHero. SuperHero Bailynn! Lila and Naomi being small also went as themselves (seeing as they don’t need and are incapable of eating candy, this suited them fine)

Oh, I should add that Bob and I have definitely come to the conclusion that we need a full size van. You should have seen poor “Rocket” trying to get us to TN. with 4 dogs and 5 kids. I may add also that 3 of our dogs get terrible bad car sickness and throw up the whole way there!!! Bob loves to travel with the dogs (sarcasm). I could barely see out the back window. When the back hatch was opened all of our stuff looked tight as bricks. It is astonishing how much 7 people need for 2.5 days, especially since 2 are babies!!!

On Saturday we headed to Nashville’s Zoo. It is so nice and since we are members of Mesker Zoo here we got in for free (added bonus!!). The Zoo was so peaceful and the weather was beautiful. I gave Bailynn a good dose of pain medication before the trip so she did well (still hunching!!)

Sunday/Today we took an adventure to Opry Mills and the girls had a great time walking around and window shopping with Uncle Jacob, Aunt Leahanna, and Grandma.

We got home late tonight and rushed to get everyone cleaned up and tucked into their beds. They were all so glad to see their own beds! Tomorrow is Blood work day again. Hopefully Bailynn’s infection numbers will still look good.

Our next trip to Indy is a little over a week away and Bailynn’s back brace is done and waiting for us to come pick up. There seems to be a lot happening but still no plan as to how to build up her muscle strength or what we are going to do in the future. One day at a time. Hopefully the PICC Line will come out on the 11th as planned. Oh, I forgot. Bob’s trip to Japan for Nov-Dec got canceled!!!! YEAH!!!!! But it is okay to act depressed for Bob. But YEAH!!!! He still does have to go in February but at least the babies will be almost/maybe walking by then, wait, AHHHHHHH! No, all should be fine, right? I am just glad we get to keep him for Turkey Day!

Thanks to Rev. Kev and his wife. God always knows. It amazes me. We love and thank you. For Her.
Bobbi


November 3, 2008

The tests are in and blood looks pretty good if I don’t say so myself!!

Here are the results. Bailynn’s CED Rate was 37 last week and is down to 26 this week!! That is a mark able improvement and almost a “normal” infection level. Bailynn’s CRP, drum roll….., 0.8, 1 or below is normal. Yeah, Bailynn is normal!!! Well, as close as Bailynn is going to get =). The only number that didn’t look better was her Hemoglobin, last week it was 11.1, up a little, and this week it is 10.5, down a bit. I don’t know. I guess that is semi typical, but I will have to wait and talk to the I.D. Doctor.

Hopefully the blood work will be good again next week and she can get the PICC Line out!!!! We will find out a week from tomorrow. She will also be getting her stitches out a week from tomorrow (from the last surgery). I can’t believe it has already be 3 weeks since her last surgery. Time just doesn’t stop for anyone.

Bailynn was moody today. She normally is on the day the Home Health Care Nurse comes. She really hates her PICC Line dressing being changed. The worse part of it is removing the old stuff (too much sticky!). She didn’t even want to try to sit today. I am feeding her everything lying down and it just seems ridiculous. She is keeping her legs drawn up and her head tucked down. She cries when I try to straighten her out or correct her posture in any way. She takes small shallow breaths when she is sitting due to all the pressure on her lungs. It makes me take deeper breaths, kind of like the urge to cough when someone else coughs. She didn’t exactly like her shower tonight, but was much more pleasant this evening lying on the couch surrounded by her crazy family.

She is not napping well and is still having seizures throughout the day. Every seizure makes my heart stop. I just so badly fear her hurting her back even worse. Bob and I are still working to get her appetite back up to snuff, but she is so stubborn. I tease her that she got her hard head from my Nana (my dad’s grandmother). It is in my mind genetic. She did play happily with a Furby that Arwyn found today. Bailynn has always been fond of Furbies. Who wouldn’t right!? They are terribly obnoxious and loud. These are some major items of perfection in a toy to Bailynn.

Please just continue to pray for her healing and her need to lean. Please also continue to pray for our ability to financially support her need to go to the doctor so often. Please keep in your prayers the fact that she will be coming off the antibiotics in a week. I don’t know if it will be necessary to move her to oral medication now or if the I.D. Doctor will drop her cold turkey. We will have to wait and see. Please also pray for Bob to get some rest. He looks so tired and I know he wishes he could do more for her, like he isn’t doing enough already or something. He would give her anything. She is Daddy’s little girl!!

Tomorrow I am taking her at 4:30 to go and get her back brace. Maybe she will tolerate it okay. Okay, no, probably not. Maybe she won’t scream when she has to wear it. Yah, probably not that one either. Oh well, maybe. Right?!? Think positive.

For Her.

Bobbi

P.S. Still Collecting Box Tops!!


November 5, 2008

Well, the back brace is here and it is of course pink. Bailynn doesn’t like it being put on but is semi tolerating it while it is on, but just like in the past she doesn’t try to use her muscles while wearing it, she just kind of puddles in it. It is also not improving her shoulders being hunched over or her head drooping down. So all in all I am not sure that it is going to do much of anything to help or improve. (Side note to Beth T. the guy who did the brace knows you. Tom Whitehurst.) Okay, well we have it and we will show it to the surgeon on Tuesday to see what he thinks and whether or not there are any other options for her head and shoulders (knees & toes!!).

Bailynn has been fussy at being jostled around but there is little option to caring for her. I took 4 of the 5 girls with me to vote yesterday morning and they all were very patient (the staff at the voting facility was astonished!). Even Bailynn tolerated it pretty well and I was glad to miss the evening crowd and get it over with. Today Bailynn is actually lying on the couch again watching a movie. Arwyn is bebop in around the house, Naomi is drinking a bottle, and Lila is spinning in her exersaucer. It is pretty calm here actually.

Please be praying for Miss Arwyn. I took her to the Doctor yesterday because Bob and I believe she has an inner ear problem. She falls a lot (more than your average 3 year old, trust me) and she has had problems in the past, with speech delay and pressure behind her ear drum. Well, yesterday her left ear had negative pressure behind it and her right ear was flat. Her pediatrician wants her to go and have another hearing test (her last one was when she was 18 months old and she had mild hearing loss). Then if there is still a problem she will have to go to an Ear, Nose, and Throat specialist. Arwyn also has a lot of sinus issues. Maybe it is all connected.

Bailynn incision is basically healed. She has to get the stitches removed next week and then hopefully she will be done for a while. She is slowly eating better. I am waiting for her to be able to return to therapy and get some strength back. I know this is all going to take some serious time; she has been cut a lot in a matter of months. Her muscles are basically destroyed and need time to recover properly. The waiting game. Never fun.

Always For Her.

Bobbi


November 6, 2008

Bailynn is doing well. She slept better last night. She is eating well today. She is still trying with all her might to lean and tilt her head and body sideways. She is so stubborn. On top of it all the seizures are still increasing in duration and strength. If only her body could have a break for a small period of time. I am hoping that the trip to Indy goes well Tuesday. She is going to be getting x-rays to determine what her degree of curvature is now. I am sure that the pulmanologist that we are going to see on the 17th will not be happy with her lung function and her curve. I am just holding my breath and taking it as it comes. The back brace does help her positioning but she only tolerates it in small sessions!!! Everyone else is doing well. Naomi is on antibiotics now. She still hadn’t cleared her cough that she has had for 3 weeks so the pediatrician prescribed her medication. It seems to be helping a little but she still has a hard time when lying down flat.

Thanks to all. Always for Her. Bobbi


November 7, 2008

Bailynn has done something today that she hasn’t done in months. She has been giggling and “talking” to me. She makes lovely mmmumm noises and nanananan and so on. She in the past would really just carry on and on and today she is just a jabbering. It is so refreshing to hear her voice and know that she is doing so much better. Her smile is bright and her eyes attentive, something that we have not seen but glimpses of over the last few months. It is such a joy to see her, to really see her. Today is shower day and hopefully her good attitude will transpire to that. I am looking forward to being able to really get her wet again once the PICC Line is out. I believe a lot of the trouble to date is the fact that she can’t be completely under the water and is getting cold!

Bob doesn’t have to work tomorrow and we are hopefully going to get out of the house briefly and visit with some great friends that we haven’t got to see much since this whole ordeal. (We are also going to Hobby Lobby tonight!!! I am so looking forward to just walking around and dreaming up all the things I could make!) May the weekend go well for all and I will try to update as much as possible. Now that Bailynn is doing better I know my updates have become sporadic. This is a good thing I believe. The large concerns are still her curvature and her seizures. There is little Bob or I can do about either right now. So I have resolved to semi except them for now and hope we can find solutions to all later.

With Love. Always For Her.

Bobbi


November 10, 2008

Well the weekend went pretty smoothly. Bailynn was happy but crooked not wearing her back brace and grumpy and straight wearing it. Ah, the joy of bracing a child. We even made it to church for the first time in months on Sunday and funny enough we haven’t been there in so long that they have changed the service time and we had no idea. We showed up about 2 hours to early, so we went to Wal-mart and did some grocery shopping to kill time. Bailynn did get upset in church, but mainly due to the fact that she was wearing the dreaded back brace!! Then on Sunday afternoon a group from another church came to help with our lawn work that has been neglected for about a year. A lovely group of women, teens, and pre-teens came and spent there afternoon raking, weeding, and trimming with Bob, in an effort to recover some of the hidden beauty of our lawn and landscaping. There work was so appreciated and needed. I can actually see my walkway lights again. Who knew!! The project was called “Give Big” and St. James West Church was one of the churchs affiliated. What a blessing.

Today is Blood work day again. Monday came so quickly, of course this whole year seems to have flitted into oblivion. Does it not feel like we just did Christmas? Tomorrow we are off to Indy again. Hopefully to get the PICC Line out!!! We are seeing her surgeon and the I.D. doctor (infectious disease). Bailynn also has an appointment with her Urologist on Friday here in town at St. Mary’s. Then we roll our wheels again on Sunday and head back to Indy. My mom is going with us. Bailynn just has appointments on Monday with Neurology, Pulmanology, and Dermatology. Then we head back home and later that week we see her Nephrologist (kidney doctor) out at Deaconess Riley. Two weeks of non-stop Doctor trips. The twins also have their 9 month check up this week.

Well, I will update with blood results later and hopefully we will have good news tomorrow.

Always For Her. Bobbi

P.S. Big Thanks to Martha Davenport of Adairville, Ky. for the Box-Tops. Isobel was so excited to get them and overjoyed knowing that they were from Grandma’s Friend!! Thanks so much.


November 10, 2008

So, blood work is not so good. Well infection numbers are not all good. We don’t know if the PICC gets to come out now or not but we will have to wait and see tomorrow.

Here are the levels. Hemaglobin 11.1 (good). CRP 5.4 (below 1 is normal so this level is high again). CED 25 (good).

Please pray. I am afraid the infection was not just in the rods. For Her.
Bobbi


November 12, 2008

Today is the one year anniversary of Bailynn’s original spinal surgery with rod placement for scoliosis correction.

PICC Line is out!!!!

We got home late last night and quickly bathed everyone and put them to bed. It was a long but good day. First

we went to the Children’s Museum in Indy for about 2 hours and then headed off to see Bailynn’s Surgeon. It is definite.She will be getting new rods in the spring. Her curve forward is already at 90 degrees and she is curving to the side again but not quite as bad as before, but bad none the less. So surgery is going to happen and it truly is the only way to give Bailynn any quality of life when it comes to sitting and interacting with us. She is miserable all hunched over and miserable braced. So the only other option is surgery and rods again. The one saving grace in all of this is the Doctors new knowledge of Bailynn. It is sad that we as people have to truly be our own test subjects to advance medicine and further ourselves. I can only hope that Gods true purpose in all of this was education. I look forward to seeing Bailynn straight again and for now we wait.

Then after the surgeon we were off to seee the I.D. Doctor and out came the PICC Line. After three months of IV antibiotics today we start oral. Here is the prayer request for that. There is no equivalent for the antibiotic she was taking through IV orally so now we are going to be trying a new antibiotic and hoping that she doesn’t have any adverse affects like in the past. She has to remain on antibiotics until the next surgery and after it. Her I.D. Doctor told us that if we can’t find an oral medication to take we will have to get a new PICC and resume IV treatment. Though I would not be happy with this decision I know it is for Bailynn’s benefit and I am praying it doesn’t come to that.

Our Family is SICK, especially the twins, Bailynn, and Bob. We all have a little gook but those four seem to be handling it the worst. Bob and I are going to be getting our Flu shots today and the girls tomorrow to try and ward off the dreaded influenza. The twins also have their nine month check ups tomorrow. How fun!! I will let everyone know how big they are. They have come a long way from 4lbs 13oz and 4lbs 15oz.

I do go back to Indy with my mom Sunday evening and then our next Scheduled trip after that is not till the first of the year. PRAISE GOD. May gas still only be $1.87 then also!!!

I know there is a plan in all this. I know everything is going to be okay. Now we have to start worrying about Bob’s travel again, our ability to financially support Bailynn obsessive need for the Hospital and Bailynn’s health to get her into surgery as the best Bailynn she can be.

For all of you I share the biggest Thanks!! Your support through it all has been unwavering and glorious.

For Her. Bobbi

P.S. Thank you to the Chandler Bible Group for the gift with deepest gratitude and appreciation. Our family sees God’s work through the love of others.


November 14, 2008

Well, Bailynn has had 5 doses of the oral antibiotic and so far so good. Bob and I are watching her and waiting to see how she is going to handle this medication. Remember the first allergic reaction to an antibiotic took almost 2.5 weeks to surface. She still has a cold and got her flu shot yesterday. She is running a mild 100 degree fever today and I chalk it up to all that has been going on over the last couple days.

Bailynn still has appointments in Indy on Monday and hopefully it won’t be terribly cold.

We will formally schedule the next surgery right after the first of the year. We want to have the surgery some time in March or early April, but I am going to say it will be in March. This surgery will be a little different. Her surgeon is going to use a smaller gage rod and different connectors (screws instead of hooks) he will also be mounting the bottom of the rods down lower instead of in her pelvic bone. With all these changes I believe she will have a better chance at keeping rods long term and doing quite well. With the added pretreatment and post treatment of antibiotics she will be safeguarded from further infection. I am ready, but not, all in the same breath. Today she is a little under the weather, but finding time to blow raspberries.

I have to say I never feel sorry for our family. I never feel that Bailynn is some large catastrophe that happened to us. She is glorious and hysterical. I do often worry for her. I want so much for her to have the best and be the best. I want so badly to protect her with all my might and I know that I can’t do it all. It is good that her Daddy is right there with me. We are like large vultures (not the eating kind) circling and shielding her. Please don’t ever feel sorry for us. Our family is perfect and God has given us such a gift. We have five wonderful little ladies to share this world with and the next.

If you get time and feel like reading I have a place for you to go. I explored a little bit of the caringbridge website and found one that is worth the read. (www.caringbridge.org/visit/caleb) When ever I see Bailynn, and especially over the last few months, I can’t imagine life without her. I hold my breath when I think about her leaving us. I know she would go to a place of health and ultimate love but I still believe she has work to do here. Her sisters are learning everyday a lesson from her. I am learning everyday a lesson from her. Her strength and perseverance is untouchable. She has so much more to teach. Caleb didn’t. His time was cut short. Please if you have time pay tribute to this young man that his parents have lost him. I don’t know him. I just stumble upon his page and now I will forever be touched by him. I hope others stumble upon Bailynn and get some kind of life insight from her.

With Love. Always For Her.

Bobbi

Live Simply.
Love Generously. Care Deeply.
Speak Kindly.
Leave the Rest to God. Happiness keeps You Sweet, Trials keep You Strong, Sorrows keep You Human, Failures keep You Humble, Success keeps You Glowing,


November 15, 2008

But God keeps You Going!

Mondays trip to Indy has been canceled. My grandfather is not doing well and is in the hospital. He has fluid on his brain and is very confused about who he is, where he is, and who everyone else is. The Doctors can not perform the much needed relief surgery until the blood thinner medication he has been taking has completely left his system. He suffered a few strokes this summer and has had ongoing trouble and confusion. Hopefully the Doctors can swiftly help him. I felt that it was best that my mother was there for her mother right now so I have cancelled Bailynn’s appointments and hope to get them rescheduled soon. Please pray for my grandparents (their names are Jim and Sue) and please also pray that I can get all of Bailynn’s appointments rescheduled for the same day again and that there is an opening in the not so far away future.

Life takes its turn and we just have to lean in with them. For Her.
Bobbi


November 18, 2008

Wow, what a last couple of days. I spent my Sunday evening sick and my Monday throwing up, shaking, and dizzy. I feel better today but food is not really on my list of things to do just yet. Unfortunately now Bailynn has it. I am sure it will make its full round before the week is out but of course her and I are the first to get such a fun sickness!! Today she was suppose to go and see her Nephrologist but I called and rescheduled. I figure they didn’t want our disease coming to them. So now she will see her Nephrologist in January and I got most of her Monday appointments at Riley rescheduled for December 8th (it was divine intervention that my mother couldn’t go with me Monday, because I never would have survived.)

 My big concerns about Bailynn having this is that she has no meat to spare. She is already skin and bones and doesn’t like to eat with a gusto to begin with. I know how I felt yesterday and I don’t know how I am even going to get her medication in her much less some calories. Please pray for her speedy recovery.

My grandfather is doing much better. They drilled a hole in his head and put in a shunt to relieve pressure from retained fluid on Sunday (3 days before they thought they would be able to). He is suppose to go home on Wednesday and I am glad my mother was able to spend yesterday with her mom and dad.

That is our start to the week in a nut shell. I am hoping the remainder of the week only gets better. The cold is not helping, Isobel needs a new coat and I wish we lived in Hawaii right now =)!!! Who else wants to move with us!! It isn’t even the worst of the winter yet. I just wish it could be spring and fall all year round.

For Her Bobbi


November 19, 2008

Bailynn’s eyes are so dark underneath them. She looks puny. I don’t know if she is still feeling sick, because she is eating today, or if she is now feeling the effect of the new oral medication. I am hoping that it is left over from the illness. Just like I thought, Arwyn is now throwing up, around it goes. She is doing better this morning, but is on the same page I was with food, major icky!!

Isobel went off to school this morning and I am hoping that she doesn’t get the bug. I asked her a ton of times if she felt bad and she insists that she doesn’t. Fingers crossed that she remains that way.

Have you ever read the description of distressed jeans? Abrasions, destruction, and detailing are words that are commonly used when describing these new fashion statements. I love Bob’s Mom-mom who wonders why someone would spend so much money on jeans that look like you got them from the good-will. I agree to an extent but now I wonder what the draw is. The jeans are torn, abused, often thin, and look like they are ready to fall apart. I got to thinking about it and I believe a pair of distressed jeans represent in some odd way how I feel about my heart. It is worn, tired, probably has a few holes in it. There are parts that are thin and parts that are strong. There are probably some heartstrings dangling and just like the jeans you fear cutting them off because they are only going to get long again and they are a part of the jean. The dangling heartstrings are still apart of me. There is great detail and my heart is loved and loving. So maybe the jeans represent our need to show we are worn. I still don’t want holes to let the draft in, but I can see the representation of destruction and the draw. I think if my heart looked like some of the jeans I would be buying some really pretty patches!! I have a beautiful family to fill in and help wear out my heart =).

Bailynn is continuing to get better but still has a way to go. I will rejoice the day that she looks strong again. Her health will improve. I just fear that she will be strong and knocked down again. Hopefully this next surgery will be the last for a while (at least until she needs her battery changed in her Vagus Nerve Stimulator, ah the little things).

Thanks to all.

Always For Her.

Bobbi


November 19, 2008

Bailynn is throwing up again. I don’t know if she is sick or if it is the medication. She is running a mild fever of 100.8 right now. I am going to wait till tomorrow to call anyone. I don’t want to seem crazy!! Her tummy also looks a little swollen.

For Her. Bobbi


November 20, 2008

Bailynn is still throwing up. She didn’t even get her medication last night because we couldn’t get it in her. This morning she had enough boost to wash down her pills and I am hoping that she keeps it down. If she does I will try to feed her again later this morning. I am really worried. Despite it all she doesn’t act really miserable or anything.

For Her Bobbi


November 20, 2008

Bailynn has kept down her morning meds and about 7oz of boost so far. I am trying not to push her too hard because she does gag while drinking. Solid foods were a bust. She just kept pushing them away. I will try again this evening. If she still won’t eat tonight I am going to call her I.D. Doctor in Indy. I just hope it doesn’t come to musical medications. I was really hoping this medication would work out. She just loves to be challenging.

For Her Bobbi


November 20, 2008

Bailynn is continuing to throw up. Bob is paging the I.D. Doctor right now. Hopefully we will get quick answers. One of the side effects of the new antibiotic is vomiting and nausea (most medications have this side effect). Maybe it is simply the antibiotic.

For Her. Bobbi


November 21, 2008

Bailynn’s Doctor seems to think it can be a number of reasons why she is throwing up. One being the loss of the IV antibiotic (but this would have been accompanied by a high fever), the other being a high level of antibiotic in her system (so she is getting no antibiotic today, but really she hasn’t had it all week because she keeps throwing it up!!).

Her lips have lost their pink tone and she is not urinating as frequently as she should be all red flags to major problems. Bob and I are taking her to get blood work this afternoon and hopefully those results will enlighten us as to what is truly going on. Today she was suppose to resume therapy for the first time since June, but that has now been canceled. She is very whinny and not tolerant of a lot. It is so painful to watch her suffer over such simple things as trying to find the right medication to treat her.

Thanks to all who have been continually Praying for her health and happiness. I really appreciate all of the ongoing support and love for my Angel on earth. Who knew Angels wore Polk-a-dot socks!!

With Love. Always For Her.

Bobbi


November 22, 2008

Bailynn’s blood work came back AWESOME!!! yesterday. Okay, so it has to be the medication. We are waiting to hear from her I.D. Doctor as to what he wants to do. She hasn’t had the medication since Thursday morning and hasn’t thrown up since Thursday evening?!?!?! Here we go again. Trying to find a medication that will work for little Miss Bailynn.

For Her

Bobbi


November 24, 2008

Baillynn’s blood work was so good on Friday (and the antibiotic is making her sicker instead of healthier) that the Doctor wants her to stay off her antibiotic until she has labs drawn again on Friday. Bob and I’s only concern is the fact that her surgeon wants her to remain on antibiotics until the next surgery in March. We don’t know what the I.D. Doctors plan is right now but we definitely want to pretreat for infection before the Spring surgery. I am beginning to wonder what the true pros and cons are of medicating even with all the trouble. I know she needs the medication. We will see Friday what her blood work says.

For now the last few days have been pretty uneventful. She is eating a smidge better. She stopped throwing up and has been playing well. I am hoping the new gusto holds through the Holidays.

Thanks to all who went on and ordered bows for my on-line Bow Party through Faithworksboutique.com. I really appreciate it.

With Love to All. I hope your Thanksgiving is delicious. And Always For Her. Bobbi


November 25, 2008

I finally added some new photos.

Today Arwyn has her hearing test. Hopefully it will go well and they will figure out the pressure behind her ears.

Okay, I have been teaching the girls about our former Presidents. Not a lot but right now we are working on recognizing them and their names. Isobel and Arwyn know that George Washington was our first “boy”, that Harry Truman wore glasses that looked like Harry Potter, that Abraham Lincoln was so very tall, that JFK has the nicest smile (Isobel wants to meet him she thinks he’s cute =)!! ), that there are two George Bushes (one’s the daddy), that the Teddy Bear was named after Teddy Roosevelt, that Woodrow Wilson’s mommy needed to spank his booty (because he didn’t want to let women vote), and that most of them are in Heaven. Okay, this leads me to my story. A couple of weeks back during the ongoing election coverage (that seemed to never end) the Today Show went to old Williamsburg, Virginia. There were all these re-enactors (hee hee) and one man was dressed as George Washington. Isobel watched and looked at me. She knows I think very highly of George Washington and I have read a couple of books about him. She looked at me and said “Is that George Washington?” I responded with a “Yes, kind of.” “But he is in Heaven, right mommy?” “Yes” With joy abounding Isobel shrieked “Our TVS can see Heaven!!!” So, in a world of computers, Ipods, Television, so much fantasy overload and so little reality, were we can watch war as it is going on and speak to people on the other side of the world my six year old thinks, of course there is Heaven, right there. I tried to explain that the man was only pretending to be George Washington, kind of like Halloween. Isobel semi understood and though she was told that the TV held no magical window to Heaven it made me think. How glorious that would be. To bad we can’t web-cam our loved ones that have gone or get the occasional email. I assured Isobel that George Washington was in the “real” Heaven and one day she will be able to meet him with mommy. She nodded her head and went about getting ready for school. Now she asks if people on TV are just playing Halloween. Even when it is the news I answer “Yes!”

Hope that Isobel made you smile this morning.

Love to all. Always For Her.

Bobbi

(One of my favorite George Washington Quotes!!)

Government is not reason; it is not eloquent; it is force. Like fire, it is a dangerous servant and a fearful master.

George Washington


November 26, 2008

Awryn’s hearing test went perfect. Everything checked out fine so we are back to square one with trying to find out why she falls so much. All the girls did great getting out of the house, even Bailynn. Who knew the Rehab Center could be a great getaway!?

Bailynn ate a little better yesterday. Eating good for both lunch and dinner (a rarity). She hasn’t ran a fever and is keeping all of her food down still. I think she looks like she feels better. Today we are going to Isobel’s School for her “Fall Party” (you know, because we can’t just call it Thanksgiving!!). Arwyn is so excited!! We are in charge of the prizes and the girls have been drooling over them since Saturday.

Naomi broke two teeth (yah she was grumpy!!) on Monday and Lila is basically “crawling,” It does look more like scooting right now, but hey she is trying. Naomi just watches with little interest of going anywhere other than were she is put.

I would like to Thank the Ladies from Bristol for the lovely gift basket full of goodies. The girls had a great time exploring all of the stuff and helping mommy put it away. We really appreciate it so much. What a blessing and a generous gesture. I hope all of your blessing return to you twice fold.

For Her

Bobbi

(My George Washington Quote of the Day. If only current politicians had the qualities of our first!)

I hope I shall always possess firmness and virtue enough to maintain what I consider the most enviable of all titles, the character of an Honest Man. -George Washington


December 1, 2008

We had a wonderful Thanksgiving. Bailynn’s blood work on Friday came back fantastic!!! I am now waiting (again) to hear from the I.D. Doctor in Indy about his views on the results. Bailynn had a great happy weekend and ate well, slept well, and was quite social with all of us. Besides Bob having to work Friday, Saturday, and Sunday it was a great weekend!

Isobel is on her first Field Trip today and got to ride the School Bus to it. She was so excited this morning when I dropped her off at school.

Arwyn I can tell is enjoying her day with Isobel’s toys and no Isobel telling her what she can and can’t play with.

The twins are even having a good day playing and eating cheerios by the box full!! Now, if only our Holiday Season can continue on this well.

I will keep everyone up to date on our latest news, but for now all is well.
For Her

Bobbi


December 4, 2008

Well, after speaking to Bailynn’s I.D. Doctor’s Nurse, the conclusion is to keep Bailynn off the antibiotics for the time being. Her numbers are better than they have ever been on the medication, which leads me to believe the medications were making her body fight in a different way against them. She looks great and is doing great. She will continue to get blood work every two weeks and will most likely restart the antibiotics just prior to surgery.

This past weekend my family came in from Tennessee and the girls were so happy to see their Uncles, soon to be Aunts (my brother Benjamin has gotten engaged also now), Grandma, and Grandpa. It was so nice to get to kick back and hang out with all of them. I always stress out before they come wanting everything to be perfect. Stress out while they are here wanting them to have top notch fun. Stress out when they leave missing them and hoping they will want to return, but I swear it is fun!! I just hate my family living in Tennessee so much. I know it is not that far away, but since they use to live just next door, it is like another planet!! I think I just know I am going to miss them so much again when they leave that it takes me days to recover from seeing them and knowing it will be a bit before I see them again.

I take Bailynn to Indy again on Monday with my mom. These are her make up appointments with the Pulmanologist and Dermatologist that she was suppose to see on Nov. 17th. My grandfather went back to the hospital yesterday with an infection and they tried to give him a PICC Line, but it didn’t take and they are going to try again today. I am not really sure if our family has got the memo, but we should not all need PICC Lines =) (Bob hates the little smiley faces so it makes me smile everytime I use them =) =) =) your welcome!! )My grandfather is apparently doing much better despite it all and hopefully this round of treatment will help him further.

Bailynn’s latest drama is grinding her teeth. I am not saying she just rubs her teeth slightly together. She squeaks her teeth to the point that I have shivers going down my spine. Her back teeth are basically smooth and I fear that she will start exposing nerves. Then she will need major dental work $$$$. For most of us we could just go get a shield to wear and protect our teeth, but she is epileptic and would not tolerate such a device in her mouth let alone leave it there. I am so upset by this. The theory as to why most special needs children (especially those on puree diet) do this is, is because they don’t get that crunchy chewing input we get while eating. Therefor she is creating the input by destroying her teeth!! YEAH. Oh, Bailynn, if it is not one thing it is another.

Bailynn also goes back to therapy tommorrow. Please pray she survives. She is still quite unhappy with any movement. I do think she will be pleased to get back in the Rehab Center’s heated pool tommorrow, but unfortunatly it is terrably cold outside now and wet hair is no good!!!

Thanks to all who come back for more updates. You really keep our family going. Thanks also to Rev. Kev for his incredibly selfless gift!!

With Love and Always for Her. Bobbi


December 6, 2008

Um, Brrrrrrrrrr. We woke up this morning to snow flakes falling and the girls were so excited. They wanted to go outside and play!! After much persuasion I convinced them that is was too cold and that there was not enough of the white stuff on the ground. They would just be muddy and yucky. Isobel wants to build a snowman!! Well, she will have to wait.

Bob is at work again. Another Saturday with me entertaining the troops and watching animated feature films. Yeah! What I would give most days to see a real human on the television screen. I have also spent a good portion of my bits and pieces of free time, wrapping presents this morning. We have really scaled back this year, but the reason for the season is not gifts. I am so glad we have made it here with a “healthy” happy Bailynn. She did great at therapy yesterday. She did spit up a little bit on her OT, Amy. I felt so bad but Bailynn honestly didn’t scream or react half as bad as I thought she would. She really enjoyed the pool, but her PT, Tammy, agrees that her forward curve is much worse than it was prior to her rods being placed in her back a year ago. This is the reason that surgery is eminent. Bailynn is my hero. I couldn’t do half the stuff she does with a quarter of the gusto. She is amazing. It was also great to get back to the Rehab/> Center/>/>. It may seem silly, but it is a lovely little outing. Even the twins were stunned by the action and excitement. Bailynn hadn’t had therapy since June.

Yesterday Bob got up for work around 2 am/> and got out of work in time to go and get Isobel from School. She was an excited little girl. Then we took the girls to go and see “Bolt” we hadn’t been to the Theater in months (the girls call it the popcorn movie theater). I think the last film we went to see was “Prince Caspian” or maybe “Kung Fu Panda.” I can’t remember I just know the twins were really new, and yes we take all the children. Bob and I have always felt that if you teach them from an early age how to act in certain situations they will learn. Our children have never had to be removed from a restaurant, sit well in church, and get complements for their behavior at the movie theater. When Bailynn was very little we took her to see “Lord of the Rings” and “Star Wars” she was always attentive and obedient. The other children have followed suit, it truly is a blessing. I can’t imagine taking a child at an older age to the theater for the first time and expecting them to know how to act. Start young that is my motto. Anyway, I digress. The movie was marvelous. No lie. We all loved it, but of course we are dog people. John Travolta was a great “Bolt” and the little hamster named Rhino was hysterical. I can’t wait for it to come out on DVD. Naomi slept through it, but Lila was bright eyed and bushy tailed. She like watching the other people in the movie theater more than watching the movie (oh, and she loved my straw!!). Bailynn squealed when we pulled into the parking lot. She loves the movies!!!

Monday is yet another road trip. Hopefully all will go well and we will get home early. I am going to try to make it home in time to take Bailynn to the dentist on Monday (because of her need to destroy her teeth). I will try and hop on the computer Monday night and update.

Thanks to our Wal-mart Craft Ladies for the lovely card. Isobel and Arwyn were so upset that I saw you guys and they didn’t. Hopefully we will be able to visit soon.

Love to All. May your Christmas Decorating be going smoothly =). As always For Her.

Bobbi


December 9, 2008

Yesterday was quite the day. I got up at 3:50 am to start getting everyone ready to hit the road and we were in “Rocket” by 5:05 am. The beginning of the trip went very smooth. We stopped for gas and grabbed some breakfast on the road. We only had to take one potty break and got to Hwy 70 in plenty of time to get to Riley by 10 am their time (Bailynn’s appointment was for 10:15am). Here is where things went bad. Not even half way to Indy we came upon ice and snow conditions, road flares lining the sides of the roads, slow traffic, and three bad slide offs involving a semi, pick-up-truck pulling a trailer, and a Cadillac. Two deep in ditches, but everyone looked to be fine. Traffic was at a turtle pace and with just a small window of margin for error with the appointment time, things started looking bad. Well, bad went to worse. We came to a complete stop on hwy 70 about 2 miles from the previous slide offs. We sat there for 30-45 minutes, and then resumed our 25 mph pace up hwy 70. By this time there were request for potty, drinks, and bottles. We finally made it to Greencastle to the BP to refuel us and relieve the troops, but the hwy behind us was at a complete stop by then. It was 10:05 am and our arrival and safety seemed to diminish with every passing moment. I called my dad who informed us that there were two more accidents ahead and no prospects of getting to Indy with in an hour. My dad’s advice was to turn “Rocket” south and head home. My mother and I being in the car for hours with my five prefect children were not totally ready to give up until I called pulmanology. They told me that clinic closed at 11 and if we couldn’t make it by then they couldn’t see us. So, “Rocket” pointed south. We couldn’t have even got back on the hwy if we wanted going north. It was still at a stand still. After seven hours in the car we arrived back home. The twins looked about, I am sure they were thinking “were on earth did we go?” Um, nowhere!!! Awesome right. We never made it to Indy and we were so close. Her appointment is rescheduled for February 2nd and for now we are staying away from the winter weather. We did however make it to the dentist here at home and there really is nothing that can be done about Bailynn grinding her teeth, another YEAH!! At least we went to Turonies with my mom and the girls got to hang out with Grandma all day. Too bad most of it was in the “Rocket” on the road. Yesterday will go down in the record books. After 8.5 years and countless trips to Indy, it was the first time we couldn’t get there. Unbelievable!!!

Thanks for all the prayers for our safety. Somehow we did great despite the conditions.

Always For Her (despite all the drama!)

Bobbi


December 11, 2008

 

This weekend marks two weeks since Bailynn had blood work last, that means she is getting a poky this weekend. On top of that, Friday we are going to Huntingburg, IN. to a Christmas Party. Bailynn was invited by the company that sponsored her “Make a Wish.” This March will be two years (and two children) since we went on her “Make a Wish” and it just doesn’t seem like it was that long ago. Isobel and Arwyn still talk about it all the time!! They can’t wait till we can go back to Disney World again!! Mommy and Daddy either.

Bailynn is still doing very well. She has been spending almost all of her day in the Family Room with us again (were as before she didn’t even want to leave her bed). She is slowly getting stronger, though she still is not strong enough to sit well without her back brace. Three more months until we get the rods back. It can’t come fast or slow enough.

The biggest Thanks ever to the people at EVAPAR. I just feel so blessed that our family has such wonderful friends and support. No lie, I don’t know were we would be without people like you!!

Also, Happy Birthday to Mamaw!!! Hope your day is full of fun!! Two weeks till Christmas!!!
For Her.
Bobbi


December 16, 2008

Despite the cold and Naomi needing to cough all the time, things are going quite well. We went out to Huntingburg, IN. Friday night and were honored to be one of five families that were sponsored by OFS Brands for our Make-A-Wish in 2007 at the party. It was a lot of fun and the girls got to see Santa and Mrs. Claus. They are really pumped for Christmas. Then on Saturday we adventured out for some much needed fun outside of our house. We got diapers and went to Gordmans to walk around. I ran into Jo-Anne Fabric and drooled over lots of fun sewing things!! Then we went to the mall that was completely packed, but we had to. Macy’s has a mail-box for Santa letters and for every one they receive they will donate $1.00 to the Make-a-Wish Foundation. We wrote seven!! The mall proved to be more effort than it was worth, that is why I am such a big believer in Internet Shopping (point, click, and pay!!). It is much more time consuming to go dig through racks when you can just search by item and size on-line.

Bailynn is still doing really well. We are going to get Bailynn’s blood work done tomorrow. Bob took the day off to do some errands and to have lunch with Isobel at School. Isobel is so excited. We don’t have any Doctor’s appointments again till after the first of the year. Hopefully the weather will cooperate when we do try to head north again.

For Her. Happiest of Holidays. Bobbi

‘God doesn’t promise to protect us from problems on His earth. Instead He promises to give us the courage to face our problems with His strength..’

‘Life isn’t about waiting for the storm to pass… It’s aboutlearning to dance in the rain..’

December 18, 2008

Happy 31st (by: Isobel) Birthday to Grandpa. Isobel had so much fun having lunch with Grandma and Grandpa at her School for Grandpa’s Birthday.

Bob and I had lunch with Isobel yesterday at School. She beamed and acted like we had never ate with her before.

Bailynn had her blood work yesterday and it still came back perfect. Her infection numbers are those of a “normal” non-infected person. She is doing so great. Really Really Great.

My bro Jacob and his finance Leahanna are in enjoying time with our rambunctious family. They are on Christmas/Winter break from College. My mom and dad came by today for my dad’s Birthday and it was great to get to see them. Christmas is upon us and family is gathering, my favorite part of Christmas. My other favorite part is every year we bake Jesus a Birthday Cake and I am really looking forward, now that the girls are a bit bigger, to the decorating with them. We will be getting plenty of sprinkles!!!

Tomorrow is Isobel’s last day of School till after the new year and what is funny is that tomorrow is “Polar Express” day at school and Isobel gets to wear her “pjs” (okay, I am crazy and I am telling you that she is not going to school in real pjs, she will be going in squishy clothes a.k.a. sweats!! I know I am nuts, forgive me!!)

I hope everyone’s holiday preparations are going well. May the weather behave!! With Love and Best Wishes. For Her.
Bobbi


December 25, 2008

Merry Christmas.

Our family is enjoying the comforts of our home and a well shared cold between the twins. Naomi continues to cough and now has some greenish snot (fun right!!!). Bailynn is still having the random violent seizures, but doing well health wise. She has been very grumpy the last couple of days and wishes not to be moved much. We have tried to oblige. Our family baked a Happy Birthday Cake for Jesus today and sat and watched “The Nativity Story” movie together. It was a great way to celebrate Christmas. I am so proud of my girls, though we all (human nature) want gifts my little ladies have full understanding that they have been showered with new items because on a night long ago our Lord was born in a manger. Isobel and Arwyn wanted to share the cake with Jesus and also wanted to know if he thought it was okay that we ate it =).

They also had their first Santa experience with a jolly “HO HO” and sleigh bells from outside their window. I vaguely remember the enthusiasm and spirit of youth with Christmas, but I saw it this morning in my children’s eyes. I am so blessed. I didn’t need packages or bows my greatest treasures can not be wrapped (shouldn’t be at least!!). What a gift to have 5 beautiful children and a wonderful husband to enjoy life with. Today makes my heart leap with joy and that is the magic of the day not the magic of a present.

God Bless All and I hope Your Christmas was Merry. Always for Her. Bobbi


December 31, 2008

Well, Almost Happy New Year.

I will be sad and glad to see this year come to a close. 2008 holds so many precious and terrible memories. We started off the year pretty smoothly with the addition of puppies and the birth of our Twins, Lila & Naomi, we edged in kind of slow and then as the spring unfolded so did all the agony and distress with Bailynn’s ongoing pain and discomfort and then the realization that her rods had come off. Then summer only brought more trouble and multiple surgeries, spinal breakage, and infection. Each day of summer seemed to dredge on and on. The summer heat miserable and my child fighting with all her might and somehow we made it through. The twins are now getting about, Bailynn doing well, our first child is attending public schooling. We have five kids and it just doesn’t seem as daunting as others want to make it out to be. I am looking forward to 2009 and slowly finding our way out of debt (oops, surgery again in March so maybe not =)!! ). I look forward to Bob now having vacation days again (to spend in the hospital of course). I am looking forward to watching my girls grow more everyday. I am just glad that in a matter of hours 2008 will be but a memory and life will push on. Here is to Bailynn having a better year, the twins walking in the next few months, and to our country finding its strengths again (may it be so). To all of our loved ones and new found friends out there I hope your 2008 memories are grand and that you future for 2009 holds great possibilities. Happy New Year.

With Deepest Respect for all who come to see how we are doing and as Always For Her.

Bobbi


January 6, 2009

Well 2009 has came in like a Lion. Does that mean it will go out like a Lamb?

Bob returned to work yesterday after a much needed break (shutdown at Toyota). The girls and I really enjoyed our time with Daddy. Isobel went back to school also yesterday and was so excited to go and see her friends again.

Bailynn is still doing well and looking better every day. She is still unable to sit by herself and with our frustration set aside we have resolved to keeping a cot in the Family Room for her and hoping that the surgery date will come and go with out trouble and our Bailynn will find her strength to sit again. I have no doubt that by summer we will see our Bailynn erect once more. What a blessing that will be.

For now we were blind sided by a bill from Isobel’s Speech Therapy. Isobel was diagnosed 3 years ago with a Language Processing Disorder. At 4 years of age she could answer few questions and could not tell you her name or age. She spoke out of sequence and had lots of trouble relaying her thoughts. After lots of Therapy and working with her she has come so far. There is still frustration with her communication and obstacles that we have learned to deal with and are trying to teach her to overcome but her ongoing Therapy is a must. Well since Isobel’s Speech Delay is not that of a lisping or physical nature our Insurance (which is co-owned by the Devil himself) denies her benefits. Claiming her Speech Delay is Educational. AHHHHHH!!!! We have appealed and appealed to no avail. So over the weekend a hefty $1000.- bill came in the mail. Granted it is for 2007 and 2008 and after a 50% rebate because of our family size, but this is not what we needed right now. We are staring Surgery in the face and the bills for Bailynn’s Infusion through Deaconess Home Health are just going through our Insurance. Hopefully all will work itself out but for now I resolve to PANIC!!! No, I know things will be fine; it is just terribly scary to see so many digits on a bill for something you know should be covered. I just wish what ever board made the decision to deny my child could sit and talk with her for an hour and then make their decision. I just can’t believe people are so narrow minded (even with a Psychologist’s Diagnosis).

Please Pray our Family survives the beginning of the year =). I am sure the spring will bring new light and with it some peace. In a month the Twins turn one, in two Bailynn has surgery, and in three it will all be but a memory!

Happy New Year to All. As Always For Her. (May her voice be heard)

Bobbi

P.S. We are still trying to collect Box-Tops for all of you out there that have been helping. Isobel was so happy to receive some over the break and is looking forward to more. Thanks Again!!


January 8, 2009

The last couple of days Bailynn has been having such severe seizures that she has been throwing up during them. Nothing has changed and we are truly unsure of why she is doing this now. We will be seeing her Neurologist on Feb. 2nd and hopefully it will have resolved by then, but if not we will have to address the issue. The only good thing is her seizures don’t last terribly long and she doesn’t throw up an absurd amount. The future for her seizures has always been so uncertain. Only time will tell how her growth and development will affect her seizure activity. We know that puberty will be a trying time with chemical changes and such, for now I try to think of the present and not focus to far in the future.

Okay tangent of the day (“Basically a rant by: Bobbi Hammonds”)

I know that people see Bailynn and other children like her as “different”. I know that Bailynn scares them and it is hard to see her in this world and understand that she is just as important as their “normal” child. I know that some people fear their children having a “diagnosis” or “delay”. It saddens me to think that people are so high and mighty that even with help in reach and the stigmatism of having a child with special needs diminishing everyday, that they can’t seek help, out of pride. That they can’t see what good comes from all of this. Bailynn couldn’t be who she is without all the wonderful Doctors, ladies in Therapy, and other related fields helping her and bettering her. I can’t express how much I want my children to succeed. If there is any tool or resource out there that will help better them I will take it. I don’t care how crazy others may see me. I am not going to stand by and watch my children slip behind because of some moral dilemma. We send our children to School through out most of their childhood and yet some can’t see the simple benefits of other ways to further their children. Please understand I am an advocate for bettering the lives of all children young and old. If they need tutored in Chemistry, they should have a tutor. If they want to learn to play the piano, someone should teach them to read music. If the need medication to help them please give them the medication. Help is there for us all to better and further everyone. Labels are just that labels. They mean nothing unless you make them. Tuberous Sclerosis is what Bailynn has not who she is. Drop the pride and move on. Except and progress.

(Sorry about the rant.)

With Love. Always for Her.

Bobbi

God doesn’t give you the people you want, He gives you the people you NEED. To help you, to hurt you, to leave you, to love you and to make you into the person you were meant to be.


January 10, 2009

Before I was a Mom,
I never tripped over toys or forgot words to a lullaby. I didn’t worry whether or not my plants were poisonous. I never thought about immunizations.

Before I was a Mom, I had never been puked on. Pooped on. Chewed on. Peed on. I had complete control of my mind and my thoughts.I slept all night.

Before I was a Mom, I never held down a screaming child so doctors could do tests. Or give shots. I never looked into teary eyes and cried. I never got gloriously happy over a simple grin. I never sat up late hours at night watching a baby sleep.

Before I was a Mom, I never held a sleeping baby just because I didn’t want to put her down. I never felt my heart break into a million pieces when I couldn’t stop the hurt. I never knew that something so small could affect my life so much. I never knew that I could love someone so much. I never knew I would love being a Mom.

Before I was a Mom,
I didn’t know the feeling of having my heart outside my body.
I didn’t know how special it could feel to feed a hungry baby.
I didn’t know that bond between a mother and her child.
I didn’t know that something so small could make me feel so important and happy.

Before I was a Mom, I had never gotten up in the middle of the night every 10 minutes to make sure all was okay. I had never known the warmth, the joy, the love, the heartache, the wonderment or the satisfaction of being a Mom. I didn’t know I was capable of feeling so much, before I was a Mom.

For Her. The one that started it all. Bobbi


January 13, 2009

It has been a good weekend and a great start to the week. Bailynn’s seizures haven’t been very bad over the last couple of days and today she has been in a pretty good mood. I am hoping to get her surgery scheduled today and start preparing for it with a date in mind (only a couple more weeks really). Everyone else is doing well also. Not much change on the home front. We had company (my bro Jacob and his fiancée Leahanna) over the weekend and half of last week. The girls love it when they come in and my mom popped in Saturday night through Sunday for a bit of girl fun. My mom, Leahanna, and I went to a movie and the Bridal thing downtown on Sunday. It was a ton of fun but I couldn’t wait to get home to the girls. I literally was feeling sick from missing them so badly. I am just no good spending time away from them. It was fun to go see all the wedding stuff though and to get to taste test cakes and such. Over all we had a great time and Daddy did good taking care of his ladies at home with Jacob. Now it is back to normal and watching the calendar flip =). Hopefully all will continue smoothly and we will meet spring with open arms. Hope all is well for everyone out there. Big Love and Blessings.

For Her.

Bobbi


January 15, 2009

 Surgery is Scheduled!! Friday March 6, 2009 at 8:00am (Indy time). It is again at St. Vincent’s Children’s Hospital on the northern edge of Indy. We have to be at the Hospital at 6:30am. I will remind everyone again when the date gets closer. Here we go again. I am praying that the Medical Staff has learned from their past (multiple) mistakes.

Thanks. For Her. Bobbi


January 16, 2009

Well all the ducks are in a row and the big count down is on again. The hotel is booked, the dogs are taken care of, and surgery is scheduled. I can’t wait to see Bailynn sitting up and enjoying life once more. It will be a joy to remove the cot from our Family Room after her recovery from her surgery. 48 days to go.

For Her.
Bobbi
“Be who you are and say what you feel, because those that mind don’t matter and those that matter don’t

mind.”..Dr.Seuss


January 17, 2009

Happy 30th Birthday to Amanda. Hope you have a great day.

Bailynn is doing so well today. She is sitting up in a chair and let me fix her hair (she does have her back brace on). She has even mustered out a couple of smiles and Bob and I managed to get a few good photos of her sitting with Isobel. It is hard to believe how big they are getting. It almost seems impossible. Bailynn has reverted to some stronger seizures at night. I believe she has worse ones on days that she doesn’t get a good nap in. Of course, it could also be do to the extreme cold of our house =)!!! Please tell me we are not the only ones trying to save by turning the thermostat lower and lower.

Hope all is well with everyone out there and to everyone who has Monday off – Enjoy it. I know Isobel will. For Her.
Bobbi


January 19, 2009

What a beautiful snow covered day. I am so glad we got to spend it sitting at home!!

Our next travel dates to Indy are February 2 and 10 for appointments and pre-op stuff. I have received a few emails asking what people can do with surgery looming again. I feel that so many people have already done so much however if you still feel the need here are some ideas that would help greatly.

While we are in Indy some of the most expensive things to deal with is feeding a family of 7 at a Hospital. So Gift Cards to Fazoli’s, Panera, and McDonald’s would be marvelous (they are right by the Hospital). Also, Gift Cards to Wal-mart for simple groceries and things while we are there. Unfortunately, I don’t think Best Western has Gift Cards, but that would sure help =). I know things will go smoothly and everything will be fine, but if you still feel the need to contribute to our little Bailynn feel free. It is always such a blessing and honor to see so many called to love my little girl.

Other than that, another great day. The girls have been just hanging out at home with Mommy. We have been talking about presidents since the inaugural is tomorrow and the girls just eat it all up. They did a bit on George Washington and his descendents this morning on the Today Show and the girls both listened with great attention. It is so inspiring to watch children soak up knowledge. Then of course Isobel had to race some “Mario Kart” and she gets so upset when she doesn’t win (which is often). I just keep trying to encourage her to practice and she will improve. She doesn’t want me to race with her unless I will lose to her and she is often caught saying “oh, yeah, got yah!!!” Her Uncles are so proud!!

I hope everyones day is going well also. Thanks to all.

Big Love. Always for Her.

Bobbi

P.S. We have one last push for Box Tops. The contest ends at the end of March. Please, for all our loyal collectors out there, let me know and we will get them from you. Thanks.

“…I know that the Lord is always on the side of the right. But it is my constant anxiety and prayer that I and this nation should be on the Lord’s side.” Abraham Lincoln


January 21, 2009

On this new countdown to surgery here are some major concerns we have for Bailynn and some prayer request.

In this time of heightened cold season, we need to do our best to keep Bailynn healthy. Right now, I am very sick and fear giving it to her. Bob, Naomi, and Isobel have started coughing, but so far that is the only sign of passing on my illness to others. I have so much congestion and that is the last thing Bailynn needs to deal with. Also, when we go to Indy on February 10 we will be discussing the new diameter of the rods that are going to place in her back. In an attempt to prevent spinal damage like the last time, her doctor is going to put in a smaller gage rod system and no hooks that claw into her vertebrae. He is also not going to mount the rods into her pelvic bone like last time (because they started slipping out and poking through her skin). I am unsure of how all this is going to work with so many options out of the question this time. The doctor even talked about curving the rods forward a little bit to give Bailynn her comfort zone of hunching forward and I am unhappy with this thought. I know everyone is touchy at this point after so much error, but I can’t help to want to see her good and straight again. If that is not completely possible I want definitive reasons to that conclusion. Bailynn’s other concern with the doctors is again the possibility of infection due to the past contraction of it. Okay, so the thought now is since her body is doing well and showing absolutely no signs of infection (and seeing that she has such bad reaction to antibiotics) the plan is to not put her on any medication prior to surgery, but to send her home on an undetermined length of antibiotics to attempt to ward off any new occurrence. I can’t say that Bailynn has put back on all the weight she lost from being sick, but she looks excellent and I can’t say that I don’t worry – worry – worry that this time may fail just the same and that the suffering that she will have to endure will be with no reward. I just want with all my heart for all to come out and be well and remain well. I want this to be the last time for a long while that she has to be in such pain. Please just Pray for her: For her protection and for her easy recovery.

Thanks to All and I will update as information comes. When surgery is here I may update more than once a day so be prepared for lots of updates =). May they all be good.

For Her.

Bobbi


January 24, 2009

Isobel’s Class Won the Pizza Party!!!! She is so excited, now that doesn’t mean we don’t still need Box-tops. Her class is still hoping to win over all and get an Ice Cream Sundae Party. We are doing our best to help. Her class brought in a total of 1380 Box-tops this last time to bring home the win!!! Thanks to everyone out there for helping. She couldn’t beam brighter!!!

Also, I have bronchitis. Yeah!! Oh, and it’s bad. My lungs feel like a ton of bricks and the coughing is relentless. I finally have some good meds after sitting at the MEC for almost 3 hours last night (as Bob sat at home entertaining the troops). Hopefully I will clear up soon and get some energy back. Not that doesn’t mean this has been slowing me down, just a nuisance really. We had an exciting day today despite me being ill. We went and ordered Lila and Naomi’s Birthday Cake!!! I can’t believe they are going to be one in two weeks. It just seems impossible, but is also feels (after last year) like they should be two or three by now =). Lila is finally crawling forward and though Naomi isn’t crawling exactly she does push up to the position. She just doesn’t seem all the interested in getting anywhere. The excitement is already where she is!! Bailynn also had her blood drawn today. I carried her into the Hospital and held her the whole time (uh, note to self: Bailynn is heaving – ok, she is only like 45lbs, but long and huge and heavy – well after 30 minutes really, really heavy) we survived and I got a workout for the day, though I didn’t need it with my already compromised health condition. We should know Monday the results. If all is still well with the infection numbers, the plan will stay as is, if not – antibiotics. I am sure all is well. She is still doing fabulous (my husband will love that word!!). Okay, love to all, hope all is well with you. May you not get Bronchitis (aka: a cruel and evil cold). Have a great remainder of your weekend and I will post lab results when I get them.

As always. For Her. (May Her Voice Be Heard) Bobbi


February 1, 2009

I hope everyone out there is okay. Today is our first day with power since the winter storm came through last Tuesday night. We have endured no TV, being cold, and having an interesting diet, but made it through. There are branches down and snow still covering the ground and somehow today looks brighter. No electricity, five kids, four dogs, and two parents is not a good combination. One generator later however things did take a turn for the better. You have never seen a happier family when the lights came on last night!!

Other than the last week of yet more drama we are doing well and plan to head north tomorrow to Indy to see the Pulmanologist and Bailynn’s Neurologist (we haven’t seen her since last May and she is not going to be happy with us! Oops!). We are hitting the road at 3:00am. Please pray for our safe travels. We have no idea what the roads are like to the north. I am going to try and find out today now that we have the computer back!!! Life without the outside world and no computer is (oh, and we had no phone for 2 days) ruthless.

Okay, today is a new day and I will find the joy in it (with power!!). Again I hope everyone out there is well. I know many are still without power and some can’t even get to their homes. May today’s weather help (and may that projected snow for tomorrow night be wrong!!) .

Bailynn’s blood work came back perfect from last week. Everything is falling into place. Just about one month now till surgery!!

For Her. (with power!!) Bobbi


February 4, 2009

Bailynn is terribly sick. From about 2:00am on Bob and I were up every half hour cleaning Bailynn up. She has been throwing up and has diarrhea. She has continued on this routine since and though I can’t see how she would have anything left to purge, she does. Her bedding is all running through the washer and dryer (praise God this didn’t happen during the power outage). She has thrown up on the couch so has been demoted to a pallet on the floor till her bedding emerges from the dryer. She is not running a fever, but she is pale and looks pitiful. It is blood work weekend again and though I don’t believe this has any connection to the past infection what so ever, we will have to wait and see what it does to the numbers.

Our voyage to Indy on Monday went well. Bob and I both really liked her new Pulmonary Doctor. He was very nice and gave us some great ideas for the future and for when Bailynn gets congestion. We also were glad to see Bailynn’s Neurologist after months of postponing due to infection. All seems the same on that front and there was no change made to the medication. Bailynn is still down about 6 lbs from last July and though she is eating really well again she is not packing the pounds back on. Maybe the rods will help again.

We return to Indy on Tuesday for pre-op and for an appointment with her Infection Disease Doctor. We don’t have to get up as crazy early next time =). The girls were alarmed at their 2:30am wake up time on Monday.

The Twins Birthday is Sunday and hopefully Bailynn will be feeling better well before then. I will keep everyone up-to-date on her health.

Thanks. For Her.

Bobbi


February 4, 2009

Bailynn continues to throw up and now Lila has joined in the fun. My washing machine has been going non- stop since 2:30 this morning. It is a stomach virus and most likely all the girls have it and we will have the joy of 5 little girls throwing up everywhere. Thankfully right now the others are holding out. The virus is suppose to only last 24-36 hours (God willing). I will just get to sit back and watch it move through the ranks and hope it doesn’t come for Bob and I.

For Her. Bobbi

Only one who devotes himself to a cause with his whole strength and soul can be a true master. For this reason mastery demands all of a person. -Einstein


February 6, 2009

Bailynn and Lila are doing much better, but as for the rest of us, not so much. Naomi and I started showing signs of the “bug” last night. Naomi threw up all over her bed while Bob was at class. Today I feel awful. Bronchitis was almost better. We are all laying around trying to get some rest and recover in time for the twins Birthday on Sunday. I remember my brother Benjamin’s first birthday and being so terribly sick that I couldn’t even eat cake. I love cake!!! (Ben birthday is February 22, so it must be a February thing!!) Hopefully Naomi and I will recover as quickly as Bailynn and Lila have (though their appetites are still not up to pare). Maybe tomorrow food will look appealing again.

For Her. Bobbi


February 9, 2009

Lila and Naomi turned 1 yesterday and we had a great little gathering of our family and friends. The twins loved their Birthday Cakes and true to form for small children were more interested in the tissue paper than the actual gifts. It was a great day and hard to believe my babies are a year old.

Over the years you discover who your true friends are. The people who cry with and laugh with you and stand by you at best and worst of occasions. The ones who celebrate no matter what the joys of your life and I feel so blessed to have so many to join in my life with me. Thank you to all my friends and all my family that have provided me with such wonderful support. It is great to know that there are so many people that care. Only good ones stick by you and the rest I believe it is best to let go.

All of the children went through the stomach virus, but it was over as fast as it came and I was really glad to see it go. Tomorrow we head for Indy again for the last time before surgery. I am anxious to hear from Bailynn’s Doctor tomorrow and get a full grasp of what his new plan of action is. Twenty Five more days and she will be straight again.

The Biggest Thanks to Carol and David, Martha Davenport, Cathy Young, Beth, Tim, and Alex, Jim, Amanda, Ali, Jude, Mom and Dad, Bob and Karen, Ben, Megan, and Bella, Jacob and Leahanna, and Mom~mom For Everything. Thanks from the Hammonds!!!

For Her Bobbi

A faithful friend is the medicine of life. Ecclesiasticus 6. 16


February 11, 2009

The trip yesterday went well. We had some fun at the Children’s Museum in the morning, were we ran into Bob’s Cousin’s wife and their children (Isobel and Arwyn were thrilled, small world!!), and then headed to the Doctor’s Appointments.

Bailynn’s Surgeon is ready and after talking to him I do believe he has some new good ideas, but I am still waiting to see how this all turns out. He is going to use titanium rods this time and there will be custom hooks and mounts made specifically for Bailynn’s size and spin. Okay, what does custom mean, $$$$$, but if it will help this procedure succeed Bob and I are willing to take on any cost that we incur for her benefit. Bailynn will be getting a PICC Line again the week prior to surgery. This will help her to not have to be poked during the surgery procedure for blood, IV, or to be put to sleep. It also will insure that she can come home on the IV antibiotics that she did so well on at the end. We fear trying something new and watching to see if her body will handle it. Basically everything is in place and now we pack, prepare, and wait.

We also met with her Infection Disease Doctor and we are all in all done with seeing him. He will coordinate her antibiotics for home and will see her in the hospital, but as of now will not have to make a trip to his office again. (Breath held, hoping it will be so)

A big Happy Birthday to Aunt Brenda (another 11 baby). We hope you have a great day.

The next few weeks will either speed by or slug on, either way March 6th is coming.

Stay put for further. For Her.

Bobbi
“Friends always show their love. What are brothers for if not to share troubles?”- Proverbs 17:17

Caring bridge has a neat feature that will allow me to have Bailynn’s Webpage made into a book with all my Journal entries and all your guest book signatures. Please sign, just say hello, or tell us how Bailynn’s story has touched you. At one year from when I opened this Webpage, I am going to have it made into volume one of Bailynn’s life. I am hoping one day her sisters can read it and really understand all our family has went through and see the power of God, Love, and Family. Please help me in making my small children see what a big difference this has made. Thank you so much and can’t wait to hear from you.


February 12, 2009

Bailynn will be getting her PICC Line placed back in here at Deaconess Hospital on March 3rd. One less thing to have to do up north and a great way to prevent unnecessary pokes. Just a little over 20 days now.

For Her.
Bobbi


February 13, 2009

Well, though the economy had slowly been creeping up on us, we had not until yesterday been fully effected by the swift downturn in the automotive industry. Toyota has offered all of its employees a “get out of dodge” package to walk. Though Bob and I are confident that this economy is going to turn around, we are unsure at what point. We have five children to feed and one with special needs, it is very scary. As for now Bob’s income has been cut drastically and we have Toyota’s offer on the table. Our plans are to investigate all options and go from there. Please pray for us. With energy bills soaring, medical costs as high as ever, food nearly unaffordable, and three people to put diapers on we are afraid of what the future may hold if things don’t improve soon. I will pray for your families and their stability hopefully we all will make it through with jobs, homes, and our dearest friendships pulling us through. I know that the Toyota announcement was on the news and I wanted everyone to know first hand from us what was going on. As for now, no layoffs, but what the next few months could bring – no one knows.

For Her. Bobbi

P.S. Seven years ago today I found out that Isobel was coming. I had to drive 6 hours and wait till dinner to tell Bob. It just about killed me =). Then I had to wait almost 4 days before I told my mom. Which was also very difficult, but I wanted to do it in person. Now seven years later I have an energetic “yellow” haired little Isobel that delights my days with silly antics and great intelligence.


February 16, 2009

Bailynn spent late Saturday night into early Sunday morning throwing up again. We are unsure if it was the

result of a seizure or not, but it smelt sick, so I am going with sick. Also, she spent most of the day yesterday being GRUMPY!!! Maybe she is revolting against surgery!! Today she seems a little better. She is laying in her bed watching a Barbie movie and enjoying the sunshine coming through her windows. She slept late this morning, ate breakfast, and took another cat nap. I wonder if she is just fatigued.

The twins had their one year check up on Friday. They are tiny!! Lila weighed in at 17lbs. 1oz and Naomi is 16lbs 8oz. They are both 27.5 inches tall and though the doctor thinks that we could try to beef them up more they are doing great. They had to get four shots on Friday and Naomi was not going to forgive us. She pouted 4 times as long as Lila did. Once we got in the car they were both fine and glad to be out of the “evil poky place.”

Bob is out of town till Wednesday and it is just the girls and I holding down the Hammonds house. The girls don’t really know yet that he won’t be coming home tonight. Please pray there are not too many tears. Oh, and Isobel is the “Star Student” this week and got to take in a bunch of pictures and things to tell her class about her family and her dogs. She was so excited (also because I let her wear a skirt today with tights). I know she will marvel them all with her less then typical family!! God protect her from the “nu-uh!!” that she incured during the first few weeks of school when her classmates didn’t believe that she had four sisters and four dogs (many of them are only children =(. ) Isobel, I know, will be great.

Two weeks from Friday and it is “S” day. Surgery is coming fast.

For Her. Bobbi


February 18, 2009

Happy 50th Birthday to Carol!!!

Bailynn has had a great week. She has been happy and quiet. She seems content to play and watch movies. She has been eating well and sleeping good. Who could ask for anything more?!?! Little does she know that all that is going to be replaced in just two weeks with recovery and pain again. I hope these next two weeks are bliss and that she does well and continues to be happy.

Bob got home early from his trip, last night, and the girls couldn’t have been more thrilled to see him (me either). We have no plans for the weekend except to rest and enjoy this time before surgery. I hope everyone is doing really well also. Have a great rest of the week and weekend!!!

For Her

Bobbi
~ The secret to having it all… is believing that you do.


February 19, 2009

Many of you that read have known Bailynn since the first day that she joined us in this world. From the exclamation of “Tuberous Sclerosis” to multiple uncontrollable seizures to Brain Surgery, most of you have known her story and lived it with us. A few that started the journey with us have slowly vanished with what I believe to be the inability to deal or understanding of how to move forward. I commend everyone who has joined us for the journey along the way and have let my little girl into their hearts. All that have stuck by us even through the toughest of times have my deepest respect.

I remember the day Bailynn was born with an unbelievable freshness. Even down to the smell of the hospital and the excitement of the moment. Becoming a parent seemed so surreal and seeing her little squish cheeks and tuft of hair for the first time with her big blue eyes peering back at Bob and I was like a moment from a fairytale, so beautiful and unimaginable. My heart filled to the brim with pride, joy, and love. I remember the hours of not being able to be with her, the pain of the C-section (the new found love for pain killers) and most of all I remember the moment the Cardiologist and Neurologist walked into the room. My mouth could move but no words could escape. I felt such failure and thought my husband would be so disappointed with me. I had never known such utter defeat and despair the moment the Doctors told us Bailynn would most likely not make it through the night. I remember praying to God to take her if he must, but I promised to love her and care for her no matter what. I just wanted her. I needed her. I remember the moment Bob called our parents and the inability to relay what had happened over the phone the sense of panic and urgency ripping through his voice as he too fought back tears. I can still see my dad walking into the room in my memory with such purpose and determination to seek the matter. I can tell you exactly how our parent’s faces looked and the moment I handed my dad a little piece of paper with the words “tuberous sclerosis” scratched across them begging him to find out more information. My mother’s tears my mother and father-in-laws prayers. Our parents searching for the words of wisdom and comfort. They knew as little as we did about how to deal with the situation, but the pain was streaked across their faces. I recall the friends and family coming like a stream and having to recount time after time what had happened and what was going to happen. The day was a nightmare even after such elation in the morning with her arrival. Then the moment that I got back to Bailynn the first time, after we had received the news, and the peace that holding and seeing her brought. The love. I look at her today knowing she will be nine in a matter of months and I can still see that little baby staring back at me, giving me the strength I needed and the hope for better days. We have had so many good days despite all the bad ones. We all have our days like May 11, 2000/> that will be etched forever in our memories mine with such clarity and recollection that I will always find strength and a bit of pity in it.For Her. Forever. Bobbi


February 23, 2009

Yesterday was my brother Benjamin’s 21st Birthday. So, as a surprise to him, yesterday morning Bob and I got up early and dressed all the girls quickly, fed them and shoved them into “Rocket.” We headed south and within two hours we were on my parents door step to celebrate with Ben. It was great. We totally surprised him and got to spend the rest of the morning and early afternoon visiting with my family. Isobel wished we could stay longer and Arwyn loved grandpa “So Hugest” TV. Even the twins got a good giggle out of my parents puppies, Emmet & Finnegan (who are our dogs sons =)!!! ). It was so nice to get some of my dad’s grilled burgers and be with my brother for his 21st. My brothers are truly my first children and I can’t believe how old they are getting. When people ask if Bob and I are still “trying” for a boy, first of all I am shocked at their lack of ability to see the amazing quality of having five girls, second I feel like I already have two boys and I love them to death!! It is hard to believe that both my brothers are getting married next year and that they in a matter of years will have more little ones to add to the clan (maybe it will be even more girls!!!! probably not).

Bailynn’s surgery is next week. It is hard to believe, but I am ready. We are going up on Thursday. Bob is going to go to work for a half day and the girls and I are going to pick him up at Toyota at 9:30 am. We are hoping this will give us plenty of time to get everything set up in Indy. I am going to make a grocery store run when we get there and grab some things to help prevent us from needing so much food at the hospital (that is so terribly overpriced!!). Bob is going to be staying in the hospital with Bailynn and I am going to be taking the other four girls back to the hotel at night. Surprisingly Isobel and Arwyn are terribly excited. It is truly an adventure to have Bailynn and I am so blessed that our other children feel no burden towards the time in the hospital. To them it is a retreat from the normal way of life. The hospital has on demand movies, great cable channels, a playground, and playroom, fun nurses and doctors to chat with, and all of us together. If it wasn’t for the cutting on Bailynn part it could almost be considered a (very expensive) vacation.

Thanks for all the cards of encouragement, gift cards to Fazoli’s, Walmart, and Panera, and all the sweet posts. I can’t thank everyone enough. God Bless.

For Her.

Bobbi


February 24, 2009

I want to be famous in the way a pulley is famous, or a buttonhole, not because it did anything spectacular, but because it never forgot what it could do. ~Naomi Nye


February 26, 2009

Well I can’t say things are perfect, but at least we have each other. Bob and I are both searching for other outlets to help our family financially right now until things get better at Toyota/>/>. We are trying to keep positive, but things are scary. When the things you need are getting harder and harder to pay for something has to be done. I am going to start selling embroidered blankets if anyone is interested. I can embroidery a lot of different things with my machine, but fabric quality does matter. If anyone is interested just let me know. I can even do some clothing items (but some are a challenge and just not worth the attempt). I just have to do something to help our family right now. There is no money in the budget for Bailynn’s expenses anymore and this is the only way to make it up. Please pray we find the answer and I pray our country finds a way to mend itself, but part of me knows that not all things can be fixed. I hope all of you are well. One week till surgery.

As Always. For Her. Bobbi


February 27, 2009

Well surgery is coming and to prepare I took Bailynn to get her hair cut on Tuesday. It is short, cute, but short. This is an attempt to keep it out of her incision and the tape that is oodles and oodles of stickiness. When I get a chance I will take a picture and post it. She really looks grown up with it so short.

Also, today was Bailynn’s last session of therapy prior to surgery. She had OT and PT and did quite well considering. She even (never has before) pushed to stand with both feet and kept both feet on the floor while pushing with her arm to keep her up on a bench. She was erect (well hunched due to no spinal support) for a while and sat (with assistance) and did it for a second time. It was amazing even her therapist was impressed with the accomplishment. Little things like that give me so much hope and peace.

Tonight we are taking the girls out to Target to peruse and get some popcorn (popcorn and a coke combo at Target is only $1.10!!!) to get out of the house for a bit. This weekend I am planning on preliminary packing and cleaning (ask my friends, I am always cleaning!!). I know next Thursday will be here before I blink and I want to make sure everything is done well in advance. I am also going to make an eBay store this weekend for my sewing projects. I will let everyone know when it is complete (I know Amanda, but I still don’t see why people would love my stuff =)!! ). I love to sew and hopefully it will be a good way to bring in a little extra cash.

I will let everyone know how the PICC Line placement goes on Tuesday at Deaconess, also please pray for Lila. She has had diarrhea for 11 days now and the Doctor thinks it is just a virus. I just don’t want Bailynn getting it and Lila’s booty is so red and raw.

For Her.

Bobbi


February 28, 2009

 

Everyone is doing well here. I am trying to get us all pulled together for our big trip to Indy. I am sure it is no shock to most of you the shear quantity of things that have to be taken for five children and two adults for approximately six days (give or take). I have been cleaning and going through some of the twins things that they have outgrown. It is totally depressing to see all the little baby things and know that we are done with that part of our lives. Now I just have to figure out what to do with it all.

We had a good time walking around Target last night and getting out of the house for a bit. We bought a nice cooler for up in Indy so that transporting food back and forth to the Hospital will be easier for me. Hopefully it

will make up for itself when we aren’t having to purchase food at the Hospital.

I have started preliminary packing (I know I’m crazy, don’t judge. It is a lot of people to pack for, so the earlier I start the better.) I am also trying to get my home ready for my Brother to come and care for my dogs. I am glad we don’t have to pay to kennel them up this time.

Lila is doing a little better. Her bottom is looking less red and she hasn’t had as much potty problems, hopefully it has subsided.

Stress levels are running high here, but all will be well. I am sure. I hope all is well with all of you out there. I will probably not update again till Tuesday after her PICC Line is inserted. Pray they do well, Deaconess is not really use to doing children! Especially children like Bailynn.

For Her. Bobbi


March 3, 2009

Well, Deaconess has already proved my worst fears this morning. They called bright and early already trying to wiggle out of having to do Bailynn’s PICC Line. I called Bailynn’s pediatrician’s office and they called and dealt with them. So here is the deal, Deaconess had nothing in place to give Bailynn any kind of anesthesia for the procedure and that is how we plan to move forward today though the last time she had one placed she was sedated. If for some reason they can not get it in then we will have to go back tomorrow under full sedation and basically have to spend the entire day at Deaconess. The woman on the phone was so overly concerned about Bailynn’s Tuberous Sclerosis that it made me have to try very hard to not get snippy. It just angers me to no end that people, in the medical profession, are so close minded and inept. AHHHHH. Please pray that at 1:30 all goes well. That the Doctor and assistants placing the PICC will have no trouble and that the need to return tomorrow will be erased. I do not want to have to sit at a Hospital tomorrow!! Okay, whew, it will all be alright and it should not be a surprise that these things occur. I just always hope that the next time we have to deal with local Hospitals will be the time they finally treat Bailynn like a little girl instead of like a “Tuberous Sclerosis” patient!!

With Biggest Love For Her.

Bobbi


March 3, 2009

True to form, Bailynn did great. Now I wish I could say the same for the whole procedure, but Bailynn was a real trooper.

I went back with Bailynn and they had an ultra-sound and an x-ray machine ready to go. I placed her on the table and nurses surrounded the two of us. Bailynn looked up at me with her big blue eyes knowing, it was a look of disbelief. I have to say though Bob and I have been through all this a million times over, it is still hard to have her look you in the eyes and have the moment of complete understanding. She knew we were there for something that was going to hurt and her bottom lip emerged. It broke my heart, but I reassured her that all would be done quickly and everything would be just fine.

Well, I was partly right. The Doctor came in and he was nice. He began immediately. He used the ultra-sound to locate a good vein and pricked her with some numbing agent. She cried a bit but not much. The he proceeded with the needle that he needed to insert the tubing of the PICC Line. They then placed her under the x-ray (this all took only about 15 minutes). He looked me dead in the face and said it was no good and he had to start all over. The team switched gears and started prepping her other arm: all that for nothing and tears rolling down her checks. The Doctor was even quicker in the second arm and within moments Bailynn had a good functioning PICC Line. Her other arm has a good bruise from the failed attempt but should be fine. With the second arm she stared me down with fresh tears but no whimpers. I swear she cried harder getting her hair cut last week. Thanks for all the prayers. It really went so much smoother, despite the first failed attempt, then I could have ever dreamed.

May she get lots of rest tomorrow before our trek north.

For Her.

Bobbi


March 4, 2009

This will be my last entry until surgery on Friday. We are heading up in the morning. I am going to be picking Bob up at around 9:30 am and hopefully getting a good nights sleep at the Hotel tomorrow night.

Bailynn has to be at the Hospital at 5:00am on Friday morning and surgery should start around 7:00am. The surgery could take anywhere from 3-5 hours, depending on how her back is from the last time she had surgery. The surgeon is trying to have a game plan for all scenarios. Bob and I hope that there will be no need for all extra plans and the Bailynn will have a short uneventful surgery. The big things with surgery to plan for is Bailynn’s lack of appetite post surgery (for days) and her issues with nausea. She will most likely be in ICU the first night or two and then move to a regular room. We are hoping that she will get to come home on Tuesday or Wednesday of next week and have planned for that. The “Rocket” is packed and ready to go. It is full!!!! I am just so ready for it to be over. Today was a daze as I tried to get last minute things done. I tried doing mundane things to take my mind of the upcoming event to no avail. I will sleep easier when it is over and she is back home in her own bed. Recovery is never fun, but at least you know the worst is behind you.

Please Pray. I will find a PC as soon as I can to update of Friday.

Thanks to Rev. Kev., Lisa and Family, the Triple T Sunday School Class, and everyone else that has helped and shown such love and giving. I really don’t have the words to express my gratitude. May your families be blessed as you have blessed ours.

I can’t wait to see her up and straight again.

For Her.

Bobbi


March 6, 2009

So far so good. We got up to Indy and into our hotel around 3:45 yesterday. I ran to the grocery store and stocked up on some essentials. I can’t say we slept good, but we slept and got up bright and early to be at the hospital by 5:30am (our time)

Bailynn’s surgery started at 7:56 am (Indy time) and right now they are closing (it is 10:45). We will get to talk to the surgeon when it is over and see how it went, but the Nurse updating us said that everything went really well. I believe Bailynn will go to ICU when she is out I will let everyone know when we get situated in a room.

We are all tired and ready for some rest and to get to a firm location.

The only big things for now are pain management, nausea, and Bailynn will have a catheter until tomorrow. Bailynn is the queen of Urinary Tract Infections, but she has to have one because of the blood loss and blood administered. Please pray that no infection occurs anywhere. She is going to be on 2 antibiotics while here in the hospital and go to 1 when we go home.

I will write again soon.

Thanks for all the Prayers we can feel them here. I have to say I felt such a peace when they took her back. I know that soon all mistakes will be corrected and hopefully all the wrongs have brought Bailynn to her perfect right.

Love and Blessings to All. For Her. Bobbi


March 6, 2009

Well getting to the ICU from recovery was a little more difficult than normal. An emergency case came in and they gave Bailynn’s ICU room to that child. The Chaplain was in the room and speaking with the parents of that child and my prayers and heart go out to that family as their child’s health seems a lot more fragile than my Bailynn’s. The recovery nurses apologized profusely for having to wait nearly an hour and a half for a room, but I told them to not fret. I knew Bailynn was stable and going to be fine and that if the other child needed her room, they should have it.

We finally got to ICU and we are in room 2005 at least until tomorrow afternoon/evening. Then we will move to a normal room!! Okay, so here is the low down from the surgeon. The surgery went great from the rod aspect. Bailynn again is perfect straight and wearing a soft neck brace to keep her head up for relief on her upper spine and the connectors. There was a small complication, during surgery they ripped a layer in between her skin and spine that keeps the spinal fluid in place. They had to patch (sew up) the area and now she must stay flat for at least 24 hours or risk serious spinal damage. The surgeon said all will be fine, but she needs to give it the extra time to heal. Normally we would have had to sit her up by this evening. I am glad we don’t have to. She is still in a bit (okay a lot) of pain when aware and awake. I got her to take a few bites of applesauce and hopefully she will keep it down. We are starting slow and she did get some anti-nausea medication. Please pray that our family gets some much needed sleep tonight (ZZZzzzzz). I feel half zombie right now.

To get Bailynn home we need to get her sitting, eating, peeing, pain managment through oral medication only, and drainage out of her back gone. There are no staples down her back (praise God) only dissolvable stitches. Her eyes are swollen but she looks great.

Thanks for all the thought and prayers. I will probably not update again until morning unless something arises. For Her.
Bobbi


March 7, 2009

Bailynn threw up twice last night. She just had some breakfast, but like always is less then eager to put any sort of food into her tummy.

Another night in the hotel and very little sleep. It is just so hard for me to sit and worry about everything going on at the hospital and be able to close my eyes at the same time. Bob did great with Bailynn though. I can still see the tired in his eyes, but we will make it through and when we get home our beds will be a blessing.

The other girls are doing great also, they have been playing, crafting, coloring, and reading. They are enjoying the expanded cable of the hospital with Disney Channel and Nickelodeon. Isobel has been playing on Bob’s work laptop and the twins are rolling and crawling all over the floor. Arwyn is as content as ever to quietly sit and entertain herself. They are sleeping well despite the total absence of a nap yesterday and were all bright eyed and bushy tailed this morning.

Bailynn is sleeping again. She is running a slight fever and we are still wanting her push for food intake to increase. Please Pray that she keeps Breakfast down!! We are hoping that the catheter comes out soon. Oh, and we are still waiting for the weekend on call Doctor to do his rounds. I am hopeful that I will have good news by this afternoon. Thanks to all for Blessing us with your encouragement.

For Her. Bobbi


March 7, 2009

Well, Bailynn has kept Breakfast down, she is wearing clothes, her IV is out, her catheter is out, and she has been cleared to sit up for lunch. We are suppose to be moving rooms, but again there is a small problem with room shortages. We are waiting to hear if there is going to be a room available. For now she is resting well and glad to be wearing her own (not scratchy hospital clothes) clothes. I will let everyone know if we get to move (please pray that we do the girls are dying to be on a floor with a playroom =), and their Daddy had to go to a community type showering area and would like a shower in the room!!)

Thanks. For Her. Bobbi


March 7, 2009

Threw up again. Everywhere. Tons. Not Good!!!
There is a bed request in to move her upstairs, but still no word as to if she gets to move or not.


March 8, 2009

Bailynn did get to move upstairs yesterday. She is now in room 3011. Not long after we moved she threw up again, a lot (170cc). She didn’t eat dinner and was running a temp. She is doing much better this morning. She ate some applesauce, yogurt, and drank some gatoraide. She has kept everything down since the last major throw up last evening and even got the drain pulled out of her lower back this morning. So right now she is just hooked up to the monitor and has fluids and medication going through her PICC Line.

She even mustard out a smile this morning.

Bailynn is wearing a soft neck brace to keep her head up. After all the throwing up it has been washed multiple times and is quite stained. This morning they finally located a second one in X small and we have a back up. To say the least yesterday was a long day and today can only get better.

Now the other girls had a great time yesterday. Grandpa came up from Tennessee and has been taking them to the playground and playroom. They even got to go to the gift shop. Needless to say Grandpa has been a big hit!!!

Bailynn is completely off morphine now and hopefully that will help with the nausea and her appetite. She does appear a little paler than normal, but is looking a lot more comfortable. Bob, Myself, and the girls could all use some more rest, but we are slowly working towards it.

Keep praying she keeps her food down!! For Her.
Bobbi


March 9, 2009

Bailynn’s day and night yesterday went awesome. She ate, she stayed awake, she even watched some TV, the only things she didn’t like were her breathing treatments to force her to open her lungs all the way.

She slept really well for Bob last night and he looks much better this morning. Now the girls and I on the other hand had a rougher night.

Lila was having trouble going potty yesterday so I gave her some prune/apple juice (heavily diluted with water). She spent last night puking and having diarrhea. Yeah!!! So today I am taking full advantage of the washer and dyer at the hospital. Needless to say I was not able to pack enough for things to be soiled so severely.

I am tired but glad to see Bailynn doing so great. We are waiting to see her Doctor for the first time since Friday. Hopefully he will be positive about all that is going on. I am anxious to hear when he thinks we can go home. The major factor there is pain management and she is doing great!!!

Thanks for the continuing prayers I bet God can’t count how many times he has heard Bailynn’s name =). For Her

Bobbi


March 9, 2009

Bailynn had yet another good day. She sat in her wheelchair for two hours this morning and is currently sitting in her chair getting dinner from her daddy. She got taken off IV fluids and is only getting her antibiotic through IV right now (so yeah, one less cord!!). The only issue that we have run into is her wanting to retain her urine and she had to be temporarily cathed to empty her bladder. This is a typical thing for her, but she needs to pee!

Bailynn’s Doctor said that she can go home tomorrow if she continues to ROCK!! Anyway, she is eating and he was impressed with how much she has eaten, Bailynn. I know shocking right. She eats so little, but he claims that she eats way more after surgery than his typical patients. He also is so amazed by her high pain tolerance. She is a super star.

Pray she pees on her own tonight. That could hamper the plans to head south tomorrow. She is taking the pain medication regularly, but not as often as required. The trip home is long and the biggest concern is getting her home quick and in as little pain as possible.

I will try to update in the morning when we get the news. A Big Happy 2nd Birthday to Jude!!!
Thanks and as Always. For Her.
Bobbi


March 10, 2009

We are home!!!!

Okay, the ride home was not fun, but we are here. Bailynn cried a bit and by the time we made it to Princeton Indiana she was ready for us to get her pain medications from the pharmacy at Toyota. She then slept the rest of

the way home!!

We are now waiting for home health care to come and give us the stuff for her antibiotic treatment. She should only be on the antibiotics for 2 weeks and she will be getting blood work twice a week.

She is sound asleep in her bed and I know she is finally at peace. Bess (our dog) was so glad to see her and immediately jump in her bed and laid with her.

Thanks for the Prayers. Here is hoping her recovery continues to go smoothly. I can’t wait to get some good pictures of her sitting up nice and straight again. She is beautiful!!!

For Her. Bobbi


March 10, 2009

Bailynn had just a small issue this evening. Her PICC Line was blocked and we had to get it declotted The home health care Nurse was here for two hours!!! Anyway, all is working again and she is so happy to be in her bed. I even wheeled her into the shower and washed her hair real quick (it was icky!!), but she can’t have a shower until Friday or Saturday (ewwww!).

She ate dinner really well and her diaper leaked all over her bed, so the urinating thing seems to have passed.

She looks pale still, but content. Even the Nurse that came commented on her placid demeanor. She really is a warrior.

The other girls were just as over joyed to be at home. Arwyn ran upstairs to locate some much missed toys (they were only allowed to take 3 with them). Isobel hopped on the wii with Uncle Jacob, and the twins where so glad to see their jumpers, exersaucers, and wide open space to roll and crawl. Lila was please to be able to smash her face into a nearby puppy and giggle. Home is truly the sweetest place on earth.

We are suppose to return to Indy in two weeks for the Infectious Disease Doctor and then again on April 7th for post op. Hopefully all will maintain its peaceful course. She is just doing so good.

We did finally get to see the incision today. It starts at the base of her hair line and goes all the way to her bottom crack. It is covered with butterfly strips. I will tell you that if I had undergone such a massive surgery for the 7th time I would be in the Hospital begging them to put me in a coma!!! Love to All. For Her and all the Blessings she brings.

Bobbi


March 11, 2009

Last night was long. We got to bed late after having to deal with all the things that need to be done from being gone for a while. I ran to the grocery store, pushed laundry through trying to make some clean clothes to wear for today. None of us got much sleep. Bailynn woke up crying in pain and screaming. After getting her pain medication she was much better and went back to sleep. Naomi began throwing up this morning and Lila can’t seem to kick the diarrhea. Isobel and Arwyn slept till almost nine and they needed it. They are still terribly grouchy and have dark rings under their eyes. The hardest thing on all of us was losing an hour when we went to Indy and then losing another when we sprung forward. Needless to say all this hoping around with the time has done us all in. At least we got an hour back when we came home.

Today we are all trying to regain our stability and get some much needed down time. Bailynn is still very agitated, but understandably. Bob is quick to snip, but is still so tired from sleeping on a hospital couch for almost a week. We all just need to chill and hopefully today will help. Unfortunately we need to go get diapers still out at Babies R Us. The twins have like 4 left (not good) and Bailynn is down to a handful as well. Hopefully that will be the only errand today.

Tomorrow we go back to our regular routines of school and work. Pray we adjust back well. At least there are only a few more days till the weekend.

For Her. Bobbi

Thanks to Uncle Tom, Aunt Carla, Rob, Janette, Sam, Noah, and Emma for visiting us in the Hospital!! Thanks also to Russell and Sandra Law; you are truly a blessing beyond belief.


March 12, 2009

Bailynn had a good night and this morning is in a better mood. She grinned when her sisters came into her room to play on a pallet that I laid down. Though the rods have made her good and straight again, she is still not taking good deep breathes. Her breathing is still so shallow and I don’t think we should expect anything less. Her lungs have been so squished for the majority of her life. I am going to try and contact the Pulmanologist and talk to him about what we may be able to do to help her learn to take good deep breaths. In the hospital she was getting breathing treatments a few times a day and her oxygen levels always increase substantially afterwards. Bob and I are hoping there is something we can do at home that could give her the same results.

Isobel went back to school and Bob to work today. Even though we are following a more normal routine, things still seem out of whack. As Bailynn improves I know things will slowly feel more “normal”.

Bailynn is getting blood work this morning between 10:30-11, they are again going to be monitoring her hemaglobin and her infection numbers. I will keep everyone up-to-date when I get the numbers. Since there is no current infection all the numbers should come back in the normal range.

Another day and another moment of pain past getting towards total recovery. For Her.
Bobbi


March 13, 2009

Yesterday’s blood draw went well and all the blood work came back normal. Bailynn even sat in her wheelchair last night for dinner. She was not happy about it towards the end, but did incredibly well.

Today she is a little more grouchy and isn’t wanting to eat. I am going to try to get some lunch into her later, but right now she just keeps swatting everything away, even boost. She has slept a lot today. I just believe her body is trying to deal with it all and I am letting her rest and not trying to push food until she is ready.

I am hoping to get her up and sitting again this evening for dinner (we are having her favorite, hotdogs!!). Pray her pain is well managed!

I also called the pulmanologist today and I am still waiting for a return phone call. I made her routine appointments for this year for August 3-4 (she will be seeing 9 doctors over a 2 day span!!).

I will update again soon. Thanks again for the continued support, I can’t believe we hit 10,000 on visits to Bailynn’s web-site. It is just so impressive to me to know Bailynn is so loved!!

For Her. Bobbi


March 13, 2009

Bailynn went for a ride in “Rocket” today to go and get Isobel from school. She was so excited and smiled from ear to ear. Now the ride home was a small issue because her pain meds were close to due and she was starting to get fussy, but all in all did awesome. I believe the act of a normal routine thing was ultimately the best medicine.

Now tonight or tomorrow morning Bob and I are going to give her a shower (this will coincide with an enema that she desperately needs and I know will hate!!!). I am just hopeful that she will tolerate it well and enjoy the loveliness that comes with being clean!!

Yah, it is the weekend and we all may get some much need rest and relaxation (oh, wait we have 5 kids!! maybe not!!). Anyway, here is to the joy that will be found when Bailynn is fully recovered and my heart doesn’t break anymore with her whimpers of pain.

Thanks to all. For Her. Bobbi


March 16, 2009

Bailynn is not going potty well. I have given her an enema and she has still not gone #2. She is not peeing well either. I have cathed her and the cath keeps getting clogged with sediment (non-bacteria growing puss in the bladder). She is in a great deal of discomfort from simply not functioning properly. I have put in a call to the pediatrician and I am awaiting a call back. Also, Home Health Care is coming at 11:30 to draw blood and maybe the Nurse can help with the situation.

Bailynn always has a hard time getting her bowels and such back in working order (well Bailynn working order) after surgery. Her cries of pain are breaking my heart down to the soul of my being. It is so heartbreaking.

Dr.’s office just called. I am on the phone right now. I will update again when I know a plan of action.

For Her. Bobbi


March 16, 2009

Bailynn’s blood has been drawn and urine sample taken for a culture to see if she has a UTI. She is doing okay on the couch right now and we will find out this afternoon about her blood results. Last Thursday her hemaglobin level was a smidgen low at 10 and the doctor is hoping they will be higher today, so please pray they are. We don’t want another blood transfusion if we don’t need one.

She still hasn’t had a bowel movement but the nurse listened to her bowels and said everything sounded good and like it was working fine. AHHHH. Okay, so Bailynn needs to poo!! Please poo!!! If she hasn’t by tomorrow they will probably do something, but for now we are waiting.

Hopefully I will have some good news later today. I went to the MEC on Saturday and got a breathing treatment. I need to be well for the girls and though I am feeling much better, I am still fatigued. I am taking steroids and antibiotics for inflamed lung. The medications are making me not hungry at all and even feel kind of whimpy. I am finally getting some good oxygen though and that is lifting my spirits.

For Her. Bobbi


March 16, 2009

Isobel’s class won the Pizza Party again for Box-Tops!!! Thanks to everyone. Keep sending them they are collecting through May 8th and will start again this fall!! We are still working towards the Ice Cream Party!!!

Bailynn still hasn’t pooed!! Keep praying. For Her.
Bobbi


March 17, 2009

Bailynn is running a fever at 101.8. She still has not had a bowel movement. She is currently sleeping on the couch with three of her little sister playing around her on the floor. Lila keeps pulling up on the couch to get a good look at her.

I am awaiting a new cell phone so I can call the Doctor. My puppies (I suspect Minet) chewed up my other one on Sunday night while I was handing over my baby carseats to be passed on to a new baby, and crying (it was so sad), and we are not cool enough to have long distance on our home phone. I do believe Bailynn is okay and that she just needs to go potty. All of her blood work came back better than last week yesterday. Her hemaglobin jumped a point and a half and her infection levels (that are also affected simply by having surgery) dropped drastically.

I have given her all her medications and hopefully that will help with the fever and Bob is stopping by wal-mart on the way home to get more enemas.

Bob is having to go out of town tomorrow through Thursday which stinks, but he is the bread and butter so how can I truly complain. He will be going to Kentucky somewhere (about a 3 hour drive). Just pray Bailynn doesn’t try anything funny!!! =)

Hopefully she will have a bowel movement by tonight. We have bumped all her laxatives up drastically so fingers crossed!!

For Her. Bobbi

Laura and Family the biggest thanks for the Marx BBQ soup, it’s my favorite!!! yum yum yum. It was also lovely not have to prepare something (oh, and Lila and Naomi loved it too!!) Thanks

Thanks also to Peggy for the supplies and Fruit Snacks for Isobel and Arwyn (they begged for a pack last night). I have taken full use of the caths already. Our pediatrition has us cathing her regular right now since she is still not urinating fully. Thanks what a great contribution to our crazy!!


March 18, 2009

Bailynn has a significant amount of fluid leaking out of her back. I am trying to find out what to do. I will update when I can. It could mean a trip to Indy. The fear right now is that it is spinal fluid from the rip during surgery. Please pray. It is a lot of fluid, a lot.

For Her. Bobbi


March 18, 2009

For all of you out there, I am fine. I am doing fine. I am upset that the things with Bailynn never seem to dissipate, but I assure you I am perfectly sound of mind and emotion to do what has to be done for her. I am trying very hard to be patient right now. Bailynn’s surgeon is not on call and his physician assistant is desperately trying to contact him. I have talked with Bailynn’s pediatrician’s nurse and the only test to check and see if it is spinal fluid takes 4 days.

Bob is coming home tomorrow and I am sure a ride to Indy is going to be necessary. The girls are doing great right now and Bailynn is even lying on her bed watching a movie. I have been instructed not to move her until I have been contacted by the surgeon’s office again (just in case). She seems quite well and happy. It is odd to me how much chaos she can cause with such little recognition from her.

Please continue to pray for her and for the doctors to come to some quick conclusion as to what is going on. I have confidence that we will have some form of a plan prior to bedtime, but for now waiting is killing me more than anything.

Bailynn did have the most iddy biddy bowel movement last night and this morning. She just isn’t giving it up. I am not that terribly concerned now that she has passed some stuff, but she still needs to clear out the rest. More than anything the fluid leaking out of her back needs to be resolved and identified.

Thanks for the Prayers. For Her.

Bobbi


March 18, 2009

Bailynn is still doing well despite her leakage. I have two different opinions from Doctors up north. One doctor believes it is a “reabsorbing hematoma” the other believes it is fluid built up from all the scar tissue. One believes we should be seen tomorrow, the other doesn’t have a recommended course of action. Okay, so here is my plan as of 8:00pm/> tonight. I am trying really hard to see the leakage as not an issue, but there have been so many issues at this point that to have a doctor look at it would definitely give me peace of mind. Now I am going to keep an eye on her tonight. I have already changed her bandage so many times that I only have enough supplies for maybe one more swap out (bandage materials are expensive but a must). She is right now running a 101 fever. There is still no swelling and honestly she acts like nothing is wrong with her. If it were spinal fluid the consensus is she would be screaming in terrible pain, which praise God she is not. So, if tomorrow morning fluid is still pouring out of her at this rate and she is still running a fever, we are heading north. If not, I guess I will keep a close watch over the day. I am going to say we are going north. I could really use the peace of mind. I will keep everyone up to date on what is going to happen. I just hope she makes it through the night well. She is on her 5th top of the day and leaked all over her bedding which just beeped in the wash. I just know she doesn’t have enough fluid in her little body for this to continue. Again, conflicting Doctor opinions, so really I am spinning with confusion and wanting to do what is best for her. They did this same thing and it turned out her neck had fractured from the rods last August. I just don’t know how much to trust info over the phone anymore.

Thanks. As Always for Little Miss Drama. Her.

Bobbi


March 19, 2009

I am sitting in a Panera in Indy right now. I am using Bob’s work laptop to feel a little connected to the world. Bailynn has seen the doctor and attempted to have lab work done to no avail. We are just now getting lunch and we were all starving and tired.

Here is the story. Bailynn’s back continued to leak all night and this morning she was running a 101.8 fever. So at around 8 this morning we loaded and headed. (on top of everything, Bob is sick and had to go to the MEC last night when he made it home and is on antibiotics now also). Okay, so after 4 hours in the car of Bailynn screaming, and her back leaking through the dressing, her 2 shirts, and the pillow behind her, we arrived in Indy. The surgeon is alarmed by the quantity of fluid coming out of the incision. It is yellow now. He was concerned, but would like to see if it will dissipate on its own. If it has not stopped in 24-48 hours she has to have surgery again. Pray hard, Pray long, Pray. The last thing we need is for her to be cut again!!!!! His theory is that if it continues to flow as steady as it is, it will pose an infection threat. She was suppose to get off antibiotics tomorrow and that has been postponed for now. I am just going through the motions right now and thinking about what it would mean to have to go through all this again. On a good note the rods look great. After an x ray to see the rods it revealed that all is well with them. At least some good news. Now we just have to get home and wait. It feels like a wasted trip, but I know what the doctor’s face looked like and he was taken back by the leakage. I would just hate to have to return in just a few days for such an awful reason.

For Her. Bobbi


March 19, 2009

We are home.

Bailynn still has drainage coming out of her back, but not nearly as bad as on the way there. Hopefully it will start dying down, but the shear volume that she has lost so far is frightening.

The thought is that it is just body fluid (nothing of great importance, like blood). She weighs all of 40 lbs though and the thought of even one oz of fluid leaking freely out of her is terrifying. If it hasn’t stopped completely by tomorrow night we will be notifying the Doctor. His fear is that the fluid could harbor infection. If it doesn’t stop they will have to open her up and clean it out. He thinks the only reason it is not infected right now is because of all the antibiotic she is taking. So praise God she has been taking it! If there is an issue this weekend and we have to get a hold of him he is on call and we can get in touch with him if things go bad. They won’t, right?!! But just in case, he is going to be there.

Okay, other drama- Bailynn was supposed to have blood work done this afternoon to check levels. Well the PICC Line would not render any blood and after many attempts of pulling back on the tiny syringe the nurse’s suggestion was to stick Bailynn. I know you all get to hear everyday about how much my Bailynn goes through and you must think I am some super skinned thorough bred, but I am not. I turned straight to that nurse and said “no!!!” Not today. No more. No more poking my baby for just one day. She has a PICC and it should work. I think I really took the Nurse by surprise, but I am sorry I just wouldn’t stand there and let her today. Bailynn had been crying and screaming the majority of the way to Indy. She was tired and hungry (it was 3 and we still hadn’t had lunch). We left. I resolved to have Home Health Care come and take care of it tomorrow morning. Bailynn got a “get out of jail free” card today and Mommy wasn’t going to let anymore happen to her!!!

So at 8:30/> tomorrow morning, Bailynn’s HHC Nurse is coming to try and work her magic to get Bailynn’s blood without needles. If it comes to needles tomorrow I will allow it, because we have to get levels (pray no needles!!).

It was such a long day and I am glad to be home, but desperate for answers and resolution. May tomorrow bring the much needed end to all this mess.

Blessings. For Her. Bobbi

God is our refuge and strength, a very present help in trouble. Psalm 46:1


March 20, 2009

Bailynn is doing well today and there is a lot less leakage coming from the incision. I have only had to change the dressing this morning and right now there is very little on the newer dressing. She had to have her PICC Line declotted this morning and that took forever, but blood final escaped the tube and no needles were needed. Now we just have to wait for the test results. She is in a very good mood for all that has happened over the past 2 days.

This weekend we are laying low and allowing more healing time for her. It is Isobel’s spring break all next week and I am excited to be able to get to spend some time with her again at home (I miss her during the day!!).

I will have lab results later today and hopefully the drainage will stop completely. I will keep everyone up to date on the progress.

Thanks for the continued Prayers. For Her. Bobbi


March 20, 2009

Bailynn’s levels came back basically good, but her infection numbers are up and her hemaglobin (blood level) is lower than Monday.

Here are the numbers for people who understand =).
Whiteblood Count 5.2 (5-10,000 is normal)
Hem. 10.7
CED Rate 35 (normal is 0-20)
CRP 1.6
Her kidney functions are normal and Her protein levels (aka nutrition) is all normal. She is still leaking just a smidge, but not much.
For Her

Bobbi


March 21, 2009

Bailynn had a good night. She went all night with no pain medications. She is watching “Ella Enchanted” right now in her room and I am going to give her a shower when it is over. It doesn’t look like she had much leakage at all last night. Just one little spot. We are going to take the girls to the movies today (I have free tickets for doing Disneymovierewards.com!!!) and we will see if that disturbs the area and makes it leak more or less. We are just all wanting to go and do something fun that doesn’t have to deal with Doctors. I also have 3 free kids meal coupons to Bob Evans, but Arwyn wants to go to McDonalds (yuk!!). We will see. I think that some time out trying to have some fun will be good medicine for us all.

Now that Bailynn has went all through the night without pain medications we are going to see if we can start taking her off of them (gradually of course). Oh, she did finally have a bowel movement on Wednesday and another one yesterday. After weeks of the twins having the opposite problem it seemed so ironic to be praying for poo instead of against it =). I hope your weekends go well and that your families enjoy the milder weather (yeah, no winter coats today).

May the leakage remain in history!! For Her

Bobbi


March 21, 2009

No leakage all day!!!! I gave Bailynn a shower this morning and left the bandage off. We went out to lunch at Bob Evans (mommy’s persuasion with coupons is unmatched by any!!!). Then much to our surprise, the girls chose to go to the Library downtown instead of the Movies. They had a blast looking at books, picking DVDs and CDs, and even playing on the Library computers. We got home around 3 and everyone crashed hard, but the best news is that Bailynn’s back didn’t leak at all. She did great. Bailynn loved the Library and getting out. Even the twins enjoyed the selection of baby friendly hard books.

Now the leaking needs to remain gone!!!

For Her. After one great day. Bobbi


March 22, 2009

This morning still no more leakage. I think we are in the clear. We got up and took to girls to the Zoo. Bailynn cried almost 90% of the time we were there. She loves the Zoo normally (though our Zoo is less than great and the girls kept asking to go to Grandma and Grandpa’s Zoo instead AKA Nashville’s Zoo!!). It was windy and chillier than we expected though and Bailynn hates nature, HATES!!!! So needless to say we were not there long (good thing we are members and didn’t have to fork out a lot of cash to get in). We then headed to McDonalds to feed the troops and now they are all happily napping in their beds!!! Bailynn was great at McDonalds out of the wind and outdoors (she is so a city girl) and completely ready for her bed also. She zonked out the moment her head hit the pillow. She is really doing great despite all the crying at the Zoo =).

We are going to brave Church next Sunday if she is still doing well. Pray we can. We have all missed going so much and I think it would truly be one of the biggest blessings.

For Her BobbI


March 23, 2009

Bailynn had another great night and is getting bloodwork done in about 30 minutes. SHINE (signingtime)

Vol. 6 “My Favorite Things”

Sometimes I see you stuck For such a long time

A daily nothing new

Pretend I don’t mind
With lists of things you’ll never do Until somehow you do
And you do — you do — you shine The days and months and years,
they run together
Is it just one day? Or is this forever? You’ve taught me in your lifetime More than I’d learned in mine
And you do, you do, you shine
Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine in your own time Well, maybe I’m too close to see you clearly Or is it now my role to simply believe? You’re just one of those mysteries That may never be solved in time

But you do — you do — you shine

And Sammy will do what Sammy will do when Sammy is ready to do it And Trevor will do what Trevor will do when Trevor is ready to do it And Lucy will do what Lucy will do when Lucy is ready to do it And they’ll do it in their own time
Yeah, they’ll Shine Shine Shine Shine Shine
Shine your light on me
Shine Shine Shine Shine Shine
And everyone will see
Shine Shine Shine Shine Shine
I’m so glad you are mine
And you’ll shine, and you shine


March 24, 2009

Bailynn had another restful night without having to get pain medications. She did really well this morning until she realized she was getting a shower and then she started complaining. She did great though and Arwyn insisted that she needed to shampoo Bailynn’s hair for me. Arwyn did a great job and Bailynn actually didn’t fuss for her at all (hmmm!!). Bailynn did have a very small amount of leakage on her shirt this morning and she did have quite a bad seizure when I was getting her dressed after her shower. Now she is happily watching Isobel play the wii (boring), but more than anything I believe she likes being surrounded by her sisters.

Okay, so I have to tell you a little story about our weekend adventure to the Library downtown. As many of you know Bailynn is currently wearing a neck brace to protect the rod and bone connection at the top of her spine (that is what broke in August and sheared part of her bone). Well needless to say she is being stared at more

than normal with this new device wrapped securely around her neck. I can see the people’s wheels turning and sense of wonder streaked across their faces. The age old question of what is “wrong” with her just about to emerge from their lips (uh, nothing!!). So while inquiring if there was a particular software I was wanting for the girls, the young Librarian asked why Bailynn was wearing the collar. I explained that Bailynn had just had surgery and rods placed in her back and that the brace was protecting her connection. The young girl took a breath turned to her fellow worker and said “See I told you she was fine, that something had just happened and that is why she is in there.” I stood in a bit of shock for a second. Did this girl perhaps think Bailynn didn’t need a wheelchair? I smiled and told her that Bailynn was always in a wheelchair. Her mouth gaped (gaped I mean it). I don’t think she believed me, but the next thing made my heart sing. The young woman looked me dead in the face and said, “But her eyes are so smart, you can just tell she is so smart.” I told her Bailynn is so smart and literally my soul rejoiced that this young stranger had seen the light in Bailynn’s eyes. She had caught a glimpse of what Bob and I see everyday. Somehow she had looked past Bailynn’s little pink wheelchair and saw Bailynn. It was such a blessing that she will probably never realize that she gave me.

Bailynn’s silence is her utter wisdom.

For Her. Bobbi


March 25, 2009

Bailynn did not have such a great night last night. I think it was about 1:30am before she finally fell asleep. Needless to say she will most likely be sleeping in this morning. Even Lila and Naomi were restless, but I think that can be attributed to all the racket Bailynn was making (and it wasn’t crying she was just being loud and not sleeping). Maybe with the rainy day we can all catch up on our lost rest, except Bob who despite it all had to get up and go to work this morning.

Isobel is still enjoying her spring break. I think she enjoyes the sleeping in the most. She is not as keen on having to take a nap, but sleeps so I am not going to make her stop!!! Today Isobel has swimming lessons and I am confident Bailynn will do fine, but still always worried about her pain state. Her anticipation of the pain seems much more dramatic than the actual pain itself. She starts to cry before I even touch her. She was really touchy after the first rod placement surgery for a long time and I can only hope that her pain level diminishes much faster than with that surgery. She needed these rods so desperately to get her lungs open and her organs unsquished, but watching her crying is so disheartening.

I am hoping for a good night of sleep tonight. There is really nothing else on the plate besides swimming. Pray for her body to have some peace. I can only imagine what all her muscles and bones are going through to heal.

Thanks so much for all the continued support, love, and cards. We are blessed by all the people out there making this a little smoother.

As always, For Her. Bobbi


March 25, 2009

Bailynn is in a terrible amount of pain and crying. She is holding her head and even with the pain medications in her she is not comfortable or content. All of the crying is breaking my heart knowing that I have done all I can for her. She needs to close her eyes and get some rest. I really believe that would be the best thing right now. Pray.


March 25, 2009

Bailynn is doing better tonight. I ended up having to cath her twice to drain her bladder. A substantial amount of sediment came out of the tube and I really believe she can’t pee and that is were the main discomfort is coming from. Bob is feeding her dinner right now and she is eating well. I am going to call her Urologist in the morning and try to figure out if there is anything else we could be doing to help her bladder issues. Bob also got her more pain medications on the way home, so she is definitely more medicated.

Hopefully she will sleep tonight (and us also). For Her.
Bobbi


March 26, 2009

Bailynn slept through the night. She had blood work done at 9:00am and I need to call and get the results from Tuesday and today. Her nurse normally calls me with the info, but she is out on Spring Break also. Anyway, I will be anxious to get the numbers. Bailynn is still having a lot of trouble peeing on her own. The only time she seems to do so is when she is sleeping and totally relaxed.

Tomorrow Bob is taking the day off to hang out with his girls and believe it or not we don’t have to do it in a hospital!!!! Whew!! Who knew people could take days off and not sit in a waiting room or surgery waiting room?!?! I don’t know what we are going to do yet (probably something free!!!). I will try to update with lab results later today. Thanks for all the prayers yesterday, Bailynn did finally seem to be feeling better just before bed and after her 3rd time to be cathed. She just loves to keep us on our toes!!

For Her. Bobbi


March 27, 2009

Bailynn got some good news today. Her lab work was good on both Monday and Thursday so she is going to be getting her PICC Line out on Monday. She did well today but she is still having a lot of trouble with transitions from the car to her chair. She really acts like she is in terrible pain until she is firmly in her new seat. Then she seems fine. It puzzles me that she acts like she is so much pain three weeks out of surgery. She is a tough lady but was so glad to find her bed this afternoon. She is resting well right now.

Naomi is not feeling well and she crashed at around 4:30 and I believe she is out for the night. Her eyes are red and she is coughing with a runny nose. Despite this she was bright eyed and bushy tailed at the Movie Theater. Her and Lila were either sleeping or watching “Monsters Vs. Aliens” attentively. Bailynn squealed with joy as we entered the movie theater. It is truly one of her favorite things to go and do. She sat with a big smile on her face throughout the film. I am not saying it was the best movie I have ever seen (by far), but all the girls really loved it. Now they want “Susan” dolls.

Please continue to pray for her pain. I feel so bad when she whimpers and cries. For Her

Bobbi


March 28, 2009

Bailynn had a great day laying in her bed watching movies. Arwyn and Isobel took turns laying with Bailynn on her bed and watching also. I know she really enjoyed the down time and so did her mom and dad =). We just sat around playing games, watching movies, and perusing the Internet. What a great rainy day.

She didn’t get antibiotic for the first time last night since surgery. It makes me nervous, but I know her blood work has been coming back good.

For Her. Bobbi


Every year Bailynn participates in the Riley Walk-a-thon hosted by the SouthWind Kiwanis. She collects so much and has such a high number of supporters that they have made her a group (like an organization) “Team Bailynn.” The walk is going to be May 2nd this year starting at the CK Newsome Center (by the Centre) Downtown. Please if you could give a donation or if you have a business and would like to give a business donation feel free to contact me. Even a simple one dollar bill helps and is worth more if that is all you have. Help us help other children like Bailynn; to bless other families with the care of Riley Children’s Hospital. Checks need to be made to Riley and are 100% tax deduct able!!! Don’t forget Indiana residents that you can request a Riley License Plate at the DMV. Thanks again and our address is 5715 Upper Mount Vernon Rd. Evansville, IN 47712 we don’t have a home phone anymore we went to just using our cell phones to save cash if you need to call email me and I will send you the number (I hate to post it on here.) Thanks ~ Bobbi


March 30, 2009

Bailynn had a good weekend and for the first time in months we were able to go to Church. Naomi is still a little under the weather, but I kind of believe that it is allergies. Her eyes keep watering and her nose is running. She only coughs when she is sleeping or lying down.

Bailynn got her PICC Line out about an hour ago. She did great with the removal and on top of it all she hasn’t had pain medication since 9:00 last night. She seems okay also. She even did better with the move to the car this morning to take Isobel back to school ( =( Spring Break is over). Now I am getting ready to put Bailynn and Arwyn down for their naps, the twins are already in dream land.

We still haven’t made the decision as to keep Bailynn’s appointment next Tuesday the 7th in Indy or cancel it. I still think it would make me feel better if she had another x-ray to look at the rods one more time. I will say her incision looks wonderful, but I noticed today that you can see the attachment point at the top of the rods and he back does have a slight curve forward at the top. It even looks the taddest (probably not a word!!) bit swollen. Also the surgeon has to approve her to return to Therapy, though I do not think she is ready to back in the slightest degree. Maybe in another 3-4 weeks when she doesn’t keep herself all balled up and stops crying about every movement. I think she was rushed back into therapy after the first surgery and I really want to take time in making sure she is well enough. The good thing is that her main therapy is in the pool at the Rehab Center (where she thrives) and that is a lot less impact than other forms of therapy.

Bailynn has fallen asleep in the time that it has taken me to type this. I think having the PICC Line out brings her one step closer to feeling better.

Thanks for the continued thoughts and Prayers. We so appreciate it.

For Her. So her story can help others and her voice can be heard.

Bobbi


March 31, 2009

Bailynn had a lot of trouble sleeping last night. Bob and I had been letting her sleep without her neck brace on, but she is curving really hard forward with her head and neck and we opted to make her wear it to sleep last night. I gave her some pain medications to try and help her tolerate it better, but all in all she was unhappy.

Today her and Arwyn are enjoying some cartoons and her eyes look terribly tired and I am sure she will take a good nap.

Also, I have created a shutterfly page to display pictures of all our lovely girls. There is just not enough room on here to really share a lot of photos. So, for all those out there that want to peruse some pictures, have fun. There are a ton and I plan to put more. Here is the address. http://www.bobnbobbi.shutterfly.com . Anyone can set on up for free and start sharing photos. (uh, we love to take photos so there really are a lot!!!)

Things are still going well and hopefully they continue.

For Her. Bobbi


April 1, 2009

Where to start. There is something sticking out at the top of Bailynn’s back. It looks like a hook or something has come loose. I can’t say I am in panic mode, I am just very disappointed and desperate for answers from the doctor. I have already left voice mails and hopefully I will get a response this morning. I am praying that this is nothing just a piece of hardware that we didn’t notice as much a few days ago, though I know it is not. With the idea of surgery, again, streaking through my mind I am left to despair knowing there is nothing I can do to protect her. The rods that mean so much to her health and well being have been nothing but a nightmare.

For Her Bobbi


April 1, 2009

Bailynn’s surgeon is on Spring Break he will not be back till Monday and again we have an appointment for Tuesday.

I am taking her and meeting Bob at 3:00 on the eastside to get films done on her back. Her pediatrician has a half day so she will be out of the office but will review the films tonight. We are going to FedEx a copy to Indy and two other surgeons in Bailynn’s Doctor’s practice will review them tomorrow.

There is an obvious buldge, not coming through her skin like the one time, but none the less buldging. I just wish and pray and hope and pray that it is nothing. Please let it be nothing. Please!

She is resting well right now and the twins are down for their nap. I can only watch Bailynn and become completely engulfed by emotion and the need for this all to end and for her body to get to recover, for her to have the right to live and the right to not hurt. I just hold my breath and close my eyes and pray that no more cutting will occur.

For Her. Bobbi


April 1, 2009

Bailynn’s x-rays were done around 3:45pm today and then Bob took them to FedEx to be over nighted to Indy. I have heard nothing about the results. I am unsure as to if we will tonight or not now. A local radiologist was suppose to be reviewing the films, but knowing anyone from around here, they was probably taken back by the extensiveness of Bailynn’s case.

I am hoping the pediatrition will call me first thing in the morning once she has reviewed them and that we get a call back from Indy before lunch.

A nurse did look at Bailynn’s back and she held the same opinion as me that things do not look right, but also that they are not grave right now.

Tonight will be without much rest, I fear, with the unknowing hanging over my head. I worry to much as it is and trying to drown out the thoughts get harder when waiting is attached.

I hope to update on here tomorrow when I get more info. Thanks for keeping up. Bailynn is the Queen!!

For Her. Bobbi


April 2, 2009

Bailynn had a hard time sleeping last night, as did her mother. This morning as soon as I could I started making phone calls and this is what I have found out so far:

The local radiologist read the films and their judgement is that the rods on the one side that is bulging look displaced. They go on to say that they have no previous scans to compare to, but from their opinion they do appear displaced. These preliminary findings have been faxed to Indy for the doctors there to review.

There are no words for how Bob and I feel right now. We have tried so hard to better Bailynn and help Bailynn and right now all I can think of is how much hurt she has had to endure. I feel her little body has went through more than anyone’s body should ever have to. Just when I get to dreaming that all is going to be well and better the rugs slips and dreams shatter like a glass bowl on hard tile. Splinters of the idea everywhere and no amount of glue to place them back together.

I know God has his plan, I am hoping it requires no more suffering for Bailynn. No more. No more. No more. For Her.
Bobbi


April 2, 2009

Indy has the films. They are reviewing the right now.


April 2, 2009

Okay, here is the conclusion that Indy has come to:

Bailynn’s “hardware” seems to be still intact. From a comparison to films done on March 19, there seems to be little to no change. They are concerned with the “hardware’s appearance” and the reddening of the skin on her back where it is bulging. This is their top notch advice, “beef her up.” Really? After almost 9 years of life and not a shred of extra weight on the kid, their advice is to “beef her up!!” We try so hard to put the maximum amount of calories into our Ethiopian like child and nothing. Her metabolism is through the roof. I just can’t believe this is their only bit of wisdom. So, on Tuesday, we journey to Indy and they are going to have a look. The main concern is that the metal will come through the skin and if it does so the rods will have to be removed again!!! The nurse I spoke to thinks that due to all the surgeries and it being in the same location that the metal came through last time , that the skin is compromised or thin. Her advice was to not let the area get too much contact with any other kind of surface (aka sitting up or lying flat on her back). So lay on her side and eat. This is the expertise that we are paying for. AHHHHHHH. Okay, so an extra “fake” boost today I wonder if they have stock in “fake” boost or think that it grows on trees. This stuff is not free! Deep Breath. I am releaved that there is no visible sign of damage or anything, but that doesn’t explain the recent development. Tuesday, only 5 day away. Tuesday. Pray for her skin, pray for her rods, pray for fat to ajoin to her. I wonder if they have reverse liposuction?

For Her. Bobbi


April 3, 2009

Bailynn is doing okay this morning. I have given her a shower and got her dressed because Naomi decided that today was her day for drama. This morning I gave Lila and Naomi banana nut Cheerios for the first time and with in 20 minutes Naomi’s right eye was almost swollen shut and her left eye was starting to puff. After talking to our pediatrician I gave her some bennadryl and her eyes look way better now, but still swollen. Banana Nut Cheerios only h as “Natural Almond Flavoring” I wonder what a real Almond would do to her. Anyway we have to go to an allergist now. Yeah!!! What is it with my kids!?!?!

I am now waiting to hear when and where. Naomi will not be having Banana Nut Cheerios agian any time soon. For Her.
Bobbi


April 5, 2009

We have had a good weekend and even got a for a bit yesterday and went to Church and Wal-mart today. I would like to thank everyone for all the Boost and “fake” Boost. I know it probably sounds so silly, but it is like Christmas. Boost is such an important part of Bailynn’s diet and such a significant amount of our food budget goes towards it, that it is amazing to receive it.

Bailynn’s back is still not looking great. The skin around her “bulge” is red and she still does like motion all that much. Yesterday we went to an Art Fair downtown and she did great though. She loves noise and action. There were so many cute things. Isobel’s art teacher was there and she was so excited.

Naomi is doing much better. Her eyes were swollen till yesterday and now we tease that she really would love a bag of Almonds, not so much!! She is going to see an allergist on April 15 at 2:00. Till then I am not allowed to introduce any new foods to her that she hasn’t already had. They are afraid that it could be bad if she got something with real nuts in it rather than just extract.

Pray that Tuesday goes well and hopefully the weather doesn’t try anything funny!! For Her.
Bobbi


April 6, 2009

We are heading to Indy in the morning. Hopefully we won’t freeze. I will update tomorrow when I get a chance. For Her.
Bobbi


April 7, 2009

Bailynn screamed and cried the whole way to and from Indy basically. She did take small breaks before she started up again. Our heads are still ringing, but the good news is that her scans came back great. Her rods look good her spin looks good, she just wants to cry. Nice right. Now everyone is in bed, but mom and dad of course. We are left to clean and gather and prepare for tomorrow. I just want her to not hurt. I could really use for her body to have some peace and the doctor has no answers. Still just to fatten her up. Lard. Lots and Lots of Lard!!! I don’t know. I am just so tired and these people just can’t seem to get it right. Bailynn is good a straight and I know time will heal, but for now I have to sit back and watch. So sad. So heartbreaking.

Again, at least the rods are good and her spine is intact.

In all my life I never would have seen what all our family has been through over the past nine years let alone the last year and a half, watching your child almost die and go through surgery after surgery is like having little pieces of your heart ripped out slowly. I could never share with you words that could truly express how I have felt or how our family is truly a rock. You have never seen seven people so tightly bonded. The fight for Bailynn has drawn people from all walks of life to us. The fight for Bailynn has brought me friendships and insights I never would have had. The fight for Bailynn has taught Bob and I what love really is and what unconditional truly means. My children have seen things and befriended children that others would avoid contact or words with. All of this because one little girl was born 9 years ago on a sunny day in May. It is amazing to me that one person can change the course of life so drastically. The moment she came to be it was if God had said “This is your moment to shine, go!” We have taken the task with open arms. I have never been disappointed with my life, never cried for myself, and I have never wished it all could be different. That is not to say I have not been sad for her, hurt for her. I have prayed for her to be healed, I have prayed for her to be happy, and now all I pray for is for her to be her. She doesn’t need healed, she is perfect the way she is. She is the perfect Bailynn. I wouldn’t be me if she wasn’t her!! Isobel and Arwyn wouldn’t love a child like Bailynn if it wasn’t for Bailynn. God is good and he is good all the time. So the next time something in your mind that is terrible happens look for God’s good. It is there. I know it is. My purpose was to be Bailynn’s mom and to see that there is a big little world of special needs people who are exciting, loving, and more than anything the most loyal and loving friends anyone could ask for. I am so excited for my children. The world has no limits for them. They have discovered the secret of life; it is loving all – all.

It is always unbelievable to me when amazing things happen for Bailynn and yesterday was not exception to the cause. A couple weeks ago there was a big fundraiser in Evansvillecalled, Guns and Hoses. It is were Firefighters and Police Officers get together and box to raise money for organization and individuals with needs. One of our best friends is a Firefighter and found that all the Firefighter money had not been allotted yet and placed Bailynn’s name in for consideration. Bailynn’s story was given and yesterday
I received a phone call that Bailynn will be one of two individuals to receive funds from the Firefighters amongst many organizations. I spoke to a very kind man who is set on Bailynn going to Disney World after so many surgeries in such a short period of time (another Disney Fanatic, God truly is good). So in January we will be taking Bailynn to Disney World thanks to loving and kind Firefighters of Evansville. I know January is a bit away, but Bob and I want the twins to be bigger and don’t want to go in the dead of summer (we have done it before and icky, it was hot!!!). After I hung up the phone it was all I could do to keep myself composed enough to call and tell Bob. His response was much the same as mine, shock. Bailynn is blessed by so many and what I would give to place those Blessing back on them. Maybe Bailynn’s smile, I know it melts my heart everyday. She was 15 months old when she smiled for the first time (one month post brain surgery) and I will never forget that day. Every time she smiles I still see that little baby smiling for the first time at me making my soul rejoice knowing she is happy. Happy being her.

God is Good all the Time!!!

Blessings. For and From Her.

Bobbi


April 9, 2009

Bailynn had a great day yesterday. She didn’t cry even half as much as she did in the car on Tuesday. Not to say that when I put her to and from the car she didn’t complain heavily. She is right now laying on the couch watching “Clifford” shaking Sylvia(her Caterpillar). She needs a shower today, but besides that our day is going to be very smooth.

Okay, I wanted to tell everyone a little about what the Doctor told us on Tuesday. I was so tired when we got home that I really didn’t have the energy to go into detail.

His reasoning that she acts as if she is in great pain is because he realigned her pelvic bone and now she is sitting on her butt in a totally new position. He thinks she could be putting more pressure onto her bone or even a nerve and suggested putting foam/cushioning below her booty. He told us it will be months before she feels like herself again and quite a while before the bone grafts will be considered completely healed. His thought is that she will be able to return to Therapy in as little as 6 weeks, but maybe closer to 8 (seems like a long time). Healing is what she needs to do most of all right now. On top of those few things, he wants her to continue to wear her neck splint when she is going to be sitting for long periods of time. (She is blowing rasberries right now and Lila is trying hard to help me type) I will look forward to a completely healed Bailynn, when I don’t have to worry so much about the rods breaking or shifting and causing her more pain. (Okay, Naomi is trying to listen to Bailynn’s Ipod right now, too funny!!) Anyway, yesterday was a good day for Bailynn and today is turning into one. Now if she can keep this ball rolling =).

On Tuesday, April 14, downtown at the Firefighter’s Headquarters, there is going to be a ceremony for the recipients of the “Guns and Hoses” money. It is like a press conference and I am sure it will be in the paper and possibly on the news. It is being held at 2:00 and our family is going to be present.

One day at a time. For Her. Bobbi


April 11, 2009

Bailynn is having a good weekend. The Easter Bunny has come and everything is ready for when the girls wake up in the morning. They have $1 bubbles, kite, sunglasses, ring pops, and chocolate bunnies, I was even able to get them sterling silver rings on eBay for 99cents. They needn’t know that the Easter Bunny is on a really tight budget this year.

Bailynn has had a great day of watching movies between Bob and mine’s bedroom and the couch. She has smiled, laughed, and even participated in our family events today. Bob, my brother Jacob, and my dad all helped me put in a garden today (yeah, I am going to get to make fried green tomatoes!!! Love them.) I planted 13 tomato plants (what if one dies?!?!? I need extra. ) I am so excited can’t you tell. It is empowering to feel like I can grow some food for our family. I even got some mulch for the first time in two years and got to make my flower beds look a little better (a little) the weeds and overgrowth aren’t so pretty, but we will get to that. We are trying to make the back yard have grass. Grass??? Hum, I wonder what that looks like. We grow great weeds here “weedis victorious” is the variety that we grow. They grow in shad, sun, rain, wind, snow, heat, cold, ice, and I even believe my weeds would survive a nuclear war =). Bailynn doesn’t go back to the Doctor for a while now (not till July!!!), but Naomi takes over going to the Allergist in a week. Bailynn has to go to the Dentist on April 20th to get a tooth looked at that is coming in on top of another tooth. I am pretty sure that is not how they are supposed to come in. I am afraid it is hurting, but she screams for no reason most the time, so I am not sure. I am afraid she may have a UTI again and will have to call the pediatrician on Monday about that and Bob is going out of town for most of the week next (yah!! – sarcasm). Okay, anyway today was great Doctor visits will come and we will cross those bridges when they come.

I hope everyone has a wonderful Easter. I know that we are going to have great fun hunting colorful plastic eggs in our family room tomorrow.

Big Love, Bigger Blessing and as always, For Her.

Bailynn


April 13, 2009

Thanks to Peggy we have done a preliminary UTI screening and it does appear that Bailynn has one. Once Bob gets home tonight one of us is going to run a urine sample to Deaconess to be tested and see what the results are. Bailynn is randomly crying out and I believe it is when she is going potty and it hurts. Right now she is doing great and has even let Lila crawl all over her this morning. Lila and Naomi find Bailynn fascinating. We had a great weekend despite the trouble with urinating. We did have to leave Church service before it was over yesterday because of Bailynn, but she told us she needed to go – so we did. We then grabbed lunch, came home, and let her take a good nap. The girls had a great Easter. I think their favorite thing was the kites they got and they wanted to fly them in the house =). Hard to explain that it just doesn’t work like that. I am working hard to recover from the weekend with mounds of laundry to do and floors to clean. Tonight Isobel returns to Horse Back Riding Therapy and though she is excited she is also nervous. Bailynn’s Press Conference thing with “Guns and Hoses” is tomorrow and Bob heads out of town on Wednesday and will be gone through Friday. The week will be at a close before we know it and we started Monday. (Right now the twins are fighting

over Arwyn’s magnadoodle, we are going to have to get them two. Tears are rolling.)

I will let everyone know how the urine analysis goes. Maybe if it is a UTI Bailynn can get some pain relief with an antibiotic.

I hope everyones weekend went well and week goes smoothly. For Her.
Bobbi


April 15, 2009

Here is a bigger shocker. Bailynn has an UTI. We took a sample by the hospital yesterday and it confirms what we already knew. She is doing well today despite crying every time she is peeing. She is smiling, playing, and causing trouble ;). I go and pick up her antibiotic when I go get Isobel from school.

Yesterday’s press confrence with the Guns and Hoses people was awesome. There is a clip on http://www.14wfie.com and an article on the Courier and Press website. They gave Bailynn a large framed poster of Cinderella’s Castle that Isobel and Arwyn have been trying to decide where to hang (for some reason the location keeps being in their room!!!)

Thanks to all the “boost” Angels. We so appreciate all the “boost” she is drinking tons of them and a giant thank you to Judy’s Bible Study. What an amazing and thoughtful gift =). Another Thank You to Jim and Lola Stock. There are so many wonderful people loving Bailynn everyday. Thanks.

Thanks Again. For Her. Bobbi


April 16, 2009

What a difference an antibiotic can make!! Last night Bailynn slept through the night without waking up and crying for the first time in over a week. I also gave her an enema last night, so she was feeling better all around. The other four girls all have a cold and Isobel is currently running a fever. Bob is still in KY and we are holding down the fort =). I am very tired because when Bob is not here I am terrible at going to bed at a decent time!! Tonight I am going to try harder.

In the mist of all Bailynn’s chaos last fall we never took Isobel to get an echo to see if she possibly (not likely) has Tuberous Sclerosis. Due to recent developments in our family we are going to take all of our younger four girls and get their kidneys and eyes looked at over the next three weeks. We still owe $$$to the Rehab Center because our Insurance denied Isobel her benefits claiming that her diagnosis of Language Processing was not good enough. At least with the scans we can know without a doubt whether or not Isobel’s Language struggles are related to TS. There will be a day that my babies will want to have their own babies and I definitely want them to know if they have this disorder before hand. Please pray that all goes well.

For Her. Bobbi


April 18, 2009

Do you ever catch yourself wishing days away? Do you have a countdown to Vacation or Surgery and you are slowly ticking off the day until? I do. I catch myself counting my life away waiting for things to happen instead of living always in the moment.
Last night I sat playing with the twins wondering where all the time goes. It was there. I had it. I spent it or wasted, however you want to look at it. I have counted down many days of Bailynn’s life. Waiting for her to be bigger – stronger. Waiting for the right time to hopefully make things better for her. Counting down the days until she will feel better, return to the doctor, or just simply watching with reserve for a new “trick.” I am always counting.

The one thing you can’t buy, but can spend abundantly. The one thing you can’t earn and when it is gone it is gone. Time. We all say it. Time flies, but not always when you are having fun. There are moments when time seems to drag and those are always the lulls. The times we wish to not be stuck in. The “bad” ones. I have tried for years to find the good in the bad with much success. I feel that though things get rough and tough I can normally keep my chin up and my mind focused, but I am still counting. Why? Why do I so desperately want to spend all my time. Today I am making it count. Today I will start (though probably still counting) to try to not always be waiting for the next thing. Waiting makes me crazy. Wondering what will happen next. So I go on Vacation in 8 months and 15 days (counting). So Bailynn’s Birthday is in 22 days (counting). I want to still be anxious to get to those days just not waste the days in between waiting. Bailynn has made me anticipate the next move and today I am giving it away. I just want to take a rest from counting down.

I send your families love and peace. Enjoy the beautiful weather today and spend your precious time wisely. In this economy we are all spending our money with such thought, but what about our most presious gift of life.

“For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope.” Jeremiah 29:11

Love. For Her. Bobbi


April 20, 2009

Fevers swept through the ranks this weekend, but thankfully left Bailynn unscathed. Now everyone, though still coughing, is looking much better and not whining as much.
Bailynn is going to the dentist today to get a tooth looked at that is trying to push through above another tooth. I think the dentist will have to pull the one below to make room. She spent a lot of last evening screaming and crying and we have no answers as to why. I gave her an enema for good measure, but I don’t believe that was the issue. Today she looks tired and is very quiet (maybe her throat hurts from all the crying). I know she will nap well this afternoon, at least she should.

I also had the fun job of going through summer clothes yesterday (despite having no signs of the upcoming summer weather, hopefully the warm weather will show at the end of this week like they say). It is always a big affair to sort through all the clothes. Isobel’s wardrobe is skimpy to say the least. Since her catching up with Bailynn in size, handing down clothes has become obsolete. I did some on-line shopping yesterday and found some awesome deals and had coupons to make them even better. I got knit skorts for $3.80 a piece from Children’s Place’s website. I love the internet!!!! I didn’t even have to drag 5 kids to a store!!! I am now sitting a watching my swamp of a backyard disappear below more water wishing for some dry weather (oh, and our grass is like 2 feet tall because the rain only stops when Bob is gone or at work!!). Bob leaves again tomorrow and will be gone till Friday (boo!! the sun will shine and the yard will be able to be mowed!!!). The week
will probably drag on and it will seem like Friday is never going to come. For today we are watching movies and relaxing in the Family Room. It would be nice if his trip was canceled =). It is just a week. Right?!? Enjoy the glum watch a movie!! Hopefully the dentist appointment will go smoothly!! I will update later.
For Her.
Bobbi


April 21, 2009

Well the fever came and got Bailynn today (101-102 for most of the day). She has had lots of extra seizures, been grumpier than normal, and hasn’t napped a wink. Is today done yet? The other girls are feeling much better and only Arwyn continues to cough.
We went to the Dentist yesterday and he recommended that we wait and see what the tooth does. There is little to nothing he can do right now. He did seem to think that Bailynn is going to require a retainer and possible future braces. She has just bucked her teeth out so far in the front with her tongue thrusts. She is currently screaming. My ears are ringing. Now we have to see if there is an orthodontist in town that would see her. I don’t know. I am not going to hold my breath =).
Bob is actually coming home on Thursday, so the week got a little better. Now if Bailynn can just get some rest and kick this cold in the booty. I am done with sick!!!
Alright, I have diapers to change and I think I am going to go ahead a lay Bailynn in her bed.
I hope everyone’s evening is going well and I will write again soon.
For Her.
Bobbi


April 23, 2009

Bailynn has went from fevers to coughing fits and with coughing fits come tears. Her already subpar respiratory system has a hard time dealing with deep coughs. The upside is Bob is coming home late tonight and I am sure a trip to the pediatrician is inevitable. Arwyn also continues to cough and ask for some form of medication to help it subside. There is little out on the over-the-counter aisle that truly helps with uncontrollable coughing fits (that is safe by today’s standards). I have given her cough suppressant and some regular old Tylenol and she continues to complain. At least through Arwyn’s voice I can begin to decipher what Bailynn may be thinking. Naomi is also still coughing just a smidgen, mainly while sleeping and Lila’s nose continues to run. Maybe the warm weather will drive it out, here is hoping.

Happy 32nd Wedding Anniversary to my parents. What an amazing achievement =). I hope you two have a great day (I know working).
For the most part today is going to be slow. There is no extra stuff to do, no places to be. Isobel bounced off to school happily wearing a new pair of shorts and sporting no jacket. She was so excited. Tomorrow she has already planned out her wardrobe of wearing a skirt. She is so funny. The twins are cruising around in onesies today, sock and pant free. I think they are surprised at the new found freedom with less clothing slowing them down =).
May the weekend really be a beautiful as they are predicting and may my children find good health.
I wish everyone the best day.
For Her .
Bobbi


April 25, 2009

Naomi and Bailynn are sick. Naomi has asthma and Bailynn has a compromised lung capacity and they both have a respiratory infection that is so bad that the Doctor at the MEC thought that Naomi had pneumonia. If left unattended the doctor thought that perhaps by tomorrow or Monday Bailynn and Naomi would have full blown pneumonia. Thank goodness I took them today. They are now both on breathing treatments and antibiotics. Naomi is also on a steroid because of her asthma (and she is sleepy well for the first time with out coughing in nights). I have said it before, it is never dull here!! Though they both are sick they remain in good spirits and the Doctor believes the other girls were able to pass the cold quicker because they don’t have low functioning respiratory issues.
We are laying low tomorrow and letting everyone get plenty of rest. They both have to have breathing treatments 4 times a day, yay. I just want them to feel better (and for Amanda, would have took the pink eye =) oh and we saw a giant mastiff “max” today at the pet food center).
Anyway, I am glad Bob has been home for this all and that the windows are open wide welcoming the better weather (at least vectren won’t get as much money next month!!). Have a great Sunday and I will let everyone know how my sickies are doing and Naomi’s allergist appointment was rescheduled for May 5 because Bailynn was really sick with fever on the day that she was suppose to go.

Alright. Love to All. For Her. Bobbi


April 27, 2009

Bailynn slept very little last night. We still have a lot of coughing going on here. Tired is an understatement to the situation in the house today. I believe everyone of the girls will welcome nap time and hopefully find some rest.
I spoke to our insurance today about making sure that all of our medical tests over the next few weeks will be covered. They are working on verifying it for me. Please pray they do. They are such a pain in my backside!! It was a long weekend and a break from the coughing and congestion would be a great change. Even I have started and feel horrible. I don’t know how I would get everything the gals get =).

I hope everyone else’s weekends were healthier than ours and maybe we will send this illness packing soon. For Her
Bobbi


April 28, 2009

Heading to the pediatrician for an appointment at 9:40. Lila has joined the green snot/ coughing party. Yay, the doctor. Well she will probably be added on to the breathing treatment regiment and now it is raining. Bring on the dreary. Bailynn is still coughing and so is Naomi though the snot has seemingly calmed down a bit. I am getting very little sleep and my throat is raw from all my coughing. The good thing is Bob is here right now. He is going into work at 3:30 today for so kind of alternate shift and I think he is doing it again tomorrow. It will make for long night, but I will have him during the day.

I will let everyone know about Miss Lila and her need to join the “sick” club. For Her.
Bobbi


April 28, 2009

Lila is now on the breathing treatment and antibiotic and Arwyn is on an antibiotic. Isobel seems to be the only little lady that has come out clear. Now we have 12 breathing treatments a day for 3 ladies. I should just be wearing the machine around in a backpack =).
I also wanted to remind everyone that this Saturday is the Riley Walk-a-thon. If anyone would like to donate there is still time. Please just let me know. We are so far behind this year because of the sickness and such with the girls. Team Bailynn doesn’t even have t-shirts like I wanted to get. Oh well. There is always next year. Just email me if you would like to donate kanstense11@aol.com .

Thanks again to Everyone for the prayers. For Her.
Bobbi


April 30, 2009

Well, we are not sounding much better and the twins still have runny noses, but everyone is looking healthier. Today it took every bit of will power to get out of bed. I am just fatigued to my bones. Isobel still remains the only girl with no coughing and sicky. She is lucky and I am glad. Bailynn sounds the best with very little coughing and such. I am glad I took her early and that her body has responded so well to the medications. She also holds still the best for the breathing treatments while Lila and Naomi squirm. The Doctor gave me a face mask for them, but that is useless.

Bob is gone to work again this evening. It has been great and a little strange having him home during the day. I get less done and stay up too late waiting for him to get home. Not good.
Tomorrow is Friday and I am so looking forward to the weekend. Even the Walk-a-thon should be tons of fun (just hoping it doesn’t rain). We haven’t even raised half of what we did last year, but I still feel good about the donations we have got. Bailynn is such a good little helper for Riley.

Life. Somedays are just better than others.
I hope everyone’s weekend is great. I am seeking rest this weekend.
Bailynn’s Birthday is in just a little over a week. She will be 9 on the 11th. We don’t have any plans. I am just so happy to see another birthday for her. She afterall wasn’t suppose to make it through her first night.
For Her.
Bobbi


May 3, 2009

It seems we were not the only ones who struggled with collecting the same amount as last year for the walk-a-thon yesterday. The economy has gripped all ends of life and is trying to drag it down. We will not let it. Despite it all Bailynn’s Team came away with the Trophy this year. Biggest Thanks to Evapar for their Corporate Donation. Thanks to Carol, Beth, and Alex. Thanks to Jim, Amanda, Ali, and Jude. Thanks to Mamaw. Thanks to Jacob and Leahanna for coming up and enjoying such fun with us and biggest thanks to everyone who donated and gave Bailynn a chance to help other kids just like her. She loves the walk and was so excited when we pulled up this year. There are clowns and many wheelchairs full of smiling little faces. I have to say the crowd was down this year due to the rain clouds looming over, but the weather was wonderful… cool and breezy.
All of the children are recovering great from the latest batch of sickness. I am the only one that it continues to stick to like glue, mainly because I am not on hefty antibiotics or glorious breathing treatments. I have intentions of going to the doctor, but I kind of feel like rest may be the best medicine and opted to nap when the girls were.
We still have our windows open wide welcoming the cool spring air and the smell of rain. I love this time of year. I know it will only be a matter of weeks before it is 104 degrees so I am soaking it all up!!
Bailynn’s back still haunts me with the metal sticking up just below the surface of her skin. She is eating really well and all the pipes are flowing again, she is just skinny. If you took one look at Isobel anyone could conclude that this is genetic =). Skin and bones. Bob and I are still working diligently to pack pounds onto her and it is truly an unsurpassed effort with no visible results. I am ready to start feeding her strait lard with bacon grease flavoring =). Not Really!! Please continue to pray that the metal stays safely tucked below her skin and muscles. Other than that I wish everyone could see how good she is doing. I think she is ready to return to Therapy. She is happy and tough. She cries less and allows her body to stretch out more. She is doing so great. I do plan on calling tomorrow and getting the prescription to release her to therapy. I think she will be thrilled to get back into the pool at the rehab center.
I also have been working on getting us a new case manager through Anthem and one finally called Friday. She was so nice and also agreed that we should not be paying for all the things that Anthem is denying Isobel for. She is going to work hard in finding out what is going on and call me back next week. She is also going to verify if Anthem will pick up the cost of all the testing for the other girls to get looked at for Tuberous Sclerosis. We have a second case of it in our family and it is pertinent that we get all the girls looked at now. The new case manager was going to see what Anthem would do with blood testing (as far as paying for it). I am not going to even delude myself into believing they would pay for such an expensive test, but I will hold out one smidge (very tiny) of hope. That would be the easiest way, but also the least reliable (due to the fact that genetic testing for TS is so unreliable and basically still in the research stage).
Overall the last few days have been great even though I always feel like we are spinning our wheels in idle waiting for the next round of stuff. Naomi goes to the Allergist on Tuesday morning to see why she ballooned up after eating Banana Nut Cheerios and the week is pretty calm after that. Bob is going to continue the evening schedule this week for work so he will be here during the day and Isobel has her Kindergarten Program on Thursday at 6:00pm (she is very excited that they are singing Disney Songs!!). I will continue to keep everyone informed with our latest news. I hope all of your families are doing well.

For Her.
Bobbi


May 6, 2009

Our Insurance is still trying to be a pain in backside, but this week has definitely taken a different tone. My husband, who I thought was the ring leader, but was wrong (Tom), took me to a motherhood banquet last night that was hosted by “Life Choice.” After days of being strung along about some secret event, my need to get a new outfit, and my hair done, I ended at this banquet. Confused and surprised by my parents’ presence I went through the motions of being at the event.
The kids were glad to see so many people they loved and then the truth came out. Bob’s Uncle Tom had nominated me for “Mother of the Year” (Thank You Tom). I was one of five finalists. Unbelievable right!?!?! Long story short, I am the 2009 “Life Choice, Mother of the Year.” I am so honored but slightly mystified that by doing my job every day, by being who God made me to be, people wanted to honor that. Being a mom is my favorite thing and having my husband by my side makes me better at it. I would change not one thing about who I am and the little people that have defined and molded me into this glorious crazy person I am today. My family is my ultimate gift from God. I need no others. My mom and dad always taught me that my brothers and I came first. No matter what we were number one. They missed little to nothing of our childhood because they chose not to. They chose to be there. I learned that simple rule from them that the children are first and my children know they are loved like no other. I take so much joy in hearing their little voices proclaim their love for all around them, but especially their love for Bob and I.

Thank you to all of you that knew and again thank you to Uncle Tom. It was so sweet to here you speak of me, I just never take time to dwell on the challenges Bob and I have faced. I live it for all it is worth, good or bad. I hope all of you mothers out there have a glorious Mother’s Day. Biggest love to you all and I know your children appreciate you so much. Have a wonderful day and I love you Mom =). Don’t forget Bailynn’s 9th Birthday is Monday!!!

For Her (the one who first made me a mom) Bobbi


May 8, 2009

Bailynn got her release for therapy. We are hoping to return next week or the following week. I think she will be so glad to get back into the routine. She is really doing great. She laughed and smiled at me when I gave her a shower tonight. Naomi was messing with her and she was giggling at Naomi’s mischief. Now the rods are still pushing at her skin and she doesn’t like to shift a whole lot, but she is doing really well compared to just a couple of weeks ago. I rarely use her neck brace. She is doing such a good job holding her head up and not “hunching” forward. She is still having trouble eating 3 good meals a day. She is so funny and some days will eat a great lunch and next to nothing for dinner and then the next day the opposite. She has really taken a liking to tomato soup!! Like Mommy!!
The other girls are doing great also. I can’t believe Isobel is almost done with Kindergarten and that Arwyn will be starting school in just a little over a year. No matter what, they just keep growing!! Naomi and Lila have gotten such big personalities to go with the their tiny little bodies. They go and get their 15 month shots next week. It seems so unreal that they have been here for 15 months. Our home and hearts are full of little girls laughter and for the first time in months things are going really smooth (knock on wood). The days roll by wiTH little drama and we are seemingly slipping back into a “normalcy” and I love it. What a wonderful life. I hope everyone has a great weekend and a wonderful Mother’s Day.

For Her.
Bobbi


May 11, 2009

Happy Birthday to Bailynn!!! Happy Birthday to Bailynn!!!! Happy Birthday – Happy Birthday – HappyBirthday to Bailynn!!!!
I truly can’t believe she is 9 today. Where has all the time went? Funny enough she is still sound asleep in her bed, and it being her Birthday and all, I am going to let her sleep as long as she wants!!!
We aren’t doing anything grand today. Bob is going to pick up her cake this morning and then we are getting Isobel out of School a half day so that we can celebrate (at home) before Bob heads out for work this afternoon. Then the twins have their 15 month appointments at 4:00 and I will be running them out to Newburgh for that. It will be a fun day without a bunch of extra excitement. Bailynn will be pleased!!!
I hope everyone’s weekend was great. Bob finally got to mow our “forest” of a front yard, but it started raining again when he made it to the back. Ah, rain, will it ever end!!
Have a great Bailynn’s Birthday.
For Her.
Bobbi

* For those that have asked what she would like for her Birthday, she loves size 5 Pampers Baby Dry Diapers =), and gift cards to Target or just $$ (she is in need of some new clothes!!), please don’t feel like you have to get her anything, she isn’t that kind of girl =). ~ Thanks


May 11, 2009

Happy Birthday to Bailynn!!! Happy Birthday to Bailynn!!!! Happy Birthday – Happy Birthday – HappyBirthday to Bailynn!!!!
I truly can’t believe she is 9 today. Where as all the time went? Funny enough she is still sound asleep in her bed, and it being her Birthday and all, I am going to let her sleep as long as she wants!!!
We aren’t doing anything grand today. Bob is going to pick up her cake this morning and then we are getting Isobel out of School a half day so that we can celebrate (at home) before Bob heads out for work this afternoon. Than the twins have their 15 month appointments at 4:00 and I will be running them out to Newburgh for that. It will be a fun day without a bunch of extra excitement. Bailynn will be pleased!!!
I hope everyone’s weekend was grand. Bob finally got to mow our “forest” of a front yard, but it started raining again when he made it to the back. Ah, rain, will it ever end!!
Have a great Bailynn’s Birthday.
For Her.
Bobbi

* For those that have asked what she would like for her Birthday, she loves size 5 Pampers Baby Dry Diapers =), and gift cards to Target or just $$ (she is in need of some new clothes!!), please don’t feel like you have to get her anything, she isn’t that kind of girl =). ~ Thanks


May 14, 2009

Well, we finally got to the allergist today for Naomi and the results were as I feared. Naomi has allergies to Tree Nuts and pretty significant. She had some skin testing done and blood drawn. We go back on May 29 for more tests and in the meantime she was prescribed and Epipen and we are suppose to look into going to Food Allergy Education Classes, if everything else wasn’t enough =). We are holding together and moving forward in finding out how to make our home 100% Tree Nut free and then we will have to protect her from everyone else’s love of giving food!!
On another note, Bailynn’s referral did go through the Rehab Center, but because she hasn’t been in so long she is having to be re-evaluated. This slows down her return, but we will get there. Keep praying for our insurance to behave and to approve the testing for the other girls. I am trying really hard to be patient and nice with them. It takes all I got!!
Like always, never dull here.
For Her.
Bobbi


May 18, 2009

Well, we had a great weekend. We traveled to Tennessee to visit with my parents and brothers. We hit Opry Mills and the Zoo and it was so nice to see my family. The trip down and back is always fun with us crammed in “Rocket” all four dogs whining, but we made it. Today I am trying to catch up on Laundry and my washing machine has decided to break. It now requires me to use our vacuum to drain the water out so it can continue on with the process. I am going to have to call Sears tomorrow and find out if someone can come out and diagnose the problem. I have got through only two loads today because of all the trouble. On top of that today was “Field Day” at Isobel’s school and I went and hung out with her and her class as they had outside activities. They did relay races and drew with sidewalk chalk, it was a very nice day to be outside.

The spot that concerns us on her back, with the rods, is not looking better. The skin around it is so red with irritation. I hate looking at it for fear that the next time I look I will see metal again like in the fall. I actually had a nightmare about it this weekend. She just needs more meat on her!!
Tomorrow Bailynn has her OT evaluation to return to therapy and on Friday she has her PT one. On Thursday she goes to see her Nephrologist (kidney doctor) here in town. She is coming to Deaconess Riley, and I don’t really know what to expect because we haven’t had a renal ultrasound in a while.
The week is jam packed with stuff and Isobel’s last day of school is Friday. I can’t believe her kindergarten year is over. It seems like yesterday and at the same time like she has been in kindergarten for the longest time (because of all the things with Bailynn). She will be in college before I blink.
Okay, I have to put Bailynn to bed. She is clawing my arm and squawking at me =). Who says she can’t communicate!!!????!!! I hope everyone else’s weekend was great also, with less dogs in a “Rocket” !!
Monday down, the rest of the week to go!
For Her.
Bobbi


May 20, 2009

Last night we figured out what was wrong with the washing machine (the water pump has gone out) and I ordered the part online. It should be here tomorrow and I will be off and washing again.

Bailynn’s back looks worse today. I am taking her to the pediatrician tomorrow at 9:10 AM to have her look at it. The skin is breaking down and now there is a scab over the area where the rods are bulging. I am hoping her doctor has some good ideas as to how to stabilize the skin and irritation. The bulge is bigger and I had Bailynn wear her neck brace all day today.

Isobel hit her head on the playground today at school and has a bruise on the top of her head. I was on the phone with the doctors office about her tonight and we are just suppose to watch her and check on her throughout the night. She was so afraid I was going to take her to the Doctor, but I assured her that if she needed to go they would do nothing but help…. she didn’t believe me. She is asleep now and I am hoping that tomorrow she will feel better.

On top of taking Bailynn to her pediatrician she is also seeing her Nephrologist. The good thing is they are in the same complex so I won’t have to drive to 2 different locations.
Okay, so washer down and doctor appointments to go, oh and last day of School Friday.
By the way Isobel’s class won it all with the Box Tops!!!!! The Biggest Thanks to Everyone who sent her Box Tops!!! They got a Pizza a Ice Cream Party this week. She was thrilled!!! Please continue to collect them over the summer for her if you can. Now that she has the taste of victory, she can’t go back!!! Thanks again to everyone!!!

May everyone be resting well tonight. Please continue to pray for Bailynn’s back. I am just so terrified that we are heading down the wrong path again. I think after all the surgeries the last few months that I am a little jumpy. I just need the skin to stay intact, her body to put on some much needed weight, and the rods to stay below the skin where they belong!!!!

For Her Bobbi

*Picture of Arwyn and Bailynn at Nashville’s Zoo this past weekend.


May 21, 2009

We had a long morning of Doctors, but all in all it went well. Bailynn now has a “doughnut” shaped bandage on her back to create some relief from friction on the bulging rods!! The pediatricians office ended up using heal pads (like for shoes) and some bandaging to create the cushion. Seems funny, but it works. Bailynn did great with being messed with so much.

We also saw her Nephrologist (and surprisingly she didn’t cancel like she normally does!). Bailynn’s kidney’s have yet again more tubers in them, but her function still looks “normal” and they are growing at an expected rate. We don’t have to see the doctor again for a whole year!!! What will we do with ourselves? Now I am looking forward to Isobel’s last day of school tomorrow and she really believe 1st grade it going to pick right up on Monday. It is almost like she doesn’t need the summer. She is ready for more and more and more. I hope the fire doesn’t die. She loves to learn. She starts back to Speech Therapy on June 4th (I will have to keep an eye on our insurance!!) and will continue throughout the summer, God willing. I want to make sure she gets that continual stimulation.

This weekend we are laying low. We have promised the girls to blow up the “baby” pool and Bob is going to work on rescuing our backyard (pray for him, it is BAD). Bob’s birthday is next week on Thursday and our ten year wedding anniversary is on Friday!!! We also take Naomi back to the Allergist on Friday =(.

Well that is it for me for now. I need some rest to recover from a long day and then it will just start all over again tomorrow. Bailynn has OT (her eval went great on Tuesday) and PT evaluation in the morning. Yippee. With Love for All. For Her.
Bobbi


May 26, 2009

I took Bailynn’s bandage off her back on Sunday morning to look at the skin, it looks much better. There was very little red, so the key is keeping pressure off the location. Everything causes trouble with this. One… she can’t lay on her back because she is laying directly on it and two… she looks bad on her side because she starts to try to curve. Her side still seems like the best option for now despite the curving. We are trying to keep her upright as much as possible and that means wearing her neck brace tons more (which she just loves, not.). Her appetite has been superb all weekend and I know she is going to love the new routine of not having to get up and take Isobel to school. Isobel, however, is not so pumped up about this plan. She wanted to go to school yesterday and was picking out her outfit to go today. I have tried to tell her that she is on “summer vacation” but she wants to know where we are going. A vacation to nowhere seems lack luster. She would rather be in school. Bailynn’s Therapy and Therapy eval went well on Friday. She starts back up to regular pool sessions of PT on this coming Friday (Our Wedding anniversary). Naomi also goes back to the Allergist on Friday morning (just so everyone knows, there are nuts in so much stuff!!!). It will no doubt be a long day.

We are still awaiting word from our Insurance as to whether or not the test the other girls need will be covered, or if a war will ensue.
I hope everyone had a great Memorial Day Weekend. We broke out our Slip N Slide and had some great laughs with the girls and Leahanna. The water was FREEZING and there was no sunshine to counter it, but it was great. Isobel and Arwyn were a hoot. Bailynn happily watched a video while were crazy and the twins were asleep (they got the good end of the deal). After many bug bites we retired the overused and slightly damaged Slip N Side, for another day. It was great fun and Bob is now planning a large tarp and hose with holes version to pump up the action. Pray for our saftey =).

For Her. Bobbi


May 29, 2009

Well, after many attempts to update, I am hoping this one works.
Yesterday was Bob’s Birthday and the girls and I baked him a cake. We had lots of fun hanging out and thanks to Bob’s mom and dad for Pizza. Today is our 10 year wedding anniversary and we spent the morning in the Allergist office with Naomi. There are a lot of possibilities of more allergies and she had more labs drawn. We go back in two more weeks and I am hoping that we find no more allergens. The nut allergies all came back positive in her blood so it is for certain that she has allergies. The peanut did come out negative, but the doctor still wants her to avoid them. I love peanut butter, this task will be hard…..so so hard. Anyway we will make it we always do.
Bailynn got to get back in the pool today at the Rehab Center and she was in Heaven!! She smiled so much and screamed a little =). She also got to practice trying to give herself a drink with her own sippy cup and did surprisingly well. She is just so spoiled!!! Really Really Spoiled.
Okay, so tonight we are sitting at home again and having some yummy pot roast (one of my favorites). Tomorrow we are going to take the girls to go see “UP” and they are so excited (we have free tickets). We are trying so hard to make fun of small things.
Another day, we are making it. Bailynn still has no surgery on the horizon and each day looks a little brighter than the last. She is still eating really well, but I know she is just not going to chunk up like they want her too.
Her room still has the smell of a hospital and is stocked with syringes, alcohol, cathes, and many more staples of a hospital. It is odd to me to see all the things scattered around her like absurd toys. The other girl’s rooms look so “normal” in some sense compared to hers. They don’t have a stuffed bear emerging from a back brace or a baggy full of tap hanging from their doors. They don’t have baskets full of caps, gloves, or saline. There are no bandages, iodine swabs, or PICC Line stabilizers. There are families out there that don’t have one of these things lying around in their home. There are no wheelchairs, standers, our shower chairs. How strange. My normal is considered abnormal. My regular everyday is so off step to others and yet so natural to me. A seizure to us is an everyday occurrence and yet a frightening event to someone on the outside. I have to say I am happier with my oddities and happier with my abnormalities. I love who I get to be and who God has let me become. What a glories day. Married 10 years with five beautiful perfect little girls, four crazy dogs, and one extraordinary husband, I am so Blessed.
I hope everyone has a glorious weekend. Can you believe it is Friday again!?!?! I can’t. Enjoy.
God Bless. For Her.
Bobbi


June 1, 2009

The weekend went well. Saturday was a bit of an adventure, but we made it through and got to take the girls to go see “UP.” It was so good. I recommend it to everyone. I totally cried a few times. Who doesn’t love Disney? Leahanna and I have ended up with a cold and have been suffering the last couple of days.
The family hung out by the baby pool and had races down two slip-n-slides yesterday (we are all a lovely rose color). It was so much fun.

Today we are trying to recover from too much sun yesterday and a cold. We don’t have anything till the end of the week. Isobel starts back to speech therapy on Thursday, but we still have no approval from Insurance for further testing. They claim that they “lost” the first attempt at getting approvals (um, yah right). Isobel has been cracking me up with her “need” to go to school. She keeps reminding me that she is in First Grade now. I try to not laugh when reminding her she has all the way till August. She is wishing away her summer!! Funny. Bailynn has therapy again on Friday and her back is looking much better. She wore her neck brace a lot today. I hope everyone else is having a good begining of the week. Summer is here.

For Her. Bobbi

PS: Naomi’s blood work from Friday were negative for Milk and Eggs, that is really good. We still go back on June 12 and get more testing. I think they are going to test her for shell fish?!?!? Anyway, good news.


June 3, 2009

The week is dragging on. For part of the day yesterday I thought is was Wednesday…nope. Bob has joined the “not feeling well” crowd and even went into work a little late yesterday to try and compose himself a bit after a very long night. Last night wasn’t a whole lot better, but I believe he would rather come home at a decent time. Today Isobel has swimming lessons and other than that it is another day of nothingness. I believe tomorrow will feel more eventful. Isobel has Speech at 9:00 am out at the Rehab Center and than Bailynn has Therapy at 9:15 on Friday (see I remembered Amy =)!! ). That is three days in a row out to the Rehab Center.

I am looking forward to the weekend. We have some movie tickets that Bob got from work a few months ago that we are going to use them to go see the new Night at the Museum movie. The girls loved the first one and are so excited to go see the new one.
I gave Bailynn a shower last night and examined the spot on her back with the bulging. Unfortunately no change in body mass. She is still as skinny as ever and I swear you can see every outlining detail to the rods through her skin. Her skin delicately lays over the form. Right now Bailynn is enjoying a Barbie movie in her room and rattling her favorite toys. She is oblivious to the stress that the potential of the rods bursting through has caused Bob or myself. She happily goes about her daily routine glad to not be sitting in a hospital.

I need to make her a new dermatology appointment. The “tubers” on her face have gotten dramatically worse over the last few months and I know if we don’t find a way to deal with them now; when her body starts shooting off hormones we will be too late in finding a way to get rid of them. It is just painful to see the route in which they take to try and remove them. It is so crude trying to burn them off with lasers or shear them off with razors. Either way ouch!!!

Isobel and Arwyn are loving playing with each other everyday. This morning they are playing Disney Princesses on the Wii. It is so much fun to listen to their little conversations that are so serious about such silly things. They have their moments of fighting, but over all they get along very very well.
Lila and Naomi are inseparable as always. Naomi is a blabber box and with effort Lila will join in. They both love music and dancing, but to big beat music basically. Their favorite movie is Madagascar 2 because of the music. They are both cruising around the furniture and behind push toys, but still won’t take the brave move to let go. Lila is the closest. She will stand in the middle of the floor all on her own and then plop down to her butt and crawl on. We have been trying really hard to entice them to go independent to no avail. I have told them that a great birthday present for mommy next week would be their first free steps. I am not holding me breath =).
For Her.
Bobbi


June 9, 2009

Bailynn has had a good last couple of days. She has had few seizures (only one really hard one that I have seen) and been generally happy. The skin over her bulging rod has completely healed and we continue to keep a pillow behind her in her wheelchair and place in a comfortable way with no extra pressure on the area. She is getting use to sitting more again and eating really well considering. She was in a great mood for most of the weekend, but tires easily when we have her out to long, so do I.

My 30th Birthday is Thursday, I remember when I thought 30 was so old, ha right. Every age looks tons younger the closer you get to it. I think Bob may take the day off and our family may head to Holiday World. I am excited. I still wish the twins would get up and walk. Lila is the silliest about it. She directs us and pulls with little to no need for support, but the moment you remove her “needed” fingers she drops to her butt. She is such a little stinker. Naomi is doing much better also, she has finally discovered that God gave her knees and that they bend =).
Today we are running to the post office to mail a broken toy back to fisher-price and get it replaced. Then off to Wal-mart for Silk and OJ, then home. Isobel and Arwyn insisted on wearing dresses for our few errands and true to form are all gussied up. I love them, of course if I looked that cute I would sport it too.
Anyway, I hope everyone’s Tuesday goes well. Same old things here.
Keep praying for our Insurance mess. Things have to work out and I am trying to be patient waiting for it. Alright, again have a great day.
For Her
Bobbi


June 12, 2009

Okay, my family totally loves Holiday World and we went there yesterday, June 11, to celebrate my 30th Birthday. I have to say I was so disappointed in the parks lack of consideration for Handicap individuals. In Splash N Safari there is no respectable way to change Bailynn. There are no large benches or tables of any sort inside the water park. It came to placing her on a towel on the hard concrete ground to get her swimsuit on her. She is 9, what happens when she is a teen or adult. Do they expect me to change her in public again? The “#1 place for family fun,” but it is not the #1 place for Handicap awareness!! I have to say it was such a chore to even take her on the rides that the only ride she got to do was the Turkey Shooting ride. I cannot express my full disappointment and the utter disregard for a large population of people. Bailynn has the same rights that everyone else does and should be provided accommodations. Please help me make Holiday World understand. We need people to take a stand and make the voice of those who cannot express themselves heard. Help me make Holiday World the #1 place for the Handicap. Thanks. …

Other than that the day was great. Isobel rode the Voyage rollercoaster and the new Pilgrims Plunge. We all had tons of fun splashing in the water and enjoyed the rain. The park wasn’t very crowded and Bailynn did great even though she couldn’t do a lot.

I will have you know that I asked them about their ingredient contents in their food at the park also, for Naomi, and their staff is not educated in allergy awareness and the boy didn’t really want to go and ask someone. I was really taken back, but in the end we worked it all out.

Today everyone is tuckered out, but excited that Uncle Jacob, Grandma, and Grandpa are coming in this weekend. I wish my brother Ben was coming too. It would be a true party then =).

Anyway, love to all and hope your week has gone well.

For Her.

Bobbi

P.S. Peggy and The “Boost” Fairies. We are in need of more (we just now are down to about 12). Tell me what I need to do to get some more large cases of the Equate! Thanks so much for all the support so far. I know Bailynn appreciates it so much (and her mommy and daddy too).


June 15, 2009

Ever have one of those days you would like to rewind and start again with the knowledge of what was to come? We all do right? Today was one of those days. I am so tired.
Lila was evaluated for PT because of her lack of courage. She is so close to walking it is pitiful. She qualifies, but we are going to wait a few more weeks and see if she will just do it on her own. Naomi continues to have PT once a week and is doing so much better. She has finally discovered that she has knees and transitions from sit to stand and stand to sit with some grace. Though I feel Lila could really benefit from this extra help, right now I just think it is any day till her first steps. Bailynn had a few seizures today and they were really hard. She even cried when she had one around 1:00 this afternoon. She acted like she was going to throw up. That is the worst seizure I have seen her have in a while. We were informed many years ago that seizures will harden and increase when puberty hits. I fear them, but am ready for the storm. Bailynn goes back to Riley on July 13 and 14 for Ophthalmology, Urology, and Developmental Pediatrics. It feels like we haven’t been there is so long. This is the longest spread between trips in Bailynn History!

Anyway, it has been a long day and I am ready for our “nothing” filled tomorrow. The girls have been nothing but good and they deserve a day to lay low. Well, I just got done working out
and I am off to bed. I hope everyone else’s week is going well. Best to all, I will write again soon.
For Her.
Bobbi

June 17, 2009

Lila took 5 steps on her own today. Then gave up =).


June 19, 2009

TGIF. I am so glad Friday has come and the weekend is upon us. The week felt as if it would never end.
We have been to the Rehab Center 3 times this week and today Bailynn was so grouchy. She is still not sleeping good, having bad seizures, and just not being herself. Yesterday we ran to Wal-mart and she seemed to be happier until we were home and settled and she decided “grump” was her middle name. At therapy today she did really well. She held her cup and even attempted to place it back in her mouth after pulling it out. She did good trying to bite a BREAKFAST bar, but screamed and complained other than that.

Her PT even told me today that she just doesn’t know what she is doing for Bailynn anymore. Bailynn just gets so upset when she is making her do stuff that she tenses up and stops preforming well. Then it takes extra time to get her relaxed enough to continue. It is such a mess. My heart breaks knowing that there is little else to be done to help her continue to function at a higher level. Her PT just really wants us to talk to the Orthopedic Surgeon that has done Bailynn’s Surgeries and find out what he expects and what to do. Bailynn has had physical therapy for so long that I don’t even know what it would be like to not. I knew that eventually the strain of taking her there would lead me to the conclusion of discontinuing, but not at 9 years old. I know that Bailynn will never get out of her chair and walk across the room, but I have to admit that therapy still gives me a litttle glimmer of hope. I know Bailynn’s chair is perfect for her and her life, but I can’t sit here and lie and say I don’t wish for those things. I wish everyday to have her crawl out of bed and stumble to me. I wish for her everyday to say hello to me. I wish everyday that she is progressing to the best her she can be. I know God made her the way she was suppose to be and though her legs don’t take steps and her mouth forms no words, her life is the most important form of education and love. Her silence speaks volumes and her wheelchair shows strength in her difference. Her world has given us such a lovely friends and opportunities.

This week has just been emotional exhausting and therefore the possibility of an end to PT has come as a shock and a bit disappointing. We will figure out what is best for Bailynn though….We so need a pool so we can do therapy with her here at home. I just wish there was more I could do with her here. There is so little. Just keep praying for my Bailynn. I love her so much and just want the best for her. I know her PT is thinking the same thing and she just wants to do what Bailynn needs and can tolerate.

Lila took about 4 steps to me this morning. She hasn’t since. Naomi is still to scared. She is the funniest about caution. I will look forward to a boring and uneventful weekend =).
Love to all
For Her…

Bobbi


June 22, 2009

Our insurance denied Arwyn and Lila claiming we don’t have enough to go by. Have I mentioned how much I despise my insurance? I do, but the fight just starts here it doesn’t end.
The summer has came in with a heat wave and none of the girls are very interested in being hot…ditto. I have to say that a nice cool pool in the backyard would be nice, maybe next summer. Right now we are getting by day to day just like most.

Bailynn has had a really rough weekend and week. She has not been sleeping well. Her eyes have big dark rings under them and she screams for 90% of the night. We get up and check on her and she is “fine” in a sense that she is not hurt or needing consoling. She just has a need to scream at the top of her lungs for most of the night. She wakes up the house and though she is not trying to disturb the peace it is definitely taking a toll on our whole family.

On a happy note, I find Lila standing in the middle of the room, 6 inches from the couch, and she has been taking steps (4-5) randomly. She is so close…any day now. I think she just needs a big enough distraction to make her forget her fears. Food was the key today, popcorn. Grandpa would be proud.

Tomorrow we head to the allergist again and Naomi gets more tests. She is still breaking out occasionally, but is doing much better with her diet being so carefully watched.

Hope everyone’s week is off to a good start. For her.
Bobbi


June 24, 2009

Bailynn continues to scream, continues to not sleep, and I will be calling the pediatrician in the morning. I have a couple theories. Some being 3 loose teeth or a bladder infection. I am very unsure and I know once we find out what is going on she will sleep again. She also continues to have really hard seizures. I am also going to call her neurologist in the morning and let them know what is going on. The heat may also be a factor. Bailynn has so many more seizures when overheated and it is really horrible right now. Okay, so I have a lot of theories and something has to pan out. Please pray tomorrow also, Bob is going to call her Medicaid Case Manager and see where she is on the list after 8 years. If she could get Medicaid Waiver her diapers and medical supplies would be better provided for and they would pick up the extra funds our insurance does not cover. I am hoping that she is close. We need some financial relief.

I will let everyone know how tonight goes tomorrow. Thanks for all the prayers.
For Her.
Bobbi


June 27, 2009

Well, I gave Bailynn an enema the other night hoping that it would help her comfort level. She continues to scream like a crazy girl. She is still tired and I have felt bad today as well as exhausted. She is doing better through the day it is mainly bed time that interferes with peace in the home. Bailynn also is on a seizure kick and her teeth are incredibly loose. Bob and I gave her a dose of antibiotic today to ensure that her body fights any infection that the tooth loss could create. I fear her swallowing them, but could not bring myself to pull them today. I will try again tomorrow.

She doesn’t seem to have a UTI or any other form of ailment, she just wants to be heard. Again, it is HOT and she hates HOT.
Bob and I need sleep as well as I would like to be feeling better, but I would take Bailynn not screaming over all of it.

This morning she did sleep in a bit due to her staying up half the night. I even thought about going and starting a movie for her last night in an attempt to entertain her. I just feel if I do that I will create a little midnight moviewatching monster :). Maybe the rain will come tonight and we will get a slight relief from all the humidity (probably not).

Other than all that, things are well. Really. The girls are still enjoying their summer vacation together and we are having lots of fun everyday. Isobel and Arwyn were worn out today after playing outside in their baby pool while the twins napped and Bailynn enjoyed the a/c. They love their pool.

Also an update on our insurance denial: The insurance wants tests proving that the girls require tests……hum?!?! Isn’t that what we asked for….tests that is. So we need to test them to approve the tests. That makes perfect sense. Right? Still they have only denied Lila and Arwyn. The pediatrician sent 36 pages of medical reference on Bailynn’s case to the insurance to try and further our case. AHHHHHH! These people stress me out so much. I have notes all over the place for things I need to take care of with our evil insurance company. The nurse at the doctor’s office even said that our insurance is the worst she has seen when it comes to approval for care and taking care of special needs children, lovely. I knew they were awful, but it is hard to hear from a medical professional how much trouble they have with them also.

We also did contact Medicaid Waiver to see where Bailynn stands. They are suppose to contact me sometime this next week and let me know. We so need some much needed relief in the diaper purchasing department. Providing diapers for 3 people is such a financial strain. Right now I resort to hunting for coupons and praying they last longer. Lila and Naomi will have to be potty trained as soon as they are old enough!! Okay, maybe the goverment will come through, wait… I won’t hold my breath!!

Thanks to all for the prayers and continued support. Days go by and I know how much everyone out there loves to hear about how my Bailynn is doing. Thanks for continuing to care. I know Bailynn is a superstar in her own right and an inspiration to so many.
For Her.

Bobbi


Bailynn’s Caringbridge was a year old yesterday. I can’t believe it has been a whole year. Thanks to all for sticking in with us through all the hard times and good times. This has been such a wonderful way for me to express myself and to inform everyone on my Bailynn. Bob and I couldn’t ask for better friends and family. It is such a Blessing to see all the hits on the site everyday and know that so many people out there want to know how Bailynn is. She is my Angel and God has given her such an amazing audience.


July 1, 2009

Bailynn is still struggling with sleeping and today the twins were so grouchy. Nap time was a gift and a joy and after the girls all emerged from their beds things were much better. They all were ready to hit the bed tonight as well and right now Bailynn is watching TV with Bob, Leahanna, and myself in an attempt to wear her down. Last night Bailynn had a really bad seizure that made her gasp for air and thrash hard for too long. I have to say that I will be very eager to see her Neurologist in August, one more month. Tomorrow I am taking a urine sample to the Hospital for analysis, not only because of recent events but also because Bailynn is having a Uro- Dynamic on the thirteenth of July (a test to check her bladder). She has had a few of them in the past and needless to say she hates them. Yea!! Okay, that is not the only doctor we get to see, we are also seeing the Ophthalmologist and Developmental Pediatrician. Leahanna is going with me because Bob has to work (boo), but she has never been and I am really looking forward to sharing Riley with her.

Please continue to pray for our families sleep. I know that the answer is there, it is just waiting for us to see it. I just hope it is not medication.

We are heading to Tennessee for the weekend and I hope everyone else has a great fourth of July, enjoy the boom booms =). I am excited to spend sometime with my family.
I hope we get the results of the urine test by Friday afternoon, I am pretty sure she doesn’t have a UTI. This is just something they need done before they can do the test.
Again, have a great weekend and I will update again soon.
For Her, Always.
Bobbi


July 6, 2009

We had a great weekend. Bailynn is still having lots of seizures, and her Neurologist cancelled our August appointment…AHHHHHH!!! I am working on getting Bailynn a new one right now. Stress. Anyway, I will write more later. I need to go cook dinner =).
For Her.

Bobbi


July 7, 2009

I have talked to Bailynn’s Pediatrician today and she is going to request lab levels of Bailynn’s seizure medications. This is an attempt to see why she may be not sleeping and having such bad seizures. I am glad we are going this route and I am still trying to get a new appointment scheduled for soon. The Riley scheduling ladies keep telling me the next appointment is not until late October for Neurology. That will not work!

My favorite Nurse at the Pediatrician’s office is leaving…she is so helpful and I am sad to lose her. I have not got to know the new phone Nurse very well; I am trying to build that relationship. I have a lot of medical needs for Miss Bailynn and I know I have to have someone on my side to fight for her. Please pray this lady will be as helpful as the last. A turning of power is always hard when one person knows you so well. I appreciate the current Nurse’s knowledge of the situation.

Okay, other than that we head to Indy on Monday and have to stay in a hotel over night. We are actually driving a bit away from Riley in an attempt to get a better priced hotel (it is the one we stay at for her surgeries at St. Vincent’s). We just can’t afford all this, but we are trying very hard to keep our heads above water. I have applied for a few jobs and I am still awaiting confirmation as to whether or not I am even being considered. I just don’t have a very flexible schedule with the girls and I am hoping that there is something out there that is perfect for me. One particular is a writing job.

A Medicaid Waiver lady come out to the house last week and she was very friendly….she claims that we may not qualify…why?? I don’t’ know, but the diaper relief would be nice. I have called Pampers begging for coupons, but they are not helpful. Pampers are the only diapers that fit my skinny minnie’s booty and I we have tried to change with disastrous results. We are lucky that she still wears a size 5 also, so it is easy to find them anywhere. I know when she gets larger it will be harder to find diapers in her size. I am hoping the Medicaid lady is wrong and that everything will clear fine. It will be a while before we know….how long I don’t know.
My patience is being tried again.

Here is hoping we have a good week and the Bailynn gets some much needed rest. The relief from the heat last week was nice, but not long lasting. Isobel’s is ready to return to school and even wrote her kindergarten teacher a letter today telling her how

much she misses her =(. I think she also knows that once school resumes that we are on our way to Christmas and then to Disney. I am just as eager for a break. I will update with lab results later.

Thanks for the continued Prayers and Love.

For Her.

Bobbi


July 9, 2009

Psalm 40:1

I waited patiently for the LORD; he turned to me and heard my cry.

Bailynn has a UTI. She had her thirdpill of antibiotic this afternoon with her lunch and is sleeping!!!! Sweet sleep. The urologist nurse called yesterday and said ecoli was growing in Bailynn’s urine (ewww) and immediately called in a prescription. Bailynn has some tests on Monday on her bladder and it is very important that we get it cleared up before then.
Also, on a lighter note, Lila started walking last night! She did laps around her bedroom (not just one or two steps, laps!!!). She was so proud of herself and we were all clapping and praising her. The twins were 17 months old yesterday and as much as everyone wants to believe it will be more work when they walk….I disagree. I already have Bailynn and wish everyday for two or three steps, I take joy in Lila’s accomplishments and may she get into many things!!! Naomi is not far behind. She will walk next to you holding one hand, but she has so much fear of the unknown. She is just a cautious little lady. I am sure now that Lila has taken the leap that Naomi will follow suit shortly.
Today Isobel had speech, our insurance has denied it again after contacting the wrong pediatrition. These people can get nothing right. I have had to call and call and call to try to fix the latest issue. We have not used up all our sessions for the year yet so I am hoping this can all be cleared up before long.
All in all yesterday and today have shown a dramatic turn in enthusiasm and rest. I felt horrible last night, but the relief in seeing Lila walk across and around the room filled me with blessings like no other. I hope everyone else’s day is going as brightly as ours and may the antibiotics do the trick for Miss Bailynn’s anti-sleep attitude.
Thanks and Love to all
For Her.
Bobbi

Psalm 37:7-9

Be still in the presence of the Lord, and wait patiently for him to act. Don’t worry about evil people who prosper or fret about their wicked schemes. Stop being angry! Turn from your rage! Do not lose your temper—it only leads to harm. For the wicked will be destroyed, but those who trust in the Lord will possess the land

The marvel of all history is the patience with which men and women submit to burdens unnecessarily laid upon them by their governments.~George Washington


July 14, 2009

We had a long two days in Indy. Bailynn now has to be cathed 3 times a day because she is still not fully emptying her bladder. She is just getting too many UTIs and her Urologist is not happy with it. She is also holding less than half the urine of what a typical (I stress typical) child of nine should be holding in her bladder. This will be fine, but something else to have to do everyday. She has had 7 surgeries on her back over the last year and a half….I wonder why her bladder isn’t working – hmmmm?! Urology took 4 hours on Monday and then we went to Ophthalmology and her eyes still look great (free and clear of Tubers). Today we saw Developmental Peds and had blood work done for Neurology. She did great and her weight gain is good (yay!!). I discussed my concerns about increased seizures and we are working on a solution.

We are happily home and all the girls are in their own beds. Tomorrow I have to make some phone calls and oh I almost forgot the good news. All of Bailynn’s Doctors that we saw over the last two days are going to write The Devil (aka: Anthem) and explain why we need the other children tested!!! I am so happy for the help. I just want everyone’s extra hard prayers on those letters :). May they do the trick (probably not Anthem being the Devil and all!!).

Whew. What a start to the week. Is it Friday yet? I look forward to sleep and wish everyone a great night. For Her.
Bobbi


July 20, 2009

Though the weekend is over, it was a great way to start this new week. The weather has been perfect and we even got outside for a bit on Saturday.
As for Bailynn, cathing is not going to well. She screams so loud and cries and does everything in her power to not have it done. She has even thrown up on me twice because she is so upset about it. The problem is that the cathing is helping to protect her kidneys and bladder. I have told her over and over that we just have to do it and she looks at me like “uh, no you don’t!!”

Bailynn’s Neurologist has increased her medications and we are stepping up over a four week period to a new dose. We then go and see her again in October on the 19th. We also head to Indy again in just a few weeks on August 2, 3, and 4. Bailynn has a slew of appointments for those days and Naomi has two. Naomi is getting her heart looked at again and it is believed that Naomi could be missing a front tooth (completely missing!!). She is going to get some x-rays of her mouth at Riley Dental while we are there to check and see (she just wants drama like her big sis). So that is what is going on medically. Now for some wonderful Bailynn developmental news after nine years of life, Bailynn last week starting holding her own Sippy cup and giving herself the drink (every time). She holds the cup, tips it up, and pours it in :). I can’t tell you how proud Bob and I are. New developments like this give us such big hope and bigger blessings!!! Nine years and this little lady learned a new trick!!! The only difference is a change in cup (due to a leaking cup). The cup was one of the twin’s old ones and is made by Gerber. It has a triangular like shape and she can grip it well. Whether or not that is a contributing factor, I can only speculate. All I know is she is doing it all on her own and I beam with joy.

Another bit of good news is that I got a job. I got a job with the Examiner.com/Indianapolis as a columnist writing about parenting and early childhood development. I basically can write about anything (to do with kids). I have to write 4-6 articles a week and I get paid per hit on my article. I am so excited and ready to share Bailynn on a National level!!! I will be posting my link when they get it all up and running. I just sent off my photo and a short biography yesterday and now they are running a background check. Did I say I am so excited?!?!? All my Journalism classes are going to be put to good use.

Okay, good week right!?!?! Anyway, I hope everyone is doing well out there. We are still waiting to hear from Medicaid Waiver, I am going to call today and see if the lady knows anything yet. I will update soon.

Love to All and as Always For Her. Bobbi


July 24, 2009

Bailynn has had an okay week. She still insists that sleep is unnecessary. The cathing is going a little better. I believe she realizes now that I am not going to be stopping anytime soon. I got a huge box of supplies for cathing and I am totally frightened as to how much we are going to owe for it. There was nothing in there about whether or not our insurance would cover it!! Scary! Bailynn had therapy today and did great. She is standing very nicely in the pool again.

Lila is walking everywhere and today even picked up the pace a bit. Naomi has become more brave and will take a few steps when prompted to (about 6). It is so exciting to watch them grow.
Also, my first column is live. I am so excited!! 

I get paid per view so please go and check it out. I am so glad I found a job I can do from home to help our family and it is something I love to do. You can even subscribe for email updates just like on here when I post a new column.

I hope everyone’s weekend goes well. We are going to take the girls to see the new Ice Age movie to Celebrate mommies new job!!
Another bit of good news is Arwyn was approved for a Renal Ultrasound (aka: ultrasound of her Kidneys) This has opened the flood gate for approvals and I am so excited that after all the fighting with Anthem they are finally agreeing to let our children be tested for Tuberous Sclerosis. Thanks to everyone for all the good quality prayers towards our trouble.
The end of a good week!
For Her.
Bobbi


July 26, 2009

Bailynn is currently not sleeping. Instead she is SCREAMING!!!! She just had a really bad seizure and is attempting to wake up the whole household. I think she may achieve this.
Even with the increase of seizure medications she still continues to have longer, harder ones. It pains me to watch her body under the strain when she is thrown into such a violent act. I know this is what is preventing her from getting good rest and who could blame the girl. I rush to her when I hear her having one, but there is nothing I can do. That is the worst part..sitting there helpless. The peace in it all is her smile at the end to tell me that she is okay. Her smile melts all hearts.

She loved the Ice Age 3 movie and giggled the hardest at the silly squirrel. It made my soul full. All the girls loved it. I have to agree that it was very sweet.
Tomorrow we all start the week again and I am on the countdown to Riley. Bailynn’s appointments are a week from Monday and I will be glad to go and get them over with. She sees her Cardiologist and Neurosurgeon. Naomi is also seeing the Cardiologist and a Dentist. Another full two days at the Hospital. Don’t get too jealous ;).

Hopefully when I sign off here Bailynn will drift away to dream land and I can get some much needed sleep also. I have been up working on my next few columns. I have had over 300 hits on my article. Thanks so much to everyone.

For Her. Bobbi


July 27, 2009

No one should be shocked to read that Bailynn is still sound asleep in her bed. After staying up most the night she is now catching up on her beauty rest and the other girls and I are up and about.
If Bailynn does not wake up by 9:30 my plan is to wake her up. I just don’t want her to not want to sleep later!! She had another rough seizure and finally quieted down around 1:30 this morning.

Today cleaning is on the adgenda and the girls and I are remaining at home. I am also going to be smoothing out our Indy plans for next week and going through Isobel clothes to make sure she has adequate things for school (I can’t believe she starts back in 16 days). We went and got all of Isobel’s school supplies this weekend and it was much more fun than last year. This year she participated in picking out her supplies and her prized find was a Lightning McQueen folder with flames!! My princess gal has flowers, Tinkerbell, hearts, and Lightning McQueen. She makes me smile. I was proud that she didn’t even ask for a Hannah Montana folder or notebook. Flames, that is what draws her in :).

I am going to call Bailynn’s Neurologist today and inform her of the medication increase so far. We go up on the medication again on Wednesday. Maybe that will help?!?!
I hope everyone else’s start to their week began with more rest. Hopefully tonight will be a different story. For Her.

Bobbi


July 27, 2009

Bailynn is in bed and here is hoping she sleeps tonight. She napped for only 30 minutes today and I don’t know how she didn’t sleep longer.
She is also doing much better with her cathing sessions (as am I).

191 / 486

Now Bob and I are going to try to watch a movie we got from the Library together. Peace. For Her.
Bobbi


July 28, 2009

Bailynn slept more last night, but still not much. She screamed all through her nap today and is currently singing in her bed. Have I mentioned how much she rocks =). We went ahead and increased her medication tonight even though it wasn’t due for an increase till tomorrow. Literally she is blowing raspberries as loud as she can right now and giggling. I don’t know how the other girls sleep through it :).

Anyway, tomorrow will be here before I know it and I need to get some rest. I hope everyone has a good night and I will let you know how things are going tomorrow.
For Her.
Bobbi


July 29, 2009

Bailynn slept better again last night. She fell asleep around 12:30 this morning and slept till almost 8. She is now up and watching cartoons. She did have 2 seizures last night, but I don’t know how to make them go away. I haven’t figured that out for 9 years. Here is hoping for another decent night.
We head to Indy on Sunday for the next round of tests. I am hoping her Neurosurgeon has some ideas.

Thanks to all. For Her. Bobbi


July 30, 2009

It was a very long day today, but Bailynn was a lot happier. Last night on the other hand was not fun. Bailynn threw up and she screamed some more. I have to say she was very worn out this morning and slept in for a bit. Today she laughed and watched cartoons and then became more upset as the day drug on. After an enema and a shower she is sound asleep in her bed right now, Praise God.

Right now my big concern is that her Vagus Nerve Stimulator’s battery might be going bad. The VNS is a little machine that was implanted under her right breast muscle in September of 2003. The batteries have a pretty good life, but now with all the new seizure activity I am wondering if it could be the culprit. Here is the good news: When she has to get the VNS’s battery changed she gets to have a full body MRI, that she hasn’t had since 2003 (and she is suppose to get one every year with TS). The VNS was $13,0000 and an MRI could destroy the wiring, therefore NO MRIs. Okay, Bad News: To change the battery means yet another surgery, time in the hospital, Bailynn ouchy and grouchy, and risk of infection with taking the equipment out. Not only are they taking it out, but leaving it out for the period of time it takes to run the MRI scans and then placing it back in. So, we have known this was going to happen and though I am not sure if this is the issue or not, I know it could be. We see Bailynn most amazing Neurosurgeon on Tuesday and maybe she can shed some light and get to the bottom of this. The other thing that Bailynn’s Urologist fears is that her spinal cord is tethered again (nerves bunched up that shouldn’t be). Please Pray extra hard Monday and Tuesday. May we find answer and may they be as free from pain as possible.

I know Bailynn needs a MRI. Maybe this is God’s way of saying she needs one right now. We will see. For Her.
Bobbi


August 2, 2009

We are in Indy with Bailynn and the all the other ladies at a hotel for tonight and tomorrow night (thank you Priceline). She is wetting her diapers so much now that she is leaking through things constantly. I wonder if the cathing and new bladder medication her Urologist put her on are not “helping.” I will try to contact them tomorrow while we are at the hospital.

Right now all the girls are enjoying good cable with the pleasures of the Disney Channel (a true luxury to them). Tomorrow we are waking up and taking them all to the Children’s Museum before we hit the hospital for the rest of the day.
Pray we get some sleep. Bailynn is not a great person to share a room with, but we all still love her :).
Then we have more appointments on Tuesday. We are attempting to have fun and pretend this is a mini- vacation, attempting!
Hope all is well with everyone else out there. It is always so good to hear from you guys. You keep us going. I will update tomorrow evening. The hotel has free wifi and with the laptop it makes life easy to share.
Love to All, Blessing, and Always For Her.
Bobbi


August 3, 2009

No sleep. Long day. Watching Disney Channel again!!

This morning, after a long night of Bailynn not sleeping, we headed out for breakfast. Then after a bit to eat we were off for 2 hours a the Children’s Museum and then to Riley for appointments.
Bailynn saw her Pulmonologist first and he was very helpful and believes Bailynn needs to have a sleep study done (appointments are three months out). He also wants us to be prepare for a bad cold and flu season and is recommending a coughing machine and other breathing treatments after the sleep study results. He also feels the same way we do about not giving Bailynn anything to help her sleep right now for fear that she may not be breathing well at night and sleep agents may worsen that.

Then we were off to Cardiology where Bailynn had an EKG and an ECHO on her heart. Naomi had just an EKG. They both were normal. Bailynn still has a lot of Tubers in her heart, but they are still just fine and not effecting anything. She doesn’t have to go back and see her Doctor for 2 years. Naomi doesn’t ever have to go back. It is nice to know that she is free and clear.

Then we were done. We headed to the mall for dinner – took a few laps to burn off dinner and now we are back at the hotel. Isobel and Arwyn want to go swim and I am trying to muster up the energy to take them. Lila and Naomi are fried from a long day with no good nap and of course Bialynn is half asleep so that she won’t want to sleep tonight :).

Tomorrow we see her Neurosurgeon, Naomi sees the Dentist (which we can see a front tooth now, but the side of it. I think it is just growing in wrong), and Bailynn then sees her Orthopedic Surgeon at St. Vincent’s Children’s Hospital. Another long day and we just may hit the Children’s Museum again for a fee hours (milking our membership before it runs up!!).

We will get home late tomorrow night and our beds will be a beautiful sight to behold.
Pray Bailynn lets us all sleep tonight. Arwyn asked me this morning why Bailynn doesn’t sleep. I told her I didn’t know and we were working on it. Arwyn said she just thinks Bailynn is not tired (hmmmm, if only it was that simple).
For Her.
Bobbi


August 4, 2009

Tired. Even less sleep last night. Drove home. Saw my bed and jump for joy!!
Today was so long and there is so much to tell everyone. First we saw Bailynn’s Neurosurgeon, Dr. Jodi Smith, (who by the way ROCKS) and she was great. She is so disappointed in all the damage to Bailynn’s spine and back in general. There is the idea that Bailynn’s spine is teathered for the 2nd time in her life and Dr. Smith believes that even if it is that there is so much damage back there that she would do no good trying to unteather it. She does not believe that Bailynn’s tooth loss caused the infection a year ago either, but poor surgery cleanliness!! We are having Bailynn’s VNS (vagus nerve stimulator) investigated for replacement of the batteries. She will have had it 6 years this September and it is a surprise that the thing is still kicking at all! We also saw the surgeon who did all the rod/infection/repair surgeries and he said her rods look great (yay!). The hardware is still sticking up farther than anyone likes, but hey she is skinny and what are we going to do right.
Now for Naomi, uh….she has 3 front teeth. That’s right. The reason her front tooth seems to be “missing” and than appearedlast week is because there are 2 turned sideways and trying to push through together. Have you met my kids? Do they seem normal to anyone out there? Nope, not to me either 🙂 and I LOVE them!!!! Anyway, we have to wait till the teeth poke through and than the Dentist will have to pull one (he wants to wait till it comes through to avoid surgery and just pull it). Than because of positioning and the other teeth coming in around it, there will have to be some repair work :(. Okay, so Naomi is now a formal patient of Riley Dentistry. We don’t have another appointment with them till February, but if the teeth come through before then we are suppose to call. Wow, they think it could take six months! AHHH!!!
Deep breath. I am at home. Good.
Today was such a long day. We waited out storms, ran through storms, went to a cruddy display at the Children’s Museum in Indy, and sat in the car for too long. It also emotionally wares me down to be at doctors appointments back to back. I always feel like I am being overly reminded of Bailynn “problems.” I just wish there was a Doctor who wanted to hear of her marvels. I wonder what that specialty would be. A mom and dad. Her wonders do marvel me and her extreme gift of strength. I just want there to be a place on the papers in a doctor’s file to put that. “She marvels all. (and her sister has 3 front teeth)” I can see it now.
Anyway, off to bed with me. Bailynn is in her own bed tonight and I pray to God for just a few hours of continuous sleep (as do the other girls).
For Her.
Bobbi


August 5, 2009

Bailynn got approved for Medicaid Waiver today. I can’t believe it. It is a temporary Waiver, until she gets her Autism Waiver (that could take 3 more years), but I am so excited. They will pay for her diapers and possible her “boost.”
We all got some sleep last night, but everyone is still exhausted and all the girls are napping right now. I will be too as soon as I am done updating :).

My latest article is out there and live again. It is all about how wonderful Caringbridge is (because it is awesome). http://www.examiner.com/examiner/x-17822-Indianapolis-Early-Childhood-Parenting- Examiner~y2009m8d5-A-website-with-a-heart-Caringbridgeorg
Arwyn’s 4th Bday is next Tuesday (she wants a Wall-E Wii game) and Isobel starts school on Wednesday. August is flying right by and it just started. Soon it will be Christmas and I will wonder will all the time has gone!!!!

I hope everyone’s hump day is going well. I am enjoying the Blessing that Medicaid’s financial relief will bring to our family.
Thanks for all the prayers.

For Her (may my voice sing loud and strong for her) Bobbi


August 5, 2009

Our truest life is when we are in dreams awake.

Henry David Thoreau

Bailynn is SCREAMING!!!!!
*sigh*
The kid hates sleep!! Her sleep study is scheduled for my Dad’s Birthday, December 18, at 8:30 pm in Indy. I am not ready for December to be here, but here comes another thing to countdown to..so sad. This was the next time they had available and we are just going to have to wait it out.
Next, I talked to Medicaid people today and Bailynn’s final approval process could take 6-8 weeks. In this time period they are going to be attaining her medical records from all (like 14 now) of her Doctors. Ugh, this could take more than 8 weeks if the Doctors don’t do their part. Please pray for swift turnover on their parts. I know a lot of them deal with these things all the time and I am grateful for that and hoping it helps the situation.
Well, here is hoping for some sleep, but not counting on it to be good.
Oh….Naomi is walking. That’s right! Little bit finally took off. Now, she totally walks like Frankenstein, God love her, but she is walking everywhere (three front teeth and all :p ).
Okay, have a great night and Friday is almost here!!!
For Her.
Bobbi


August 7, 2009

Bailynn of course had her screaming fit last night as well. She did finally fall asleep before midnight though!! Hooray!!
She is still having so many seizures. Even with the new medication dosage. I just wish I could take them all away…. so badly.

The other girls are doing great and they are enjoying the last Friday before School starts back up. It feels like summer should not be over, but I am sure the heat will linger for us much longer than the “summer.” Isobel can’t wait for Wednesday. She knows what she wants to wear, what she wants to take for lunch, and all the things she wants to tell her new teacher :). I hope her new teacher has the strength for day one of 1st Grade! This weekend we are going to have some good family time and make sure all of Isobel’s things are ready and that Arwyn’s Bday plans are hashed out.

Other than that, I am glad Friday has arrived and now I am looking forward to the weekend.
For Her.
Bobbi


August 8, 2009

Our greatest glory consists not in never falling, but in rising every time we fall.

Oliver Goldsmith

Lots of unnecessary seizures, rods are protruding more than usual and have a bandage on them. Wishing I knew what to do. Praying we find out soon.

Please also pray for our family. It has been laid on my heart that a young man that I see frequently at the rehab center needs a home. He is 12 and in a wheelchair. He looks much like Bailynn does and smiles when I speak to him. He lives in a group home, but his grandmother does have custody of him and would have to give up her rights (she may not have the means to care for him). Crazy me wants to adopt him (yes Amy, I can hear you from here. I know I am nuts right). If he is not meant to be adopted I pray he lives a happy and well provided for life, but something in me can’t stop thinking about him. Pray for me :). If his home is meant to be with us, we need so much. Like a bigger vehicle and another bedroom. My heart feels like he belongs here. He is our missing piece. (okay, I can hear you too Dad, shhhhhhh!!! you made me love everyone too much!! my heart has too much room!)I am going to start a raise $$ to get Ryan fund :).

For Her.


August 10, 2009

NEWSLETTER July 30, 2009

Bobbi

Folks, while going over some emails in the office, I came some interesting information on the Democrats’ big health care bill, H.R. 3200, America’s Affordable Health Choices Act of 2009. While this is federal legislation and not state, the topic is of enough significance that I thought many of you would be interested in reading it. Please find below page references and direct quotes from the proposed bill.

Page 16: States that if you have insurance at the time of the bill becoming law and change, you will be required to take a similar plan. If that is not available, you will be required to take the gov option!

Page 22: Mandates audits of all employers that self-insure!
Page 29: Admission: your health care will be rationed!
Page 30: A government committee will decide what treatments and benefits you get (and, unlike an insurer,

there will be no appeals process)
Page 42: The “Health Choices Commissioner” will decide health benefits for you. You will have no choice.

None.
Page 50: All non-US citizens, illegal or not, will be provided with free healthcare services.

Page 58: Every person will be issued a National ID Healthcard.

Page 59: The federal government will have direct, real-time access to all individual bank accounts for electronic funds transfer.
Page 65: Taxpayers will subsidize all union retiree and community organizer health plans (example: SEIU, UAW and ACORN)

Page 72: All private healthcare plans must conform to government rules to participate in a Healthcare Exchange.

Page 84: All private healthcare plans must participate in the Healthcare Exchange (i.e., total government control of private plans)

Page 91: Government mandates linguistic infrastructure for services; translation: illegal aliens

Page 95: The Government will pay ACORN and Americorps to sign up individuals for Government-run Health Care plan.
Page 102: Those eligible for Medicaid will be automatically enrolled: you have no choice in the matter.
Page 124: No company can sue the government for price-fixing. No “judicial review” is permitted against the government monopoly. Put simply, private insurers will be crushed.

Page 127: The AMA sold doctors out: the government will set wages.

Page 145: An employer MUST auto-enroll employees into the government-run public plan. No alternatives. Page 126: Employers MUST pay healthcare bills for part-time employees AND their families.

Page 149: Any employer with a payroll of $400K or more, who does not offer the public option, pays an 8% tax on payroll <>BR • Page 150: Any employer with a payroll of $250K-400K or more, who does not offer the public option, pays a 2 to 6% tax on payroll

Page 167: Any individual who doesn’t’ have acceptable healthcare (according to the government) will be taxed 2.5% of income.

Page 170: Any NON-RESIDENT alien is exempt from individual taxes (Americans will pay for them).
Page 195: Officers and employees of Government Healthcare Bureaucracy will have access to ALL American financial and personal records.
Page 203: “The tax imposed under this section shall not be treated as tax.” (Yes, it really says that.)

Page 239: Bill will reduce physician services for Medicaid. Seniors and the poor most affected.” Page 241: Doctors: no matter what specialty you have, you’ll all be paid the same (thanks, AMA!) Page 253: Government sets value of doctors’ time, their professional judgment, etc.
Page 265: Government mandates and controls productivity for private healthcare industries.

Page 268: Government regulates rental and purchase of power-driven wheelchairs.

Page 272: Cancer patients: welcome to the wonderful world of rationing!
Page 280: Hospitals will be penalized for what the government deems preventable re-admissions.

Page 298: Doctors: if you treat a patient during an initial admission that results in a readmission, you will be penalized by the government.

Page 317: Doctors: you are now prohibited for owning and investing in healthcare companies!
Page 318: Prohibition on hospital expansion. Hospitals cannot expand without government approval.
Page 321: Hospital expansion hinges on “community” input: in other words, yet another payoff for ACORN. Page 335: Government mandates establishment of outcome-based measures: i.e., rationing.
Page 341: Government has authority to disqualify Medicare Advantage Plans, HMOs, etc.

Page 354: Government will restrict enrollment of SPECIAL NEEDS individual s.
Page 379: More bureaucracy: Telehealth Advisory Committee (healthcare by phone).
Page 425: More bureaucracy: Advance Care Planning Consult: Senior Citizens, assisted suicide, euthanasia?

Page 425: Government will instruct and consult regarding living wills, durable powers of attorney, etc. Mandatory. Appears to lock in estate taxes ahead of time.

Page 425: Government provides approved list of end-of-life resources, guiding you in death.
Page 427: Government mandates program that orders end-of-life treatment; government dictates how your life ends.

Page 429: Advance Care Planning Consult will be used to dictate treatment as patient’s health deteriorates. This can include an ORDER for end-of-life plans. An ORDER from the GOVERNMENT.

Page 430: Government will decide what level of treatments you may have at end-of-life. Page 469: Community-based Home Medical Services: more payoffs for ACORN.
Page 472: Payments to Community-based organizations: more payoffs for ACORN.

Page 489: Government will cover marriage and family therapy. Government intervenes in your marriage. Page 494: Government will cover mental health services: defining, creating and rationing those services.

The N.C. budget appears to be in its final stages; will have more state and budget news for you in the next newsletter.

Representative Curtis Blackwood is serving his fourth term in the N.C. House, representing District 68 (Union County). He may be reached at his Raleigh office, Room 1317 State Legislative Building, Raleigh, NC 27601, (919) 733-2406, or via email at curtis.blackwood@ncleg.net.


August 10, 2009

Bailynn screams for no reason….life moves on.

The first step in the acquisition of wisdom is silence, the second listening, the third memory, the fourth practice, the fifth teaching others.
Solomon Ibn Gabriol

Arwyn turns 4 tomorrow and all four younger girls are having Renal Ultrasounds (kidneys). Happy Birthday Arwyn, right?!?! Today Bailynn is getting her haircut and Isobel has Riding Hope. I am looking forward to having our last day of summer tomorrow celebrating Arwyn’s Bday and having Bob with us. I have let Isobel play her wii today and destroy the toy room. I have tried to prepare Arwyn for Isobel being gone again.

This week should be eventful, but hopefully not dramatic. We head to Tennessee on Saturday for a weekend of celebrations with my parents. My brother Jacob turns 20 next Tuesday on the 18th. I am excited to go see them.

I hope everyone has a great Monday…here we go again.

For Her. Bobbi


August 11, 2009

Happy Birthday!!

Today my Arwyn is four!!!
Unbelievable…Also, Happy Birthday to Alex Young. Two pretty little ladies that were born on this day 4 years ago. We are off to celebrate at Turonies with Pizza and Cupcakes!!!
We are also having the renal ultrasounds today!! Then Isobel starts school tomorrow!

For Her. Bobbi


August 12, 2009

Happy 30th Bday to Beth Young!!!!
I know I got there first. Anyway, hope your day is great.

Isobel is off at her first day of first grade and we just received a phone call from the EVSC that West Terrace Elementary had to be evacuated because the boiler overheated and the school filled with smoke. The firetrucks came and I am sure my little princess was close to tears. I am anxious to go and get her and hear the tale of the day. I will update, in her words, what happened!! Should be fun.

Other than that our day is much the same as any other. I spent the morning helping Arwyn navigate her new Wall-e wii game and cleaning, after abandonment of the Wall-e game. It is suppose to be easy and I already had to google how to beat certain levels (I am no seasoned gamer though and I am sure her Uncle would have had it beat by now!). We then watched Dora and the twins danced and laughed and gave “swiper the fox” a scowl. FUNNY!!!

Okay, Bob is home and Isobel has swimming lessons at 4:00. I wonder what she will need for tomorrow. It is amazing how much going to school can cost!

We got the results of the Renal Ultrasounds back from yesterday and every single one of them came back normal. Praise God!!! A big sigh of relief *sigh*.

Now we move on with Miss Bailynn with her hate for sleep and love for Doctors.

I am still praying about Ryan. Right now we have no $$$. None. So, I am trying to figure out the best thing to do. Times will get better right?!?! (everyone go buy a Toyota. okay, I know you can’t…but) Bob and I are looking for ways to bring in some extra cash until things do get better. We like food and Bailynn again likes Doctors. I will pray that all of America makes it through, though my doubts are great.

God’s Promises for Tough Financial Times 1. To care for you…
Matt 6:28-30

“And why worry about your clothing? Look at the lilies of the field and how they grow. They don’t work or make their clothing,yet Solomon in all his glory was not dressed as beautifully as they are.And if God cares so wonderfully for wildflowers that are here today and thrown into the fire tomorrow, he will certainly care for you. Why do you have so little faith?” (NLT)

2. To provide for you…

Matt 6:31-33

“What I’m trying to do here is to get you to relax, to not be so preoccupied with getting, so you can respond to God’s giving. People who don’t know God and the way he works fuss over these things, but you know both God and how he works. Steep your life in God-reality, God-initiative, God-provisions. Don’t worry about missing out. You’ll find all your everyday human concerns will be met.” (MSG)

3. To help you deal with what happens that day…

Matt 6:24

202 / 486

“You can’t worship two gods at once. Loving one god, you’ll end up hating the other. Adoration of one feeds contempt for the other. You can’t worship God and Money both.” (MSG)

4. To give you rest…

Matt 6:34

“Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes. (MSG)

5. To give you peace…

Phil 4:6-7

“Don’t fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God’s wholeness, everything coming together for good, will come and settle you down. It’s wonderful what happens when Christ displaces worry at the center of your life.” (MSG)

6. To give real treasure

Matt 6:19-21

“Don’t hoard treasure down here where it gets eaten by moths and corroded by rust or — worse! — stolen by burglars. Stockpile treasure in heaven, where it’s safe from moth and rust and burglars. It’s obvious, isn’t it? The place where your treasure is, is the place you will most want to be, and end up being. (MSG)

7. To grow in your faith…

James 1:2-4

“Dear brothers and sisters,when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing. (NLT)

8. To give strength whatever the financial situation

Phil 4:12-14

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“I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty or little. For I can do everything through Christ,* who gives me strength.” (NLT)

9. To lift you up…

1 Peter 5:6-7

“So humble yourselves under the mighty power of God, and at the right time he will lift you up in honor.Give all your worries and cares to God, for he cares about you.” (NLT)

10. To meet your needs…

Phil 4:19-20

“You can be sure that God will take care of everything you need, his generosity exceeding even yours in the glory that pours from Jesus. (MSG)

11. To protect you from fear…

Proverbs 46:1-3

“God is our refuge and strength, an ever-present help in trouble. Therefore we will not fear, though the earth give way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. (NIV)

12. To be with you…

Isa 43:2-3

“When you go through deep waters, I will be with you. When you go through rivers of difficulty, you will not drown. When you walk through the fire of oppression, you will not be burned up; the flames will not consume you. For I am the Lord, your God.”

13. To renew your strength…

Isaiah 40:31

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“But those who hope in the Lord will renew their strength. They will soar on wings as eagles; they will run and not grow weary, they will walk and not be faint.” (NIV)

14. To give you wisdom…

James 1:5

“If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him.” (NIV)

15. To direct your decisions…

Proverbs 3:5-6

“Trust in the Lord with all of your heart; do not depend on your won understanding. Seek his will in all you do, and he will show you which path to take.” (NIV)

16. To give you something to look forward to…

1 Corinthians 2:9

“No one’s ever seen or heard anything like this, never so much as imagined anything quite like it — What God has arranged for those who love him.” (MSG)

17. To answer your prayers…

Matt 7:7-8

“Keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. For everyone who asks, receives. Everyone who seeks finds. And to everyone who knocks, the door will be opened.” (NLT)

18. To comfort you, and comfort others through you… 2 Corinthians 1:3-5

“All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us.” (NLT)

19. To bring joy…
Ps 126:5 “Those who plant in tears will harvest with shouts of joy.” (NLT)

20. To bless those who bless others…

Proverbs 11:25

“The one who blesses others is abundantly blessed; those who help others are helped.” (MSG) 21. To reward your faith…
Matt 17:20

“Jesus told them.”I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there,’ and it would move. Nothing would be impossible.

For Her. Bobbi


August 14, 2009

Bailynn had a better night of sleep, but it has been a rough day.

I found out what school Ryan goes to, my girlfriend teaches there….is this a sign? I need to call an adoption lawyer.

We head to TN. in the morning for time with Grandma & pa and the girls can’t wait.

Isobel has had a semi rough first week, but I am sure things will get better. At least she ate her lunch today, that is a start.

Lila is broke out in hives!!! She is going to the allergist now also – gold fish crackers seem to be the culprit. Ugh!!!! So, she may not be lactose intolerant she may be allergic to milk!!!

Another day and Praise God it is Friday!!

For Her. Bobbi


August 14, 2009

The swiftness of time is infinite, as is still more evident when we look back on the past.

Saturday August 16, marks the one year anniversary of Bailynn staph infection. I am amazed at what the year has unfolded before us and blessed that Bailynn made it through it all. It seems like different life, yet the feelings are still so fresh.
I find great peace in the fact that she has healed and been well despite it all. It is the little things in life that hold us all together.

Be strong and take heart, all you who hope in the LORD.

Psalm 1:24

For Her. Bobbi


August 18, 2009

Bailynn has her screaming hat on again tonight. Today was an okay day though, she only had 3 seizures. She was even in a pretty decent mood for most of the day. I have to say she really loves riding in the car to take Isobel to and from school :). She gets so excited to go for a ride!

Tomorrow we have open house at school and Isobel is pumped to show me her locker…how funny! She just couldn’t be more pleased with having her very own locker. I am surprised she hasn’t asked for things to go in her locker!

Tomorrow is…well I guess today is my baby brother’s bday. Okay, I know he is not a baby! Jacob is 20. My parents no longer have any teenagers :(.

Also, calling all Box Tops. For all those amazing box top collectors from last year, I am pleading for more this year. If you have any please send them our way. Hopefully Isobel’s class will start off the year with a bang!

I also wanted to take a moment and thank so many people out there that have given us diapers and boost over the last few months. You have been such a blessing to our family. I don’t know how we would have made it through these last few months…truly. Everyday we get bills in the mail from doctors and hospitals and your kind and loving contributions have helped more than any of you could ever know. God is good, all the time…and he has blessed our family with so many earthly Angels! Blessing to you and your families as well!

Big thanks to the St. Paul’s Nursing Parish (man, I hope I got that right!!). Bailynn’s own personal “Equate” fairies!! She is so blessed to have such loving people supply her with her beloved beverage of choice!

It has been a long night and tomorrow has snuck up on me. I am heading to bed. Night to all and thanks again.

As always, For Her. Bobbi


August 19, 2009

*sigh* It is Wednesday, wish it were Friday….

Bailynn had a good day yesterday. She didn’t have too many seizures, she slept, she ate, and I wish I knew the magic trick to it.

Isobel however is having a little harder time with her back-to-school life. She, just like last year, is having a hard time finding someone to play with at recess. She tells me that all the other children pretend to be something that they are not and she just doesn’t want to pretend. I am not sure how to help her in this department except to pray that she has the perfect little friend delivered to her. She is such a bubbly and friendly little girl, that I just don’t really get it. I told Bob that if there were children with handicaps, she would gravitate to them and be an instant friend….why is it so hard with her peers?

I am hoping today is better!

Now it is nap time and I am looking forward to some peace and quiet and sometime to read. Then we are off to get Isobel and to swim lessons. Another day.

I hope everyone else’s Wednesday is going well.

For Her. Bobbi


August 20, 2009

Happy Birthday to my Memaw and Happy 5th Birthday to Will!!! I hope you both have a wonderful Birthday!!!

Today we head to the Allergist for Lila at 10. I will let everyone know how it goes later. Bob is going to meet me there. He went in really early this morning so that he would only have to take 2 hours off…he is going to be exhausted.

Bailynn slept well last night. She has already had 2 bad seizures this morning, I just don’t know!

Isobel played with a little girl on the playground yesterday!!! She says her name is Meggie (sp?) and she has yellow hair just like her. She is not in Isobel’s class, but here is hoping that they play together again today!

For Her. Bobbi


August 20, 2009

Lila’s skin tests did not show a reaction, but because of the issues the doctor had labs drawn. She said that just because Lila doesn’t have an allergy doesn’t mean she does not have an intolerance. This is actually better because an intolerance has no “life threatening” results. The blood work results should be up in about a week (7 buss. days). For now we are not suppose to give her any milk (which we haven’t in like 6 months) or silk….uh, what does that leave….Rice Milk- EWWWWWWW!!!! Okay, I am not giving her Rice Milk, that is just mean!! So I am working on alternatives. I got her V8 Splash, OJ with Calcium and Vitamins, and Gatorade. She is a healthy eater and I believe until we get the results, she will survive ;).

Bailynn’s day seemed much less eventful. She did great at the Doctor’s office since it was not for her and she

got no nap (no one did). We got Isobel from school and then headed out to get some new shoes, why do kids have to continually grow?! After a long day everyone is in bed and Bob is waiting for me to get done so we can go to bed also!!! Fun right! Bring on Friday, I am so ready for the weekend and I don’t even care that we have a million things to do. I bought stuff to make Chili on Saturday and I am going to suck up every bit of the


August 21, 2009

weekend! Here is hoping you do too!!

Have a great one. For Her. Bobbi

Both the Twins are running a fever…Figures, it is Friday :).
I am not sure what is wrong, but Lila was up most of the night crying and clinging to me. I spent a lot of time in her room trying to get her to fall back asleep, she was fine as long as I was there!!

Everyone is napping right now *ah* peace.

Isobel is excited because she can play the Wii when she gets home tonight. She has went back into the swing of things really well. She played with Meggie again yesterday. She said they looked for caterpillars and didn’t find any :(. She was very disappointed! Today she said they would look again. My little super sleuth :). She is still not doing well with her lunch on a daily basis and the last two days she has not drank her drink. I begged her to drink it today. She claims she just doesn’t have the time!

Thanks Peggy for the 56 Box Tops!!! Isobel was thrilled!!
Here is hoping with the cooler weather tomorrow comes cooler children!!!

For Her. Bobbi


August 22, 2009

5 pretty little girls + homemade cookies + Beautiful weather + 1 pot of chili + 1 large pile of movies from the Library (mainly animated) + 6 free passes to Putt Putt = one fun and almost Free day!!!


August 24, 2009

I hope everyone is enjoying their Saturday!!!

For Her. Bobbi


August 23, 2009

Happy 60th Bday to “Papaw” aka Bob Hammonds 🙂 &
Happy 30th Bday to my Cousin Nikki aka Aunt Nikki 🙂

I hope you both have the best day!!!

Saturday was beautiful, as was Sunday, but of I was sick. I feel much better today. A stomach bug got Lila, Naomi, and myself over the last few days, but I am happy to report no one else seems effected and we are all doing better. Today our windows are thrown wide catching the lovely fresh air and keeping us cool (I am sad it is suppose to get warm again by the end of the week).

Bailynn had a good weekend with only a hand full of seizures. She is right now sitting in her chair in the Family Room with her eyes barely open wishing I would put her back in her bed….she will wait till nap-time!!

She has slept better the last few nights and the only trouble we are having is with her diapers leaking all the time. It is not a diaper malfunction it is an overload!! She is urinating so much; they just can’t keep up. Bob has even suggested double diapering her, but I think that would effect her sleeping!! We will have to do something soon. Though it does not really affect her sleep, it is affecting my laundry load :). Well, here is to another Monday!! I hope everyone’s week is starting off well.

For Her. Bobbi

If you do not hope, you will not find what is beyond your hopes.

St. Clement of Alexandra

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. – Philippians 4:6


August 25, 2009

Bailynn has had multiple seizures today, but she has been in a great mood despite it all.

Arwyn announces each one as “Bailynn is having a YUCKY!! Again!!!” and then she promptly asks me why Bailynn won’t stop. If only I had that answer.

Isobel has her very first Spelling Test tomorrow. She is such a big girl!!
For now I am hoping for a peaceful evening and I am gathering up things to give the girls a shower.

Tuesday almost down, the rest of the week to go…

For Her. Bobbi


August 27, 2009

Isobel has a friend at school, she is eating her lunch, and she jumped rope 15 times in a row in gym class yesterday. She was so excited a bubbly. Then we headed to swim lessons where her instructor told me that with her long skinny limbs that she could really be a great swimmer. I had already thought about swim teams in the future, but it is nice to hear that some one else agrees that your child could potentially do well in a sport.

Bailynn continues to have too many seizures and last night Bob saw a type of seizure that she hasn’t had in a while. I have left a message this morning in fear that we are treating her seizures with the wrong type of medication, because every different type of seizure has a different “best” anti-seizure medication. This will probably mean a sleep EEG, but I am not sure how to pull that off just yet. We will see what the neurologist thinks.

The other girls are doing great. The twins are walking around everywhere and getting into everything…it is glorious. Arwyn loves playing with all the toys while Isobel is gone to school and though she misses her playmate she enjoys her freedom.

What a beautiful day. I hope everyone is enjoying it.

For Her. Bobbi


August 30, 2009

What a great weekend! The weather has be beyond beautiful, Bailynn has had barely any seizures and slept (due to the windows letting the fresh air rush in I am sure).

I ran with Leahanna yesterday looking at wedding things for November (my brother Jacob and Leahanna’s wedding is in November and the excitement is in high gear!). Bob had a fun few hours spending quality time with his ladies. Then last night to top the day off I made Fried Green Tomatoes…my favorite!!! Today has just been so pretty. We thought about going out to New Harmony and walking around, but decided on naps and hanging out at the house instead.

We finally got the lab results from Lila’s blood work. She is not allergic to soy or milk, she has an intolerance. This is better, though she still can’t have them, at least she will not have life threatening results if she ingests them. I gave her a little soy milk on Thursday and she broke out head to toe again…ugh. Now she is drinking Lactose free Milk…she doesn’t like it and we are having to add chocolate syrup to it. Oh well!

Isobel ate lunch every day but one last week and everyday has been playing with her new found friend Meggie (I am anxious to find out who Meggie is…She also loves a little girl named Ali and has played with her a bit, Ali was in her kindergarten class last year and she misses her!!). Isobel also spelled every single word right on her spelling test last week and she is so funny to act as if it is not big deal; despite it’s new place on the fridge!!!

I want to thank all the people who have been sending us box tops: like Aunt Brenda, Molly, Peggy, Cathy, Beth, Carol, Karen and so on. Isobel between all your contributions and what we have saved over the summer has 400 box-tops to take to school!!! Can you believe it? I can’t!!! She is so excited and please keep them coming!!

For all out there who continue to read and get a small glimpse into our lives every week, thank you. You are such a blessing to me. A way to release and share the struggles and triumphs of the week!

With deepest love and gratitude and Always For Her. Bobbi


September 2, 2009

We are half way through the week and so far so good.

Bailynn has been sleeping well and eating well. She has been in a good mood and even a little silly the last few days. I made a big pallet in her room on the floor so her sisters can come watch movies with her when she is in there and she loves it.

The weather is so beautiful. I don’t want it to ever end :). The windows are still open and the fresh air is just marvelous.

Naomi is doing so well walking now that she is going to be discharged from PT. We are going to miss getting to see Beth every week, but I am just so proud of Naomi. Her and Lila roam around everywhere and fight over every little item!

Isobel has had a good week at school so far. Today she took in her 400 boxtops…I wish you all could have seen her face!!! I am working on preparing Arwyn for Kindergarten next year now. She is just going to love it.

Thanks for Keeping up and may the week continue so beautifully! For Her

Bobbi


September 3, 2009

Isobel is running a fever. When I picked her up from school I could see it in her face. She doesn’t feel good, but would never say so.

It has been a very long day. Bailynn has had 4 seizures, she isn’t eating well, is acting extra sleepy, and isn’t herself. I haven’t felt well today either. Bob still isn’t home from work and the girls are begging for him.

Tomorrow is the gateway to three day weekend…it can’t come soon enough :).

Bring on Labor Day.

Here is the link to my newest Article. The topic is our nation, our media, and our children’s future in it.

Here is hoping things get better tonight!

For Her. Bobbi


September 7, 2009

Bailynn spent the night throwing up, the day not eating, the afternoon not drinking, and the weekend crying!!!!

It has been a terrible weekend of sick children at the Hammonds household. Isobel as you know came home with fever on Thursday. Then Arwyn and Isobel sported fever Friday and Saturday. Bailynn acquired the illness, but with no fever Saturday late. Now the twins have joined the club and if Bob and I get it, the family will have a full sweep through of sicky!!

I am so tired, as is Bob. Bailynn had a long restless night and toppled out of the bed for the first time in over a year and a half. Tonight the trundle will have to be pulled out or a pile of pillows on the floor. Now everyone is down for their afternoon naps. We are trying to hook an antenna up to our Television to drop cable and save some money (not a lot, but $12.42/month over a year’s time, adds up!).

Now I am hoping tomorrow, when Bob has to return to work, that we have everyone’s health semi back to normal.

For Her. Bobbi


September 9, 2009

Taking children to the doctor at 11:40. Isobel is home from school again today! She ran a fever all night and has a really bad cough and green snot! Fun right!!

Bailynn is doing much better. Finally eating well, but coughing as well. Everyone is coughing…sounds like a herd of seals here.

Hopefully the doctor can shed some light.

For Her. Bobbi


September 10, 2009

So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.

Matthew 6:34 New American Standard Bible

Isobel was diagnosed with Bronchitis. She is doing much better today and is excited to return to school tomorrow just in time for Generations Day.

Lila sounds awful and if she is not doing better tomorrow I will probably run her out to the Doctor :(.

Naomi is very tired and her eyes are red all around. She hasn’t ran a fever in awhile, but I fear her starting to sound like my continual coughing Lila.

Arwyn has pulled through with the least amount of complications. The Doctor’s office tested her for strep and she didn’t have it (whew!).

The week as been long…the nights longer….

I am hoping the weekend brings us a swift recovery.

I am still cranking out as many articles as I can. I get paid very little per click and I am trying to get more things out there so I attain more hits! Some of my new articles are My screaming child: how to help children behave in public and A fun way to celebrate Halloween and kid friendly movies

For Her. Bobbi


September 13, 2009

Relief came to our family yesterday, tucked between catalogues and bills, in three crisp white business size envelopes. Each one contained a different bit of information. Telling us after 8 and a half years of waiting, Bailynn is finally approved for Medicaid Waiver (a government supplemental insurance that does not look at a families income, but instead at the need of the individual). The great thing is that since we have private insurance already this will cover all of Bailynn’s added expenditures. We are finally free (well as long as our government with all this health care reform stuff doesn’t later decide to rip it out from under us). Now we just need to pay off all of her past stuff from this year and my husband can stop his quest for finding a second job and I can just sit back and enjoy mine rather than trying very hard to make enough to put some dent in Bailynn’s expenses. Praise God.

Isobel did get to go back to school on Friday and enjoyed Generations day! She has found a little friend and is doing much better. Thanks to my mom for coming and spending a couple fun filled girl days with us, it was so great to have you and the girls arae already missing you :). Thanks also to my dad for driving up twice this week…I know it gets tiresome and we so appreciate it.

The twins have been coughing to make our family continue into a second weekend of being sick….here is hoping next weekend is better since it is the Kunstfest in New Harmony!!

If nothing else the weekend has been brighter because of receiving the information about Bailynn Medicaid….may it overflow into the week.

For Her. Bobbi

Psalm 40:1

I waited patiently for the LORD; he turned to me and heard my cry.


September 15, 2009

Okay, so one sickness down and somehow another one comes to take hold. Bailynn was up most of the night throwing up and then on our way home from taking Isobel to school, Naomi proceeded to throw up all over her car-seat and the back seat. Now the morning is packed full of cleaning, disassembling, and vacuuming…not what I had planned.

It is only Tuesday!

Here is hoping this clears through quickly.

Yesterday I spent the day on the phone with people trying to get everything taken care of through Bailynn’s new Medicaid Waiver. I found that there are only three providers that we can use to get diapers. Two of which are in Michigan….how DUMB!! We live in Indiana!! None of them carry Pampers. I am not sure what to do. She leaks out of every other kind of diaper we have tried. The other option is pull-ups, but with winter coming the thought of taking her pants and shoes off every time we need a change, is ridiculous!

I also talked to a man about ordering her some Boost. He was very helpful and I have got a script in to him to order some. I was told that there is a verification period to prove that she needs the Boost. It could take about a month to get it approved. I am hoping it does not take that long and I am so excited to be getting this service.

Though the night was long, the day moves on…

For Her Bobbi


September 16, 2009

Bailynn has pneumonia. We are currently trying to get her a “cough assist” machine to help her clear all the gook
from her lungs.

She threw up a small amount of blood last night and really scared Bob and I. He took the day off and we have spent the better part of the day at the Doctor’s office and waiting to get medications filled.

Bailynn’s doctor put her on and antibiotic and a medication to ease her stomach and hopefully control all the vomiting. This may give her esophagus and tummy sometime to recover from all the damage done throwing up so much.

What a day!!

I will keep everyone posted on her latest health. I really think this is the same bug Isobel had, but Bailynn is just not good at getting rid of colds and they progress into nightmares!

For Her. Bobbi


September 17, 2009

Bailynn slept better, did not throw up, but still coughed a lot last night.
I am still waiting to hear about the “cough assist” machine. I am getting ready to call and find out what is going on.

Bailynn is sitting in her chair watching Sesame Street right now (she always giggles when Elmo is on the screen – and Oscar the grouch!)

I hope everyone else’s Thursday is going well. I am ready for Friday and the start of the weekend.

For Her. Bobbi

Psalm 34:4

I sought the LORD, and He heard me,And delivered me from all my fears.

“No person was ever honored for what he received. Honor has been the reward for what he gave.”

— Calvin Coolidge

30th president of the United States

It is National Constitution Day. Of course I wrote a quick article about it with some fun links to the full text, fun facts, and much more.


September 18, 2009

Another long night. The coughing machine is coming today around 2:30-3:00.

Some how Bailynn’s waiver is not right. I talked to her case worker this morning and they are trying to figure out what is wrong and get it fixed. Figures!

The other girls are all doing very well and Bailynn is the only ones who continues to be sick. I am so glad Friday has come again. I wish away the week…so sad. I am really excited that this weekend is the Kunstfest in New Harmony though and I am screaming “Rain Rain Stay Away!!!” as loud as I can….and I love the rain!!!


September 21, 2009

Bobbi

Our Internet has been out almost all weekend…UGH!!!

Bailynn didn’t get her cough assist machine until yesterday and was missing a piece of her suction machine, which we got today.

I am off to bed and will tell more tomorrow. It has been a long weekend and I just got to put out a new article….zzzzzzzzz

I will update soon ZZZzzzzzzz. For Her. (even sleepy) Bobbi


September 21, 2009

Okay, much better with some sleep in me now :).

Yesterday was the eight year anniversary of Bailynn’s brain surgery up at Riley Children’s Hospital….I just can’t believe it was eight years ago. The events of that day I believe will always remain fresh in my brain. I recall the butterflies in my stomach every time I knew it was time for the “Update” Nurse to come in. I remember how food had lost it’s taste and the world spun around me as if I had no motion in time. I remember her face the first moment I saw her. Her eyes so clear and a bandaged whirled snugly around her head.

So eight years seems impossible, but seeing her giant long legs and sweet crooked smile reminds me how the time, though seemingly so close, has flown past with ruthless regard to me wanting to hang onto it.

Yesterday is a day that will forever be celebrated in our family like a second birthday, a beginning. Thanks to everyone for continually loving my Bailynn. She is such a joy.

She is doing better, but still coughing. She has her main fits when being transitioned from either sitting to laying. I have used her cough machine and suction devices this morning…um, HATE is an understatement from Bailynn. She just screams and cries. Makes me feel so kind. Here is hoping she gets use to the idea.

Her waiver is still wrong. I was told it was probably just the miss of a key stroke and she is not listed as disabled. Hmmmmm. How does that happen? Nowhere in the system does it state her condition or doctors, yet they needed every drip of paper work about her from birth. Seems shady to me! Maybe they will have it fixed by the end of the week. For now I am not to order anything like diapers or boost because she technically (according to her case worker) would not get them paid for right now because of the mistake. Always something right!!!

Okay, have a great Monday and enjoy the pleasent showers heading our way.

For Her. Bobbi


September 23, 2009

This week overall is running much smoother. Bailynn continues to cough at random parts of the day and I am using her cough assist machine in the mornings to help clear all the junk in her throat and chest from sleeping. Her skin is really splotchy and I am wondering if she is reacting to her antibiotic?!?

Okay, here it he deal on her Medicaid Waiver.
Somehow a “missed key stroke” occurred and placed Bailynn on Hoosier Healthwise. This is not what she is suppose to be getting. Nowhere in the database for Medicaid do they have her current medical status of “Tuberous Sclerosis” or that she is handicap in any way. Now, there is the past information that remains hidden behind all the current replacement “wrong” information. This error could take about 6 weeks to fix, as now they have to contact all her doctors still and obtain proper information. I had a lady call the other day to get releases (that I sent the first week of August). I am beside myself with disappointment. How do such errors take place? For now we still can order no diapers, no boost, and receive no assistance on therapies and such. I was told to not use the card that was sent to me. I was told to be patience. Bob and I are going to write our state officials when we figure out exactly what has happened. This is such a mess and such a let down. Here we go hopping on the “wait” train again. I will let everyone know when and what happens from here! Seems commonplace in this home for people to mess stuff up for us :(.

Thanks for all the Prayers and support!! Oh, and thanks Beth for the Box-tops, you Rock :)!!!

For “Miss Drama Herself” Bobbi

Check out my article on this weekend’s WNIN Kid’s Fest!! Check out this other great article on Abortion

*Picture of Lila (standing) and Naomi (sitting) at this year’s Kunstfest in New Harmony this past weekend!! We had so much fun.


September 28, 2009

It has been a few days since I updated last and not a whole lot has happened.

My parents came in for the weekend and we all celebrated Isobel’s Birthday a little early (her bday isn’t till October 11) because they will be out of town for her Bday.

Bailynn has been doing really good. I am still working on her Medicaid Waiver stuff, but honestly the state level is as unhelpful as the local level. I am trying hard to be nice, but persistent about the repair of their mistakes!!

Bailynn is not coughing anymore….it is so nice!!! She is eating good again and more than anything; happy. This morning however she has already had two severe seizures and for the first time I had to move her to a safer location (not that holding her hasn’t been a requirement in the past). She was sitting in her chair in the family room and about threw herself out with a fierce thrust and donked (our word for hit) her head on the sofa (at least it is soft). I laid her on the sofa till it was over. I think she has had them this morning because I woke her up early and she wasn’t ready to get out of bed (none of us where!!!).

Well Monday again. Another day. Here is to the start of the week!!

For Her. Bobbi


October 5, 2009

“Anyone can give up; it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.” -Anonymous

It feels like a year since the last time I updated and it has only been a week. Funny how sometimes life drags on and others it speeds right by with no regard.

Last week had its ups and downs like most. Bailynn had lots of seizures again but continues to be well and eat well. On Friday she created quite a start to the day. Just as I was getting shoes on everyone to load them into “Rocket” and take Isobel to school, Bailynn went into a very hard and bad seizure. This was accompanied by her drinking her breakfast boost. Needless to say, she vomited it all over herself. I ended up having to call school and tell them Isobel was going to be late. Then I had to set up temporary entertainment for the other girls while I scrubbed Bailynn down. Then one hour later I loaded everyone up, clean and ready to go, we headed to school to drop Isobel off and headed to Therapy for Bailynn. Surprisingly even after a long and hard morning she did great at Therapy. She even smiled a bit for Tammy (her PT); which she normally never does :).

The weekend went into a whirlwind, but we got to see my parents and my brother sold a car in less than 24 hours with no advertisement so who could complain too much right?!!?

Sunday felt like a repeat of Friday – minus the vomit. Trying to get everyone ready for church was impossible. As I placed the last bow and put on the final shoe the clock told us we were 45 minutes late for church. How does that happen? We had been getting ready for like 3 hours!!! UGH!!!

Today I have tried to catch up on Laundry. We went to a outdoor cookout at my dad’s friends house on Saturday night – It was tons of fun, but my brother Ben didn’t get to come and we missed him lots – however….everything we wore and took with us smelled of stale smoke and load after load has went through the washer and dryer trying to remove any remnants of the icky smell!! Bailynn’s chair got a good Febreeze job and still has hint-o- smoke..oh, well.

Bailynn’s Medicaid lady came to the house today. Nothing has been done STILL!!! Oh My Goodness!! Are they joking!!! What is going on!! Someone from the state is suppose to call me tomorrow (we will see if that happens, I think we have been black listed or something!).

The Fall Festival is going on, yet I have no real desire to go there yet. It costs so much money. Last year we didn’t go at all. Bailynn was so sick and the twins were still too little; it didn’t seem worth it. This year the cash flow is at a standstill, the twins are big enough to realize they aren’t going to get to ride the rides and Arwyn and Isobel don’t get that each ride costs like $3. It’s nuts!!!

Bob has taken Thursday and Friday off. The twins have shots and a check up on Thursday along with all the girls getting their regular Flu shot. We may head to Franklin St. on that day, but it looks like rain. Friday Isobel has Fall “Festival” Break from school so we are going to make the best of it and try to have fun.

Bob found out today that he has to work on Halloween. It is good that he will finally get some sort of overtime from work, but of course it is when we planned on going to my parents to visit. 😦

I have been so long winded, sorry!! Again, feels like I haven’t updated in ages… I hate that. I love sharing with everyone out there and I love hearing back from all of you. I want you to know it makes my day to see little posts in Bailynn’s Guest-book. It reminds me that people are still listening :).

For Her. Bobbi


October 7, 2009

It is Wednesday…when did that happen :)?!?!

Bob is off the rest of the week and all the way till Tuesday!! Big Hooray!! Isobel turns 7 on Sunday!! She has been telling everyone!!! (Love her)

Bailynn has been doing good this week. Still an increase of “yuckies” aka seizures, but still nothing that I can do about it.

I talked to Medicaid ladies today. They retook all of Bailynn’s info. That I gave to them in a phone interview on July 27th!!!! Oh well. They claim they don’t have it. They have told me her case is “flagged” and going to be expedited….we will see!! I am not holding my breath.

Today I was inspired by a good friend, Peggy Shanks, to write about preparing a child for surgery. Her daughter is undergoing surgery on October 20th at Riley and I know that pain of anticipation and worry. My ARTICLE today is in honor of that remembrance. Please read…or at least click for me :). (Also, feel free to share my article site with anyone and everyone…I really need to pick up the traffic!)

All the girls are getting thier regular Flu Shots tomorrow and we are going to try and enjoy Bob being with us. I am looking forward to our 5 day weekend!!

Love to all. For Her. Bobbi


October 9, 2009

The girls are really sad that it won’t stop raining. We had said we would go to the Festival if it did. Oh, well :)….save us $$$$!!!

Today we are hanging out at the house blessed with daddy’s presence :)!!! The girls are loving it!

Right now everyone is down for their afternoon naps and I am working on more articles and Bob is realizing that there is NOTHING on TV in the afternoon – told him!

Bailynn is doing well and the girls were great getting shots yesterday. Isobel and Bailynn didn’t even cry. Everyone got ice cream for being so good and we stopped to order Isobel’s Bday cake on the way home from the Doctor. She is very excited and changes her mind every 5 minutes as to what she wants (they are all wii games however).

I hope everyone else is doing well also. My article for today was again inspired by a friend – Ms. Peggy- who’s little Ali is having surgery on the 20th. I hope everyone enjoys it. It means a lot to me to help other parents out there that are going through things that my family has dealt with. CLICK HERE to read!!

Oh, yesterday it was 10 years ago to the day that I found out I was prego with Bailynn – and it was a Thursday that year also :)!! So fun to remember that day. I called Bob on the phone and told him…I couldn’t wait till he got home!!! Then I felt bad for telling him over the phone. Silly right.

Okay, everyone have a wonderful rainy Friday!!

For Her. Bobbi


October 13, 2009

This past weekend was good overall.

We ventured down to the Fall Festival for the first time in two years on Saturday. It took a lot of explaining that we could not ride rides and that we where just there to get corn dogs. The kids did great with it. Arwyn only asked to ride one of the big “scary” rides and it was nice to be able to say she could not ride it when she really could not ride it :).

We got to go to a bday party for my cousin’s little girl, Aiva, that lives out of town and it was great to see everyone.

Isobel turned 7 on Sunday and though our family had started with signs of sick we all celebrated and had fun. We took her to Target where she go a slushy and popcorn. She also got to pick out a new wii game….which she got “Up” from Disney’s new movie. Then we went to dinner and came home. No one really was feeling well enough to dive into cake, but Isobel and Arwyn took a stab at it. Than Sunday night turned long with coughing, sneezing, lack of sleep, and the fact that Bob had yesterday off helped us recover a bit.

Isobel stayed home from school with her sister’s running high fevers. We figured she wouldn’t be too far behind and I was right as this morning I climbed the stairs to wake her and before I even touched her I could feel the heat rising off of her. She is currently running a 101.7 fever. Arwyn is running 101.4. Yesterday is was Bailynn and Lila, tomorrow it will leave Naomi. I have tucked them back snugly into their beds and now am waiting to call school and inform them. Hopefully Isobel can return to school tomorrow.

Bailynn despite not feeling well is eating and not screaming. We have used her suction machine to keep her cleaned out and when she has thrown up it helped immensely to control the damage.

We at first believed that the girls getting their flu shots on Thursday had resulted in them getting sick, but we were wrong. I hope everyone else is having a better beginning to their week. Today will be another day of recovery.

For Her. Bobbi


October 15, 2009

Why does sick linger so long? Oh, that’s right – we have 5 children :).

Naomi is the last of the troop to run a fever and she has ran at a steady 101.8 all day. Medication helps for a small period of time, but overall she is just down right sick. At least the other girls are all but recovered. Isobel even got to rejoin the land of the living today and head to school. She had missed almost an entire week due to this undying cold.

Today was the first time since Isobel’s Birthday on Sunday that the girls and I have left the house….sad. Can anyone else believe how cold it is? I love the leaves though. The beautiful colors adorning every tree. God is such a show off :).

Anyway, it is Thursday -somehow- and Bob has to work on Saturday (finally a smidgen of overtime!). The Hopefest is this weekend, on Saturday, and here is hoping everyone is well and we can attend. I am very excited for it. There is suppose to be a Magician and a Musical Therapist and we get to see people that we just don’t get to see all that often.

I hope all is well with your families. Fall is here in full force raking out winter temps and I am getting the Holiday itch. Of course we also leave for Disney just days after Christmas, so that adds to the excitement of the Holidays. They will come and go like years before, but I swear the children make them so fun each year.

We head to Indy on Monday for Doctor’s appointments. We will be talking about the increase of seizures again. Maybe there will be some light to be shed. Bailynn is acting like she is going to throw up during them more and more often and she is not breathing. It is very scary. I have watched them for nine years now and they still take my breath away for the moments between start to finish. I am always praying it will end quickly for her. I am always hoping she doesn’t hurt. Anyway, we will see what Monday holds. I will update when we know something.

For Her. Bobbi


October 18, 2009

Congrats to my friends Beth and Tim Young who gave birth to their second daughter on Friday, Ms. Paige Nicole Young…she is a doll!! We can’t wait to meet her.

It has been another weekend with fever. Naomi ran a fever until yesterday afternoon and so we didn’t get to go to Hopefest and church, yet again, was off the schedule. Naomi ran a fever for over 48 hours…this sick season is not good. Our children have never gotten so sick so close together. H1N1 stay AWAY!!!!

Heading to Indy in the AM. We have to leave between 4:30 and 5:00 AM. Bailynn’s appointment is at 9:30 our time with her Neurologist.

Then we are going to hook up with Ali Shanks and her family tomorrow at the Hospital. She is having surgery on Tuesday. She has a Caringbridge now also at http://www.caringbridge.org/visit/alishanks. You should go check it out. We just love her family and she could use some extra prayers on Tuesday.

Anyway, I plan to lug my laptop with me so I can update when we know something. The girls are excited to go; as always. I am heading now to give Bailynn a quick shower and put her to bed. Everyone else is already sawing logs and Bob and I need to finish loading up everything for tomorrow.

Hope everyone has a great Monday!!

For Her. Bobbi


October 19, 2009

We are home.

We had a good day at the hospital. We got to see Ali Shanks before she has surgery tomorrow, she is very scared – please pray for her.

We saw Bailynn’s Neurologist and she upped Baiynn’s VNS’s strength. She said that if it doesn’t help seizure control we are to increase meds in 2 weeks. I am not really happy with increasing meds, but what else are we to do.

We had a longer than expected trip home with Bailynn’s diaper leaking and having to get her some new garb in Terra Haute. Always fun! Everyone did great though and after getting up at 4 driving for about 9 hours (total) and getting home around 6; everyone is FRIED!!! The girls are all snugly in their beds, and relieved it is all over. Bailynn is eating her dinner right now and Bob and I are glad we were home before midnight :). Tomorrow we return to “real” life and await our next trip in Indy in December.

Here is hoping the VNS increase helps.

For Her. Bobbi


October 22, 2009

The week has moved slowly and I am relishing in the fact that it is almost Friday; though Bob has to work again this Saturday.

Bailynn seizures have been better this week but she has not had a very good appetite?!?!?! She has been in a good mood however and a little sassy about her sister’s wanting to watch the same things over and over. She is like her mother and wishes to mix it up a bit :).

The other girls are doing well. The are looking forward to Halloween and my little brother’s wedding that is just a smidgen over a month away.

I am sitting here in my quiet house as all the girls nap awaiting the alarm to go and get Isobel from school. She told me she would miss me “so the biggest today” and that she misses me everyday…makes me want to home- school :). (not really!)

I have been trying to catch up on writing projects. Going to Riley and working on other projects this week has really thrown off my groove.

I hope everyone else’s end of the week is wrapping up nicely. Enjoy it…every second of it.

For Her. Bobbi

Here are my latest. Enjoy….even if you don’t read please click for me..beg, beg, beg :P.

One-of-a-kind designs for Children’s spaces by Uppercase Living

Waiting; a mother awaiting a child in surgery
Today a mother waits silently with hands crossed and prayers whispered as her child slips off through the doors of an OR.

A mother breathes small shallow breathes trying to not cry as the fear in her child’s eyes still shows fresh in her mind.

A mother weeps knowing, though her child is surrounded by professionals who do this kind of thing every day, that her child feels all alone.

As this mother sits and the clock on the wall ticks louder and slower than ever remembered, the day’s minutes feel like years. Food has the taste of stale cardboard and sunlight brings no joy. Somewhere in the depths of that

hospital her child lays at the hands of another and who can blame her for her face and her posture. {Continue Reading Waiting…..}


October 25, 2009

Life is either a daring adventure or nothing.

Helen Keller

It has been a terribly long weekend. Bob is at work, same as yesterday. We tried to take the children out of the house a bit last night and see the world; they loved it.

I am working hard trying to clean every nook and cranny of our home…needless to say with 4 dogs and 5 children – the moment one thing is clean and I move on – the last thing becomes dirty again :(.

Bailynn has been resting well the past week. I believe vamping up her VNS (Vagus Nerve Stimulator, that sends pulses to her brain to help with seizure control) has improved her ability to control seizures overnight and sleep.

It doesn’t feel like Sunday. Since Bob has worked all weekend it has just felt like a continuation of the week…still looking for Friday. We won’t be getting any anytime soon, Bob works again next Saturday.

I hope everyone else is doing well and enjoying the beautiful weather. The leaves all around us are breath taking. I just love the fall and wish we could skip on to spring, but no…winter must come!

I am looking forward to “falling back” next weekend. I like that better than “Springing forward”… I feel like we regain our precious sleep cycle and for about a week, it feels like we are sleeping in!!

Isobel would like to thanks Karen T. for the Box Tops… I wish you could have seen her jump up and down like it was Christmas morning!! My kid asks for Box Tops…how funny is that! Oh, and Ipods. She told me all she wants for Christmas is an ipod followed by Please, Please, Please. I tried to explain to her that she has 4 sisters and her come back was “get them one too!!” Okay, lets do the math folks…NO!!! She is so funny. So she told me she would just tell Santa she wanted one and stuck her hip out! I told her she better call “Grandma & Pa and Mamaw & Papaw Santa” (You guys are Welcome!!)…she just glared at me and didn’t get it 🙂 God love her!!! This is the first thing she has EVER asked for for Christmas. I feel bad that she won’t be getting it. Oh well, she will live – right!! Baby Jesus lived fine with out an ipod 🙂

Have a wonderful Sunday. Love to all. For Her.
Bobbi


October 27, 2009

Bailynn has a really rough seizure this morning in the car. I had to pull over for a moment because she was throwing herself really hard toward the window.

On top of that I didn’t sleep well last night and my throat feels like it is on fire…what a great beginning of the week.

Bailynn didn’t sleep well at all last night either. I kept having to get up and check on her. She was just restless and I felt awful..we were the perfect match – not really. I am really looking forward to having the sleep study done in December at Riley to see Bailynn sleep pattern.

Everyone else seems fine and Arwyn just slipped Tinkerbell the Movie in. The twins and her are sitting and watching attentivaly :). They love TINK!! The new movie came out today – I need to get it for them.

Enjoy the rainy day…

For My Bailynn Bobbi


October 28, 2009

Another night of restless sleep for the Hammonds family. My throat if feeling 100 times better today and I am catching up on missed play time and vacuuming….never a moment to sit around here.

Bailynn did not have any other seizures yesterday, which was really good seeing as the one in the morning was bad enough to last a lifetime!

She didn’t eat lunch well yesterday and I kind of think it was carry over from fatigue. Currently she is blowing giant raspberries at Sesame Street (all the girls are staring mindlessly at Elmo!!).

I am enjoying the peace this day has brought and Arwyn, like her mommy, has said how much she loves the rain (I however do not like dogs with muddy paws!! -UGH!!)

I have to tell everyone a little story about the girls……

I decided for an article to write about making Pixie Dust. My girls, as most of you know, adore Tinkerbell (They can’t wait to see her again in 65 days!!!).

I got glitter, salt shakers, tags, stickers, and other little things to make Pixie Dust, bottle, and sprinkle it. During the process I took pictures and compiled them all into a friendly easy to do craft guide. It was so much fun!!

Once Isobel and Arwyn has their salt shakers full, tags placed, and stickers stuck they headed for the family room.

Okay, most have you have never seen my home so I will try to paint a picture…I need to just take one! Anyway, our dinning room is an addition from when we moved Bailynn to the first floor and had to wipe out my Piano Room (that is Bailynn’s room now). So our Dinning Room has a normal ceiling. Our Family Room, which is connected to the dinning room, has a 2 story ceiling (The upstairs over looks it).

Isobel and Arwyn ran to the Family Room, sprinkled their dust, andwaited……then Isobel exclaimed – “Uh, I am not flying!!!!” She sprinkled again!! “Mommy this is broken. I can’t fly.” How cute!! She thought the Pixie Dust would really make her fly :). She was so disappointed. She even sprinkled the dogs in hopes that they would fly.

We then went to a party for a friend of the family’s little girl that had surgery last week, which went excellent and she is coming home today!! Isobel and Arwyn made her some Pixie Dust to sprinkle if she felt scared. Isobel immediately told her “It doesn’t work though, it won’t make you fly!”

I love my children!! Isobel told me just this morning. “Mommy, there are real fairies in this world; I know it!” I left her to believe…..why not!

For Her. Bobbi


October 30, 2009

Happy 1st Birthday to our Nephew Caleb!!

Rough night here. I have some sinus issues :(.

Now today I fired up my cold laptop and started writing. Ah, it is finally Friday!!!! I hope everyone has a spooky weekend!!! Enjoy!

A mom’s review of Ice Age Dawn of the Dinosaur Inspirational quote of the day; happiness


November 2, 2009

I believe I have a sinus infection. My voice is gone….gone. My head feels stuffed with cotton balls. I cough more than I sleep, but no fever and I don’t feel “bad” – just not right.

However, I woke up this morning, semi rested, and overwhelmed with appreciation. We have entered the month to be Thankful and today my heart sings with blessing.

The girls and I all woke up much earlier than normal (due to the time change). The morning moved at a nice easy pace and Bailynn smiled at me with the biggest smile I have ever seen. (I normally wake her up to move her into the “Rocket” to take Isobel to school…she grimaces.)

I am reminded today as I type this entry, that a year ago Bailynn was recovering from her rods being removed, she still had a PICC Line, we knew she would have to have rods placed back in, and the year had seemed to never end. Now that those times are past and the rods are in, her health is good, and her smile is bright.I am reminded of how fortunate I am to still be able to write about her everyday; even if the day is otherwise uneventful.

How grand it is to have nothing to write about. Today there is nothing to report…she is strong, vibrant, and Praise God…HERE! I love this day!

Do you ever wake up overwhelmed with these feelings? I am just so glad that my house is full with the sweetest faces. So today I rejoice in the sweet nothings. The days that bring no massive event to write about. How glorious those day are!!

Bailynn had a rough day yesterday with not eating and such. I think she didn’t feel well. She is doing much better today!

She actually drank some boost. When that kid doesn’t drink her boost, I know something is WRONG!!!

Yesterday I put down my laptop and sat behind my sewing machine enjoying its roar and feeling accomplished when I got a lot of forgotten projects done. I only have a few more things to mend and finish.

For Her.

Bobbi

I hope everyone else’s Monday is as bright and shinny as mine.

For “my blessing” Her. Bobbi


November 6, 2009

Bailynn was throwing up tonight and very GRUMPY!! She is soooo tired. Hopefully tomorrow will be better…


November 8, 2009

Bailynn is having a bowel issues, phlegm, coughing, grouching, tired, and crying day. My husband is at work again today. He has worked so much lately we hardly see him (I can’t complain much, a little overtime goes a long way in this house.)

If Bailynn is still not feeling well tomorrow I will be calling the pediatritian. All the other girls are fine!! That is a blessing.

My parents came in on Friday for a visit. It was so much fun and they ended up heading back to Tennessee last night. The girls were very sad that they were not here this morning! Now today is catch up on laundry day (which Bailynn is not helping out with) and mop the floors day. It has been a long morning so far.
I hope everyone else’s weekend is going well. I will try to update later or tomorrow on Bailynn’s status.

OH, and she has no Medicad Waiver…no lie!!! It is that messed up. Something we should have had for over a month now and still no light at the end of the tunnel. SWIRCA is not helpful, the state loses everything, and the doctors claim they have sent everything in!!! I am at wits end with these people!!!!!

For Her. (Vomit and all!) Bobbi


November 9, 2009

Bailynn is having a better morning. She still has some phlegm issues and does not handle it well, but it watching the new Tinkerbell movie with Arwyn and Naomi….Lila is looking through catalogs – she loves them :).

I don’t know if anyone else saw on the news, but they are announcing a major Maclaren Stroller recall. I don’t know if the ones for special needs children are going to be on the model recall list, but I know a lot of you out there have them. I had to write an article about it since it is such big news. Here is the link for all the moms out there that have Maclarens…. Maclaren stroller recall; How to contact Maclaren.

Bailynn did manage to eat well this morning and I believe our suction machine and cough assist machine are invaluable – THEY ROCK!!!

Today I am going to be calling our Medicaid Waiver lady, pray I keep it together on the phone :). I try so hard to be “stern” nice. A hard combination to pull off!

Alright, that is it for the morning. I hope everyone else is having a great Monday!!

For Her. Bobbi


November 9, 2009

I HATE Medicaid…okay, Hate is a bad word, Isobel would instruct me to spit it out so, “plew plew.”

I can’t find anyone with sense to tell me what is going on with Medicaid and I recieved a denial letter today for Boost (because the Medicaid is wrong!!!). This is the straw that has broke the camels back!!! Tomorrow I will try state level again. They are normally even less helpful! UGH!!!!

Other than that we had a decent day and night. Isobel got one last session of Horse Back Riding Therapy in. It will resume in the spring. The weather was wonderful and she is always bursting with conversation when she gets off. So rare for her to try to engage us rather than talk at us. I love it when she tries to ask a question that makes sense :).

The twins however where worn out from the day and practically leaped into their beds when we got back from Horse Back Riding. (It was 6:30). Now the house is quiet and I am headed for the shower. Another day down. Where do they all go? They just fall away it seems.

This week marks 2 years since Bailynn originally got rods placed into her back. So hard to believe. It truly feels like yesterday; especially with all the complications that followed.

Here we are today, almost gone…nearly tomorrow….and 2007 seems moments ago. I still remember the anxiety of being very pregnant with Lila and Naomi – knowing we were going to be in the Hospital for a week with Bailynn.

I still remember how Arwyn spoke about what was happening to Bailynn (she was only a few months older than what the twins are now).

I recall Isobel’s unbelievable concern for Bailynn when she cried and Doctors came. Funny how two years can pass and the days seem so few between.
The twins are nearly two years old and we are rounding the finish line of 2009.
So much has happened.

So many people came to our side as we struggled through keeping Bailynn alive in the moments of doubt a year ago….It is just so hard to think it has been 2 years – long on one had and so terribly short on the other.

Thank you – Thank all of you – I just can’t tell you how much I enjoy hearing people tell me they are keeping up still with my Bailynn and her life. It is amazing to me how many of you out there still care to hear about the little blonde hair girl that has changed my life and made me stronger by first breaking me down.

She is such a blessing and she has given me the best and most precious gift – friends that I would have never known if had not been for her! Thank you! Thank you! Thank you!

For my precious Bailynn. Bobbi


November 11, 2009

Thanks to all the Veterans out there!!
Today is great so far. Bob got home really really really late last night, so he hung out and had breakfast with us this morning before heading back to work.

Isobel is thrilled to have the day off and hang out with her sisters. Right now they are all watching Ice Age 3 in Bailynn’s room. When I asked them if they wanted to come to the family room they say “NO!” They love being with Bailynn in her room(I even said I would move her to the family room, but still “NO!”)

We are laying low today and the girls are enjoying thier PJ’s!! I hope everyone else has a wonderful Veteran’s day!!

For Her. Bobbi


November 16, 2009

Wow, it is Monday again!!!

It was a great weekend. Bob had to work on Saturday, but we got to go to a Birthday party and Target (always fun!). We finished our Christmas shopping (whew!) and now it is smooth sailing through the holiday season.

Bailynn has had a great couple of days until last night when she had a rough seizure and than another this morning. She looks really tired :(. She ate her breakfast and watched a little TV, but now she is laying down and much happier!

Another start of a week….I can’t believe Thanksgiving is next week!!! I hope everyone out there is doing well!

For Her. Bobbi


November 18, 2009

This week has been a doozy. Isobel has been having a lot of meltdowns and crying for no know reason. I asked her if she didn’t feel good, if she didn’t want to go to school, if someone was being mean to her, if she was tired…hungry…hurt and all the answers were responded to with a big “NO!” Yesterday she woke up crying hysterically to the point of making herself sick and I made a swift decision to let her have the day off. We popped popcorn, watched movies, colored, and played. It was a great relaxing day and just what the doctor ordered.

She was herself last night with no major meltdowns and the today ran as smooth as ever. Tonight while brushing her teeth I noticed 2 of her teeth were about to literally pop out of her mouth!! She struggled, cried, screamed, said she needed to go potty, said she needed to hug everyone in the house, and basically made every excuse in the book to get out of having her teeth pulled the rest of the way out. Bob held her,I grabbed a wash cloth, and within moments she was down two teeth! She has them tucked safely below her pillow and I am now wondering if her weeks breakdowns are due to loose teeth?!?!? I have to wonder.

On to Bailynn! She got her Medicaid approval TODAY!!! Woohoo!! That is right….it is finally fixed!!! Finally right!!! Now we just have to wait for the official letter, but her case worker lady is working on getting me a printed out letter so we can order boost before hand!! Okay, deep breath! I can’t believe it and I am still a little skeptical :). After everything, I think that is okay!!! Right now Bailynn is eating some scrumptious puree hotdog and enjoying a little one on one time with Mommy and Daddy.

Like I said it has been a crazy week, but here we are at hump day and Friday is on the horizon. Bob doesn’t have to work this weekend…we actually get some family time! Thanksgiving is around the corner…then Christmas…then 2009 will be but a memory. Funny how time just keeps ticking away.

Hope everyone out there is having a great week. I am still in shock Bailynn has Medicaid!!! November is coming to a nice close!

For Her. Bobbi


Numbers 6:24-26

The Lord bless you and keep you;
The Lord make His face shine upon you, And be gracious to you;
The Lord lift up His countenance upon you, And give you peace. (NKJV)

Men spend their lives in anticipations,—in determining to be vastly happy at some period when they have time. But the present time has one advantage over every other—it is our own. Past opportunities are gone, future have not come. We may lay in a stock of pleasures, as we would lay in a stock of wine; but if we defer the tasting of them too long, we shall find that both are soured by age. Charles Caleb Colton

*In a month of Thankfulness…I am thankful for all of YOU!!

November 24, 2009

Bailynn is not feeling well today. She keeps holding her head and crying…I think she has a headache. I gave her some medication. She also has thrown up twice :(. No fever and no other symptoms.

She has been grinding her teeth A LOT!!!! and I think from all the damage that she is doing to them that she may be giving herself a headache. I just don’t know how to get her to stop. Her OT suggested a vitamin supplement- we are going to try that. She has to STOP! It kills my head to hear her do it!

For Her. Bobbi

My cousin died this week and this article jumped onto the page. Helping Children Deal with Death. Inspirational Quote of the Day… (life is a gift!)


November 26, 2009

Happy Thanksgiving…we are all really full and all the girls have been happily in bed for a few hours.

I hope everyone else had a delicious Thanksgiving…I just love making all the food…really fun!!! The girls gobbled up banana pudding, key lime pie, and a smidgen of turkey 🙂 – oh, and we made lots of Mashed Potatoes (a favorite at this house!).

Then for a special treat Bob and I suprised the girls with the movie “UP” and we all gathered around the TV for some great family time!

My brother Jacob and his wife Leahanna came over with one of her clients through Bridges of Indiana (Leahanna and Jacob are caregivers for special needs children and adults, big thanks to Bailynn for that) also, my great friend Amanda and her kiddos Ali and Jude rounded out the table. I have to say it was the best

Thanksgiving…great friends and wonderful family make the day all the better – wish my parents and bro Ben could have been her though :(…will see them tomorrow.

We are decorating for the wedding and then we have a funeral at 1:00 (my cousin passed away earlier this week). It is going to be a long day, but I will need to work off all the food I consumed today!!

I hope everyone out there had a wonderful Thanksgiving and is enjoying the Holiday Season…and for all you brave souls heading out at “crack of dawn” to shop – be careful :)!!

For Her. Bobbi


November 29, 2009

My brother’s wedding was great yesterday. We had a really long weekend and we are all working hard to recover.

My head feels like it is going to split open…Isobel and the Twins have been running fevers today. I think it is from not getting enough rest over the last 2 days. Lila is having a really hard time sleeping.

Tomorrow starts another week and concludes November – unbelievable.

Bob is off all week! He has a “honey-do-list”, but will still have lots of time to play with his girls and enjoy sometime with our family.

I hope everyone else’s Thanksgiving Holiday went well! Here comes December :).

Love and Happy Holiday’s to all….For Her. Bobbi

Letters to Santa raise money for Make-a-Wish!!!


December 5, 2009

Due to extrem sickness this week, I have not made the time to get on here and update our well being.

Isobel missed three days of school this week with continual fevers and coughing. She is doing much better now and returned to school on Thursday with much enthusiasm. We all went and had lunch with her at school and the girls even got to run around on the playground with her (it was COLD!!).

The twins ran fevers right along side Isobel, but somewhere when Isobel cut off from being sick – the twins started hacking like seals!! Lila sounds horse and awful and Naomi is coughing so hard she gags. We intend to take them to the “after hours clinic” tomorrow morning and see if there is anything that can be done to help.

Bailynn hopped on the sick train Thursday and is full of snot, coughing, generally grumpy, and not eating well. She however has not run any kind of fever and seems just generally angered by congestion. She can’t really take anything for congestion due to seizures…so she suffers more than the other with it. She does have a lovely Vapor Rub smell though :).

Me….yes….me. I had to go to the doctor yesterday. My gland under my left ear is ENORMOUS!!! I feel awful and now am on a 10 day run of antibiotics for a severe sinus infection YAY!! uh, NO!!! I am also taking sudifed and using a nasal spray. I was told to take Claritin as well, but it scares me to combine that many medications (I don’t normally take any kind of medication).

Bob has had the whole week off to spend time with use and get projects done around the house….We have coughed and sneezed on him and generally been ill company (literally!).

Oh, funny story about Bob though (and it isn’t about being sick, which is good!!)….When Bob takes off (last time that was scheduled was for Bailynn’s surgery but he took his laptop!) he puts a “I am out of the office” email into his program so people know he is not there. He had not used this program since we had the twins – almost 2 years ago- well he didn’t really look at the message, but put it into action. What Bob didn’t realize is that the message read that he was taking the week off the care for his newborn twins………..He got calls and emails in curiosity as to how no one knew we were expecting AGAIN!! and if he really had 7 children now!!! It was HYSTERICAL!! Nope, just the five (not that people don’t already find that CRAZY!!). Anyway, he says Monday should be really interesting when he has to explain the miss-communication in the number of children we have :). I can’t wait to hear what people have to say!!

Today we are trying to hold everyone together with sickness and hoping tonight bring less coughing!! It is like a symphony of coughing throughout the house :(.

I hope everyone has enjoyed a healthier week. Pray that Arwyn remains well (she is the only one that has managed to stay healthy!!).

Here are some links to my latest articles… a lot to do with Christmas! It is on it’s way!

The Crippled Lamb Three gifts for Christmas

Christmas gift ideas for Children ages 0-12 months

For Her. Blessings to all! Bobbi


December 13, 2009

Bailynn had a rough Saturday with throwing up and gagging a lot. She never ran a fever or anything else – just her tummy was upset. Today was better, but she still pushes food away. Here is hoping the week will be good. We do head to Indy on Friday for Bailynn’s sleep study that we have been waiting so long for. She goes in at 8:30 pm (Indy time). Thankfully the Colts are not playing this weekend and I was able to get the girls and I a Hotel room; Bob will be staying in the Hospital with Bailynn. I will let everyone know how it goes. We are really looking forward to getting some answers – she is going “AHHHHHH!” in her bed right now! Hope everyone had a great weekend! Almost forgot…Bailynn’s Boost finally got approved and everything through Medicaid!!! I can’t believe it! So excited. Thanks to all the people who have been helping us to get Boost over the last few months for Bailynn – Your generosity have been a lifesaver!!! Big Thanks especially to Peggy and her mother!!

For Her. Bobbi

Two Horses Author – unknown

Just up the road from my home is a field, with two horses in it.

From a distance, each horse looks like any other horse. But if you stop your car, or are walking by, you will notice something quite amazing…
Looking into the eyes of one horse will disclose that he is blind. His owner has chosen not to have him put down, but has made a good home for him.

This alone is amazing.
If you stand nearby and listen, you will hear the sound of a bell.
Looking around for the source of the sound, you will see that it comes from the smaller horse in the field. Attached to the horse’s halter is a small bell.
It lets the blind friend know where the other horse is, so he can follow.

As you stand and watch these two friends,
You’ll see that the horse with the bell is always checking on the blind horse,

And that the blind horse will listen for the bell and then slowly walk To where the other horse is,
Trusting that he will not be led astray.
When the horse with the bell returns
To the shelter of the barn each evening,
It stops occasionally and looks back,
Making sure that the blind friend isn’t too far behind to hear the bell.

Like the owners of these two horses,
God does not throw us away just because we are not perfect
Or because we have problems or challenges.
He watches over us and even brings others into our lives
To help us when we are in need…
Sometimes we are the blind horse
Being guided by the little ringing bell of those who God places in our lives.
Other times we are the guide horse, helping others to find their way….
Good friends are like that… You may not always see them, but you know they are always there. Please listen for my bell and I’ll listen for yours.
And remember…
Be kinder than necessary-
Everyone you meet is fighting
Some kind of battle.


December 18, 2009

Live simply, Love generously, Care deeply, Speak kindly……

Leave the rest to God (Thanks Peggy!)

Isobel, Arwyn, Lila, Naomi and I are all sitting in a hotel in Indy after a long drive this afternoon/evening. Bailynn and Bob are at Riley Children’s Hospital getting settled in for a sleep study tonight.

Please pray for our family – the twins are sick with snotty noses and coughing. Bob has severe tooth pain and had to go to the dentist today. He is on some good pain killers an antibiotic. He goes to see a specialist on January 15 (in tooth ache time that is a century !!).

I would like to give the BIGGEST HAPPY BIRTHDAY to my Dad today!!! We love you dad/Grandpa :). Can’t wait to see you tomorrow night!!!

We are coming home tomorrow late morning and hopefully will be home late afternoon.

The girls are excited to be in a hotel and are begging me to go to the pool (I brought no swimwear are they nuts!!!). They are okay with watching Cartoons on Cable (which we don’t have at home) for now!!

I hope everyone is enjoying their Friday and the last weekend before Christmas!!!! I will update sometime tomorrow.

For Her. Bobbi


December 18, 2009

Bailynn was suppose to go back for her sleep study at 8:30 Indy time – it is now 9:45 and her and Bob are waiting in a waiting room STILL. He has had such a long day! This is not what he needed.

The twins are having a hard time falling asleep and Lila threw up. Nice. Here comes a long night………..


December 19, 2009

Bailynn did not go back for her sleep study until 11:30 at night!!!!!!!!! It kills me that this was for a child and the staff had no room prepared for her and my husband. Bob said Bailynn was very upset when all the probes were attached and ready to sleep despite everything. Bob didn’t get much sleep due to Bailynn’s continual attempts to remove all the probes in her sleep and the anxious beeping of the monitors.

Bob and Bailynn got back to the hotel around 7 am and crawled into bed. Everyone was exhausted from a long night. We finally made it home around 3 today (Bob was ill the whole way home). It snowed lightly the entire way. I drove. The girls watched movies. Our home never look more brilliant.

Tonight my parents are in town for the Holidays. We are celebrating my dad’s bday and Christmas. Our house is quiet….Bob and I are wrapping up unpacking and getting ourselves ready for bed.

Naomi and Lila are still sick. Naomi coughs so hard it hurts my lungs. I have given her a breathing treatment tonight and some medication. Somehow she sleeps through it all. Amazing.

Tomorrow is another day – here is hoping for a nap or super early bedtime. I am so glad it is Christmas break for Isobel!!

Peace to all….For Her. Bobbi


December 30, 2009

That which does not kill you makes you stronger. Neitzsche

Christmas has came and gone; along with all our decorations. I have been packing for 3 days now for our Disney trip – we leave this weekend!

The holidays are a blur and the girls loved every minute. The 3 story Barbie house that Santa brought was a huge hit and Christmas day was spent destroying the layout of the furniture that “Santa” had taken so much care to place :). We watched movies, stayed in our PJs, baked Jesus a birthday cake, and had a warm bubbly pot of chili all day! It was a great one.

Today is Bob’s last day of work till after we get back from vacation; that is long overdue!

I have to thank the Firefighters and Police Officers that have made this trip possible! I really don’t have the words to express our gratitude!!

Bailynn has seen the bags go into mom and dad’s bedroom. She has watched as I have picked through Capri Pants and Jeans to pack and she even got a sneak peek at some of the goodies for the trip :). When I tell her we are off to see Mickey Mouse and Cinderella’s Castle; she grins from ear to ear. It is such a joy to see!

I just have Bob left to finish packing and I need to finish cleaning up the house before we head out. The car ride should be fun and I hope to update and post pictures a bit while we are there!! I can’t wait to share our adventure with everyone.

Thanks also to Karen and Jeremy, who will be caring for our furry family while we are gone. They so appreciate your love and care!

We still don’t have news on Bailynn’s sleep study (it is the holidays). I am hoping to get info next week while we are in Disney.
For Her.
Bobbi


January 3, 2010

We are in Disney!!!!

We checked in this morning and headed to Downtown Disney to eat at Earl’s Sandwich shop (so yummy!!). Now the girls are all tucked into their beds knowing that in the morning they will get to see Cinderella’s Castle!!!

Bailynn hasn’t stopped smiling since we got here! I love her! She makes Disney twice as fun!! 🙂 Her favorite is the bus rides between things; no lie. I will post pics of her on the bus later. She is a hoot!

I will post other pics when we get some good ones and I hope everyone is having a great weekend.

The only problem I am having so far with vacation is worrying about my furry family left at home to be cared for by some wonderful family members (I still miss them though :(!!!) I am such a dork, I know!!

Again, I will post tomorrow night with new updates…right now tension is high to see Magic Kingdom in the morning!!!!!!!

Love to All….For Her and Biggest thanks to the Evansville Firefighters and Police Department! Bobbi


January 4, 2010

We had a great day in Magic Kingdom with the girls. The weather down here is not your typical Florida weather. Today the high was in the low 50s (still warm compared to home!).

Tomorrow we head to Epcot…for now we head to sleep :).

For Her. Bobbi

*Lila is not in the picture; she refused!! Naomi however kissed Minnie and Mickey on the nose :)!


January 6, 2010

We have had two more great days in Disney….it is soooo cold, but great. I never would have imagined having to wear gloves, coats, and layer upon layer in Florida.

We went to Epcot and Hollywood Studios the last two days…tomorrow we are back to Magic Kingdom and lunch at Cinderella’s Castle.

Bailynn has been doing great despite the cold and has only had a few seizures since arriving. She loves this place. Her smile is bright when Mickey Mouse is near by :)!!!

Everyone has to let us know how much snow we get at home tonight and tomorrow! Praying for my doggies that are such wimps and hate the snow :(……

For Her. Bobbi


January 10, 2010

Everything went fabulous in Florida at Disney. We went and went and went.

The girls got to see more characters than they could process and Lila and Naomi discovered a love for Mickey like their big sisters before them. We all walked and rode and ate till our hearts and bodies were content and tired.

It never got warm, but despite the cool temperatures; we have no complaints. Even after days of Isobel asking if we could swim; it finally sunk in that the cold was not going to permit favorable swimming conditions. It was actually 35 degrees in Disney when we left yesterday morning – hard to believe we were there just yesterday!

My favorite part about Disney, besides everthing, is the magic. The magic that twinkled in Naomi’s eye as she ran so fast to Minnie Mouse that she tripped, but got back up to hug and kiss her. The magic that made Isobel strut to a MariachiBand in Mexico. The magic that gave Arwyn tough feet and strong legs to walk and run through all the parks with little complaint because she was so happy to see the next thing. The magic that finally grabbed Lila on our last day in the park as she reached for Woody’s hand and we all held our breath as she stepped forward towards her first character. Finally, the magic that Bailynn gives with bright eyes, big smiles, and genuine giggles. Only Disney!

Yesterday we hopped in the “Rocket” around 10:30 am our time as the 1/2 marathon at Disney was dying down (pour soaked and frozen people) and headed north. It was sad to say goodbye to our home for the past week. We rolled into our driveway about 2:30 am (not bad for 5 kiddos right?!!). Our dogs bounded with joy at our arrival and the girls hugged and kissed them all. We found our pillows at around 3:45 this morning and by God’s grace the children slept to almost 10 and though the day has been long cleaning clothing, going to the grocery, and pulling ourselves back into reality; we relish in being home.

Disney was amazing…. “It’s kind of fun to do the impossible.” “When you believe in a thing, believe in it all the way, implicitly and

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unquestionable” – Walt Disney

Thanks again to the men and women that made this adventure possible…for my children…for my family…but most of all For Her – Bailynn.

Love to all…For Her. Bobbi


January 25, 2010

I put down my computer and spent time digging in closets, going through toys, and organizing our lives a little bit. It always amazes me how much 7 people can have and outgrown :).

Now I am back for an update…

Bailynn is doing well. She still has her usual trouble staying asleep and is grinding her teeth so bad that it makes my head hurt! I believe her sleeping trouble correlates with her teeth grinding! I wish she could wear a mouth guard :(.

Everyone is doing really well in our home. No sickness for a while now. We have somehow stayed free and clear (now that I say that I am sure we will catch something horrible!).

Isobel is still enjoying 1st grade and collecting boxtops. Thanks to Martha, Carol, and Karen for the latest batch. We are trying to round up the last boxtops from collectors; so if you have any please send them Isobel’s way (she gets so excited to receive them!). 5715 Upper Mount Vernon Rd. Evansville, IN 47712

Arwyn is going for early kindergarten entrance testing in March. She misses the cut off by 10 days and I know she is going to do great and love kindergarten in the fall!

Lila and Naomi have finally started saying a few words (only the best of course like poopoo!). I am looking forward to working on potty training in the months to come. I think I will try over Isobel’s Spring Break! I am ready to be down two diapered bottoms!

Bob became a Group Leader at Toyota as of today (he was a Body Weld Specialist). We are so proud of him and his great job at work! Even they think he is great ;).

I am starting up writing my articles again. I took sometime off like I said to organize and hang with my girls. I am ready to get back to clicking the keyboard!

I hope everyone out there is doing well also!

We head to Indy on February 9th and 10th (right after the twins turn 2; can you believe they will be 2 on Feb. 8th!?!?!?). Bailynn is seeing her Orthopedic Surgeon and Naomi is seeing dentistry for her 3 front teeth :E (Naomi smile). Then Bailynn goes to see her Pulmonologist on Feb 26th. A month full of travels (and to nowhere really fun).

Love to All…I will update again soon. For Her.
Bobbi


February 2, 2010

Bailynn’s page has had over 20,000 hits!! That is incredible!

What a weekend! The snow came and brought bright white piles of fluff to out backyard (love it when we can’t see all the “Charlie” holes in the backyard – he just won’t stop digging it to bits!).

The girls loved looking out the windows and dreaming of snowball fights – too bad they have no snow shoes or the proper attire for such events :(.

Isobel began coughing on Sunday night and woke up with a fever yesterday. She has been out of school now the last two days due to a virus. She acts fine, but looks worn out. She asked to go to the doctor – I know she feels bad when she askes that! I gave her some medicine and right now all the girls are napping.

The bad part is Bailynn has it too. Bailynn won’t eat or drink much at all. She is whinny and tired – oh, and grinding her teeth so bad she broke off a piece of tooth!!!! No Lie!! She goes to the Dentist at Riley on Wednesday (when Naomi goes for her three front teeth :E ). I am hoping they have some ideas; like rubber coating her teeth – what they can’t do that?!?!?! UGH!

Other than that the week is going. We have snow…we have sick…we have grinding teeth….we have another day!

Oh, and the twins turn 2 on Monday February 8th!!! They picked out Mickey Mouse plates at Target for their Birthday (they love Minnie and Mickey!!). They wanted to sleep with them the other night – FUNNY!! Then we leave for Indy on Tuesday!

I hope everyone out there is well!

For Her.

Bobbi

“The most important thing she’d learned over the years was that there was no way to be a perfect mother and a million ways to be a good one. ” – Jill Churchill


February 8, 2010

Happy Birthday to my girls Lila and Naomi!!!
The twins turned 2 today!! I can’t believe how big they are getting.

Naomi blew her candle out, ripped her present open with enthusiasm, and begged for more cupcakes. Lila grabbed for the fire atop her cupcake, became entranced with Naomi’s great gift opening skills, and barely ate her cupcake (she liked the Fazoli’s bread sticks more!).

We had a great day of celebration and now we sit back and watch the snow pile up outside with the knowledge that we are suppose to leave for Indy at 5 AM. Uh, SCARY!! I am getting ready to finish packing and hoping this snow goes away (I know – wishful thinking).

Bailynn is sucking down her evening boost as Bob and I read weather reports and try to make decisions. I wish we were already up there, but I am glad we are home and saving money right now.

Pray for us tomorrow. We are suppose to see Bailynn’s Orthopedic Surgeon and then we have Riley Dentistry on Wednesday! (Please let them have a teeth grinding answer!)

Here is to our crazy week. I will let everyone know if the trip gets to be taken or if it is a bust. The only issue right now is that I got our hotel off Hotwire.com and even if we don’t go – I can get no refund :(. GO AWAY SNOW!!! Do you think it can hear me? Probably NOT!!

I hope everyone has a great night. Keep warm. I will update tomorrow if I get a chance.

For Her. Bobbi

Nature has no mercy at all. Nature says, “I’m going to snow. If you have on a bikini and no snowshoes, that’s tough. I am going to snow anyway.”” Maya Angelou

Prayer Before Departing on a Trip

O God, You called Abraham Your servant out of Ur and kept him safe and sound in all his wanderings. If it is

Your will, protect Your servants. Be for us a support when setting out, friendship along the way, a little shade from the sun, a mantle against cold and rain, a crutch on slippery paths, and a haven in shipwreck. Bear us up in fatigue, and defend us under attack. Under Your protection, let us fulfill the purpose for our trip and return safe and sound to our home. Amen.


February 9, 2010

We made it to Indy. (giant sigh of relief!)
I am right now sitting inside a very quiet hotel room full of lovely sleeping ladies.

Bless our friends Mike, Peggy, and Ali. Ali had an appointment with the same Doctor Bailynn sees today and their appointment was in the afternoon while ours was in the morning. A leap of faith and an attempt to beat the snow made them drive up here last night and they graciously traded appointments with us. We were able to leave a little later and wait for the roads to be treated; and here we are!

The appointment went really well. Bailynn doesn’t have to see her Doc again for 6 months. The only thing he is recommending is Botox in her hips and hamstrings to try and help release the muscles. Bailynn use to get Botox years ago, but we had trouble with our insurance not paying for it. Now with the Medicaid Waiver I am going to contact the Doctor who use to do it. I am hoping this opens some doors for Bailynn to be able to straighten her legs better again – like pre rods!

Tomorrow we head to the Dentist and we are there ALL afternoon. Our first appointment is at 1:20 and the last at 4 (should be a loooonnng day!).

We have had a great time in the hotel…swimming (got to break out the new suits I had bought for the twins to wear in Disney that never got used)…we took a lap around the mall and got some grub….and now we are relaxing! The girls had a great time swimming with Ali!

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I hope everyone is enjoying the snow :/ (yuck!). I am so ready for Spring :). We will be coming home tomorrow night. I hope our drive goes as smooth as today’s. I really was impressed with how clear the Highways were!!!

Night to all and I will update either tomorrow or Thursday when we are home!

For Her. Bobbi


February 16, 2010

I finally have a moment to update.

We made it home with ease on Wednesday of last week. All the girls dental appointments went okay.

Naomi’s 3rd front tooth has to stay. The issue is that 2 of the front teeth are smaller in comparison to the 3rd. Therefor if one is removed it will not look balanced; and they will not fill in the gap. There is talk of doing a cosmetic fix to make 2 of the teeth look like one until her baby teeth fall out. As of right now they can only see 2 front adult teeth; that is not a guarantee that there are not 3 however. Naomi did great with all the specialist and dentist looking in her mouth and cleaning her teeth. I am so glad no one got bit! Oh, it is incredibly rare for a 3rd front tooth to pop through. The staff was mesmerized by her mouth – only my kids!

Lila has a rare fused tooth – why not?!?! That is right, were there should be 2 teeth Lila has one. This could only prove to be a problem apparently if Lila gets a cavity in the tooth. The tooth has an abnormally large root and could pose great trouble if it gets a cavity – again why not!?!?!

Bailynn’s teeth looked good and though she continues to grind her teeth to shreds the dentists have no solutions. (a deep sigh) The sound is so terrible, I know she has to get headaches from it, and she seems to not care! I can’t believe that they can remove almost the entire side of her brain, but can’t get her to stop grinding her teeth.

On to Isobel. Could any of my children just go to the dentist and have nothing!?!? Oh, yes Arwyn. Well, Isobel has something wrong with the way her molars meet in the back of one side of her mouth. The suggestion is to build up the molars to meet. My issue is that they are baby teeth and is it worth spending a bundle of money – my opinion NO! We are going to have molds done and see the dentist again on February 26th. I am hoping to get a better visual of the issue. For now she eats fine – for her – and complains little of the issue. Again, I wish to recieve more information before jumping into a huge expense on teeth that are going to fall out.

Arwyn is the only one who walked away with no strange anomalies in her mouth, no cavities, no bit issues, and a Hannah Montana sticker :).

The days have zoomed by since returning home and more snow has found it’s way to the ground again. I am so

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ready for spring! I spent my weekend feeling under the weather with a lovely cough and horse voice. Today I am finally feeling better.

I am still needing to contact the Botox lady and set up an appointment. I just have to find the number – it is in Bailynn’s giant book of info somewhere :).

Now onto my daily tasks of showers, vacuuming, and cooking. I hope everyone is enjoying the snow day (UGH, sick of snow).
Come on summer….please!

For Her. Bobbi


February 18, 2010

Bailynn has had a rough morning with seizures and such.

I am concerned that after having her Vagus Nerve Stimulator for many years, that the device has shifted up in her shoulder area. I called Neuro Surgery this weekend and as long as Bailynn is not in pain they are not terribly concerned, but it is visualy in a new location. We are going up to Indy again a week from Friday and I am trying to work out getting an xray to look at the location and make sure all the attachments are still on.

Bailynn is again due for a battery change (aka: new device) here in the next year or so….here is hoping everything is still okay with it.

For now I am trying to console her as she is very unhappy with her day as of right now.

On-top of all that my ear has been bothering me for the last few days. It squeaks…yes like someone stepping on popcorn – very uncomfortable. I don’t want to go to the doctor, but this is getting out of hand!

Now off to move laundry – ever overflowing in this home! I hope everyone else enjoys Thursday. It is almost the weekend, but Bob has to work :(.

For Her. Bobbi


February 25, 2010

I swear that this has been one of the longest weeks.

Bailynn has had some nights of great sleep and others, like this past Saturday, where she is up till after 2:00am. She is crazy :).

Today she is in a better mood then she has been in the last few days. She actually smiled at me instead of glowering at me (if that is even a word!).

I head to Indy in the morning with the girls. My sister-in-law, Leahanna, is being kind and joining us. Bob is going to work – so much to do.

Bailynn has her pulmonology appointment (lung specialist) and Isobel is getting her teeth molded. I don’t know how she is going to handle it. I will bribe with Ice Cream.

Then we will be coming back tomorrow night and yay for the weekend – boo that Bob has to work this Saturday again.

I will look forward to him having an entire weekend off sometime in the future! Hopefully it will come with warmer temps outside – I am so tired of cold!!! I can’t believe Isobel’s spring break is just a few weeks away also; not that we are going anywhere. I just am wanting some better weather to be able to do things with the girls during the day; maybe a trip to the Zoo.

I hope everyone else’s week is speeding along faster and better than ours. I will let everyone know when I get a chance how tomorrow’s appointments go. With the twins getting into EVERYTHING these days; sitting behind the pc is a challenge :).

For Her. Bobbi


March 3, 2010

Isobel lost her two front teeth last night :). She has a pretty toothless smile (and it is not even Christmas :(…). Today she was proud of her new found dollar bill from the tooth fairy and couldn’t wait to show everyone at school.

Friday went really well. The dentist had to give Isobel laughing gas to calm her. She has a really hard time with things going on in her mouth. Isobel will tell you certain foods “hurt”, she cries when a tooth is wobbly, and she is nervous when dentist come at her mouth with “chairs” for support and mirrors. The laughing gas helped a lot and she was so funny!!! She still talked way too much and some of the teeth they were going to seal didn’t get done because she would not stop talking!!!! Too bad laughing gas doesn’t help with that :).

The Dentist did show me what is wrong with her mouth. Her center line is off because her back molars are rolling in. If not corrected it will make Isobel’s jaw grow wrong and then she will need extensive repair (sigh). So we are waiting for all her permanent front teeth to come in (to get a better look at alignment) and they will then start working on molds and building up Isobel’s back teeth. We go back again in August for that…..

Bailynn saw her pulmonologist. He is so nice. He gave me the results of the sleep study in December. Bailynn’s oxygen levels are an average of 90% over night and she had 12 episodes of sleep apnea, but none lasted more than 14 seconds. The doctor, though impressed with her numbers, would not advise any medication to help her sleep. His fear is that the medication would suppress her breathing more and possibly kill her. Let’s not do that!!! I am actually relieved. I do not really want her taking any more medications on a daily basis. Though she does not sleep well, she is not hurting or crying when awake. He recommended wearing her down during the day :). How he expects us to do that…I am not sure!?

Friday we got home at a decent time and spent Saturday hanging out at the house and then hitting the grocery store for much needed grub. Does anyone else go through bananas and grapes like crazy?!?!? We do!!!

Sunday we spent celebrating Leahanna’s (my bro Jacob’s wife) Bday (which was actually Monday!!) We went to lunch, Target, and the Mall. The girls had a blast!! It was so much fun window shopping and walking around.

The week begain with Bailynn having a series of horrible bad seizures. She has a slight cold and it has thrown off her groove. Today she is doing much better and has had only one seizure so far. I am hoping the day brings less episodes than Monday and Tuesday (they were really really bad!).

Now the girls are all down for their naps and I am in route to move laundry and sweep floors; a mother’s work is never ever ever ever ever done!

Then we will be off to get Isobel from school and find out how the day went free of front teeth. I am excited to hear all about it. Than home for a night of rest; my favorite kind.

I hope everyone else is enjoying this first week of March (wish it was warmer!!!). As of now I don’t know when we head to Indy next except in August. It should be a nice break for a while. The only thing between now and then will be dealing with Bailynn’s migrating VNS.

Have a wonderful day! For Her.
Bobbi

“Anyone can give up, it’s the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that’s true strength.”


March 17, 2010

Is it really March 17th already? Wasn’t it just Christmas?!?!! Time sure flies right on by.

It is already Wednesday of this week and Spring Break is coming up. Isobel is very excited. Bob took off three days and despite all the errands and appointments we have next week – I am sure we will have fun! Here is hoping at least one day is Zoo weather….

Sunday we ventured down to TN to visit my parents and Brother. We had a great visit and the girls can’t wait to go back. They are hoping that next time the weather will be nice enough to go to Nashville’s Zoo – If you have never been and have small children you should try to go. They have an enormous playground, a carousel that puts Mary Poppins free range horses to shame, and nice flat ground to stroll around on (unlike Mesker :)!!).

Bailynn has had a decent week. She has been tired from the time change – Everyone has! We are such fall people! Why do we have to be so Springy and jump ahead an hour! I want to boycott :). Everyone has struggled with adjusting to the time difference this week. Today was the first day Isobel got up without much of a fight, but Bob was here because he is working a split shift today.

I am still waiting to hear from Bailynn’s Botox Neurologist. Ever since we went to see her Orthopedic Surgeon last month I have been waiting for an appointment. I am going to have to call again today to see what is going on. The Doctor is suppose to be at Deaconess next week and I was really hoping we could get in down here and not have to make the drive – the nurse was just afraid with all the muscle groups that the DR. would require us to head to Indy. Hmmm!? Doesn’t matter, just want to know what they are going to do at this point.

Okay, so here is to another week. I hope everyone is doing well as they can and adjusting to the new time also :(. Wish Springing Forward brought warmer temps!

For Her. Bobbi


March 23, 2010

I woke up this morning with the word “burden” ringing through my ears.
I can’t tell everyone out there how many times I have heard that word to describe Bailynn and her life.
What saddens me the most is that people truly believe this….that she is some how a “burden” upon our lives.

Well for anyone and everyone out there that thinks that –

They have never seen her smile at me as I enter her room in the morning.
They have never watched her squeal at “Charlie and Lola” as it starts on the TV.
They have never seen her reach and giggle for her boost.
They have never heard her scream bloody murder for her Caterpillar to shake and rattle till it is limp and lifeless.
They have never seen her put her hand out for a five or to catch the water streaming down from the shower. They have never seen her eyes light up as she enter the movie theater or knows we are going to Disney World. They have never experienced her….and how I wish everyone could see her bright shining life.

To me “burden” is the absolute wrong word, because the definition is:

an onerous or difficult concern; “the burden of responsibility”; “that’s a load off my mind” load: weight to be borne or conveyed
weight down with a load

Bailynn’s life is a blessing….just had to share :).
I had a bad week last week with our Case Worker through Medicaid…just wish others could see what mean things they say.

Have a wonderful Tuesday. We are enjoying are Spring Break by heading to Turnonies for Pizza this afternoon and then the Zoo tomorrow!!! Here is hoping the weather continues to improve!

For Her. Bobbi


March 29, 2010

Spring Break is over and the rest of the school year is steaming by. We had a great week relaxing, going to the zoo, and heading out to see “How to Train your Dragon!” (soooo good by the way).

Now it is Monday again. The girls are sick (Lila has been since the middle of last week). Isobel, despite some coughing and congestion, headed back to school and was ready for the week.

Now, today I am playing clean up from a week of fun at home activities. Next year we are heading to the beach for spring break. It will be our first time to the beach since Isobel was 18 months old!!! I can’t wait to see all the girls reactions :). So the countdown is already on to next years vacation!

Bailynn is doing well. If it wasn’t for a few terrible seizures I would say the last few weeks have been perfect, but this morning started with a bang. Bailynn woke up really early and has had a head full of yuck bringing about a lovely string of seizures…always happens :(.

The sun is shinning though and it is streaming through all the windows. I can hear the geese squaking as they fly over and I would love to go out and plant my garden (soon, but not today!).

Now if I could just find away to sit down and chill – not in the cards for today! So here starts another week and they just keep coming without fail.

For Her. Bobbi


March 31, 2010

It is Riley Walk-a-thon time. I have tons of fliers and we are accepting donations. If you would like to donate you can mail it to Bailynn @ 5715 Upper Mount Vernon Rd. Evansville, In 47712…checks made payable to Riley Children’s Hospital. (They are tax deductible!)

Bailynn has been the biggest group raiser for the last few years!! The walk is on May 1st!! If you would like to come just let me know and I will get you a pamphlet and give you the info!! Come support the hospital that have made Bailynn’s life possible!

Thanks For Her. Bobbi


April 7, 2010

I hope everyone had a wonderful Easter – we did!! Bob and my brother Jacob made Bailynn her fabulous Birdhouse/feeder hanger thingy for outside her window (that is the official name!). She loves it. She can lay on her bed and watch the birds eat and play. She gets a huge variety of different birds…they are all so pretty. She just watches them in awe – it is so sweet!!

Bailynn is going to get her hair cut today at 3:15. Our hairstylist is moving to TX and I am not sure what I am going to do after this. She is so good with Bailynn even when Bailynn is screaming at her and grabbing for the scissors! I wish her the best, but will miss her excellent work.

On another note, my mom had surgery on her jaw last week and is not doing well (well not as well as she should be). We are so worried for her and ask for everyone to please pray for her recovery to improve. I am hoping to see her in the next few days – I really just want to see her and I feel so bad that she doesn’t feel good! 😦

We went to kindergarten round up last night for Arwyn. It was great fun! She can’t wait to start school and we played pretend school for about an hour this morning (before the twins got too restless). She wants to go buy her school supplies right now! She is a hoot! I will miss her bunches next year, but she is going to do great. She knows a few kids starting with her in the fall; that is more than Isobel had.

I am loving the weather today. I really enjoy an overcast day full of singing birds :). The breeze is whipping through the wide open windows and I can smell my beautiful Magnolia Tree throughout my house! It is awesome – I love spring!!

Bailynn is still doing really well. Bob and I noticed her rods are still protruding and with the new found heat, they are getting a bit worse. I think it may be the added seizures from the weather change. Please pray for her back….we don’t see her Ortho Surgeon again till August (seems like forever, but will be here in the blink of an eye). Seizures are sporadic as well. Some days I will see her have none and then the next 4. It is so weird to me that they are so random. She is also suffering from Allergies right now (dumb pollen!) and mad at the world for her stuffy nose :).

I will try to write again soon. Things just get really crazy really quick. I hope everyone else is doing well and as always – I will be praying for your families too! Big love.

For Her. Bobbi

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go.Joshua 1:9


April 20, 2010

Easter seems ages away and here I am just now updating again. The days seem to rush past and the ability to open my laptop and push around on my keys is a battle between laundry, dishes, food, and playing barbie :).

Now I am sitting on my back porch with the bubble machine blowing an endless stream of bubbles and the girls are sliding, swinging, and blowing dandelions (Dad’s across america kring at this activity!).

The sun is so beautiful and the weather could be perfect for an outdoor picnic, but we are here in our backyard watching the dogs eat bubbles!

At least I have this bit of therapy for the day – I get to tell you a little about my Bailynn.

Her birthday is less than a month away (May 11th)- she will be 10 – double digits! If the doctor who told us the day she born that she would die could see her now, what would he say? She is sitting inside watching Sesame Street. I keep peaking at her – she smiles and with a side glance sends me away to watch her sisters. She is happier indoors. There is no breeze, no sunshine, no nature; her version of perfection :).

Her last few weeks have been filled with an abnormal increase in seizures. She has good days of sleep and bad ones. The bad ones are normally the worst seizure days. She is however still maintaining a decent (Bailynn decent) diet. Yesterday she had a stream of muscle spasms in her legs and spent most of the day crying. My heart was bleeding for her – such sadness. I wish so much that when she is in pain that I had some power to remove it from her. Today she seems fine. Happily sitting in her chair with her legs finally released from the scrunched up state. I was so close to calling the doctor, but today is a new day and things seem better.

We have stayed pretty low key around here doing much needed updates to my flower beds and laying an electric dog fence for our jumping dogs! I have planted my garden and I am hoping for big results. I have really expanded my crop this year (I so am not a farmer!!). I have squash, zucchini, broccoli, tomatoes, onions, cantaloupe, strawberries, grapes, all kinds of peppers, lettuce, cucumbers, green beans, and a blueberry bush. My hopes are high – please let me get something!! Oh, and I have a pot of herbs on my back porch – the rosemary smells wonderful!

Bob is taking a half day today and we are heading to speech therapy for Isobel in the afternoon. I am glad to get a little time of daylight with him today! We worked hard all weekend on our lawn and such and are in desperate need of a break – a good movie wouldn’t hurt either!

Bailynn doesn’t head back to Indy till mid/late May. She is getting Botox in her hips and upper legs (in hopes to relax her legs and let her stand more easily). The next thing is the Riley Walk-a-thon! She loves to participate in such a wonderful event!

Okay,the dogs are barking at our neighbor and the girls are wondering too far down the lawn to acquire new dandelions to blow! UGH!! I will have to leave you here and try to find time to tell you more later – may your day be blessed and get outside and enjoy this beautiful day! This is the day that the Lord has made!

As always, For Her. Bobbi


April 25, 2010

We were working on getting everyone ready for church this morning – Bailynn still asleep. Bob put her on the bed for me to give her a shower – she slept through it. I dressed her and laid her back on our bed – she is still asleep at 11:25 in the morning. She must have not slept at all last night. So here we all are dressed for church and eating lunch at home and getting ready to lay the other girls down for their nap – Church will have to wait till next Sunday.

What a morning………

Bailynn is still struggling to sleep and the twins have some major head congestion, but we started potty training the twins last week and Naomi has it down! No accidents. Lila is getting there with fewer and fewer accidents everyday! Potty training is never fun, but the results are worth the effort!

I hope everyone else’s Sunday is going a little more smoothly than ours. I just wish we could help Bailynn get some good rest – as for now she is catching up on her mommy and daddy’s bed :).

Best wishes and have a great rainy Sunday. For Her. Bobbi

Sunday clears away the rust of the whole week. ~Joseph Addison


May 10, 2010

It is Monday night and I am sitting here thinking about how my life changed 10 years ago tomorrow. Bailynn turns 10 in the morning – it is hard to believe she is that old :). I still remember the day she was born like no other day – her hair, her eyes, her sweet round face…then the terrible words Tuberous Sclerosis…and the rest of our life began there. The story starts there – Bailynn’s story – an amazing one at that!

Tomorrow we are going to take her to see Ironman 2 (she loves action films!), I am making Dirt Cake (yummy, and she can eat it!), and Bob has taken the day off for her! YAY!!! It is going to be a wonderful celebration for a little girl the doctors told us would not make it through the night ten years ago. The little girl that has withstood more surgeries than most. The little girl who is the light of my life and one of my greatest loves! Even in the moments when I thought our family could take no more; when everything seemed to be falling apart – she has survived. Her big smile and bright blue eyes are those of a warrior. I wish I could give her the world, but she has already given it to me. Who could have guessed that one little baby could forge the lives of two grown adults (and so many more) into what they are today. From the tip of her (typically messed up)

blonde hair to the bottom of her pink wheelchair wheels – I love her! She was the best gift ever on May 11, 2000!

Happy Birthday to my Bailynn!!! We love you so much and I am so glad we have had the pleasure of her life for the last 10 years. God is good – all the time!

For Her. Bobbi


May 24, 2010

My big 10 year old went to Indy on Thursday for Botox injections :).

Bailynn had Botox in her hips and hamstrings to help loosen her legs and help her to stand better. She did really well considering the size of the needle and the number of pokes she had to have! She is getting it done again in August and in October because the muscles are so very tight.

We don’t have any set in stone appointments until August in Indy. I am hoping we make it that long, but Bailynn loves to throw us for a loop!

Now we are gearing up for summer break with Isobel – her last day is Thursday. Bob has Friday off for his Birthday and Saturday is our 11 year wedding anniversary; so it should be fun weekend!!! Lots of celebration!

Bailynn does continue to do really well. She has been in a really great mood for days now! I think she knows Isobel is going to be home more with her – they are best buds! Bailynn has been more alert and her seizures, though harder when she has them, have subsided a bit in frequency. Her rods however look worse than ever. I showed them to her pediatrician and she wishes we were going to see Bailynn’s orthopedic surgeon sooner – Bailynn’s throwing of the loop! We will see how the next few weeks progress!

Arwyn got all her shots for kindergarten and all her paper work is turned in. She is ready to go and much more excited about buying supplies than Isobel ever was :). I am really excited for her as well! She is such a smart little lady and is enjoying Isobel teaching her a few sight words to read Charlie and Lola books!

Here comes Memorial Day weekend and the year is almost halfway through! Can’t believe it! I hope everyone is enjoying the sunshine (maybe not the HEAT! yuck!). Here is to another start of a week! Best wishes to everyone.

For Her. Bobbi


June 17, 2010

Enjoy the little things in life, for one day you may look back and realize they were the big things..

June has brought so many different events that my head is still spinning and it isn’t over!

Since I last wrote Bob and I have celebrated our birthdays, our 11th wedding anniversary, and we took a trip to Holiday World that was a blast!

My grandfather has passed away after months of illness, but he is free of suffering now and we laid him to rest last week just 2 days before my birthday.

Heat beats on us outside, but being the great mommy and daddy we are as an anniversary gift to ourselves and our family we got an above ground pool from Sam’s Club (the intex kind that you have to take down and put up every year); the girls are in love and we have swam almost everyday since we have got it.

Bailynn’s Botox has given her great improvement in range of motion in her legs, but she still hates to stand. I did get her to stand in the pool though – because she LOVES IT!! 🙂 Medicaid has suspended paying for Bailynn’sboost as we try to get deliveries scheduled for every month. I don’t understand why they can’t still provide it for her while we are waiting for this approval, but they won’t and we are now purchasing it out-of- pocket again! UGH! With little miss drinking between 5 and 6 a day now – it is not cheep! Her seizures are doing well withthe summer months upon us. With added heat normally brings added seizures and we are yet to see an outbreak of them (knock on wood!). She has been very alertand happy (even her pipes are working well! this is rare so it is a good thing!). I have been working hard with her trying to get her to hold her own spoon and maybe feed herself HA! She thinks I am crazy and chucks the spoon as far as she can; nice right!

Bob has went to night shift for the month of June (totally sucks!). This is only the first of many months to come on nights. He is going to be rotating shifts every month :(. Our sleep schedule is all messed up and I am running on fumes!!!! Even the weekends are rough with his schedule all mixed up; seems like the relief of day shift in July can’t come soon enough.

June is not over! My younger brother Ben gets married in a week and a day….makes me feel OLD! Our family heads to TN. next week for the event. By the time June is over I will miss it, but for now it seems like so much stuff has happened.

So now everyone knows why it has been so long since my last update. The world is spinning in circles and I haven’t had time to grab my PC and write about it. I have even been neglecting my articles as I try hard to adjust to the new way of life with Bob home (and sleeping) during the day, keeping the kids quiet, entertaining a seven year old who is use to school all day, swimming, funerals, weddings, and life……does it ever end?!?! I know – NO! I hope June has been kind to you. I hope the world stops long enough to grab onto it and enjoy the days…..I am working on finding my grip again. Praying for you – pray for us as well. Love to All….

As always – For Her. Bobbi

P.S. Thanks to everyone who sent us BoxTops over the last school year. Isobel so appreciated receiving them and in the fall I will have 2 little ladies wanting them! So please don’t forget to keep collecting them if you can!!! Thanks AGAIN!!

2 Samuel 22:33 It is God who arms me with strength and makes my way perfect.

“I know it seems hard sometimes, but remember one thing, through every dark night, there’s a bright day after that. So no matter how hard it gets, keep your chest out, keep your head up and handle it.”.


June 28, 2010

Boost issue is fixed! We have a few cases in the garage and thanks to Peggy and her mom we have some extra – Finally the world is running smoothly again :).

We had a great long weekend in TN. It was very hot, but lots and lots of fun. My little brother got married; the last of the three of us. It was crazy to see him up there and great all in the same breath. Funny how so many people ask me if Bob and I are “trying” for a boy when I had two little men who grew up right in front of me. They may not be my babies, but they were always my biggest loves! Everyone grows up right.(Big thanks to all our family and friends that drove and sweated for Ben this weekend. It was such a blast!)

Bailynn and the other girls had tons of fun in TN. We went to see the Parthenon, explored the garden in HEAT, we walked downtown Nashville, we swam, and we enjoyed family time! Bailynn endured the heat like a champ. Isobel and Arwyn did great, but told me “we are absolutely boiling!” Lila and Naomi suffered from sleep deprivation and napped like pros today! They were so funny when they saw their precious beds when we got home last night. It was like they had arrived at a magical castle made for slumber! 🙂

We got home super late last night and I have been unpacking *Blah* all day! 7 people to pack and 7 people to unpack – not fun! We had to restock the fridge and catch up on laundry. The dogs have laid around, the kids have played, and I just found a place to sit this late at night. Tomorrow will bring less things to do and I am looking forward to it. Now I am going to sit and write for a bit while the house is engulfed in silence; well there is the light clicking of the keys on my pc, but such a sweet sound it makes!

May this week be cooler, the days be full of fun, the nights full of rest, and may everyone get the opportunity to enjoy it! Best wishes and love…

For Her. Bobbi


July 26, 2010

The summer is swooshing by and here I am almost a month since my last post and full of information and prayer requests.

We head to Indy on Monday (August 2) and we have appointments Monday and Tuesday of next week. Bailynn will see her Neurologist, Ophthalmologist, Urologist, Orthopedic Surgeon, and get Botox again. We haven’t been to Indy since May and it feels like a lifetime!

Okay, so here is the biggest news I got, and bare with me as I try to explain. In May, Bob and I made a decision to take Bailynn off her seizure meds – crazy right?!!? Okay, let me explain – we did not rip her off her meds, we slowly removed and re-dosed them until they were gone. Funny, she has had less seizures and they are much lighter (in fashion) than her typical medicated seizures! Who knew!? Don’t ask me why. I don’t know why we took her off. It just seemed ridiculous that she had been on Phenobarbital since age 2 months, still had 2 seizures a day, and was on the exact does she took at 15 months of age. The Lamictal she was one can damage your liver and that is one good organ that she has. The results – Bailynn had one seizure in TN for my Brother’s wedding around June 25 and did not have second one until last Thursday. YEAH! Um, what were the drugs doing?!? Now she is going #2 on her own, she is SLEEPING!!!!, she is eating, she is more alert, she is happier, and I sit and wonder how? Now she has been medication free for some time and like I said we head to Indy on

Monday. By the way, we haven’t told her Neurologist that we have done this -I have talked to her pediatrician and she thinks that we just need to tell her doctor and see what she says – I think she will tell us to find a new doctor. We may be looking for a new, open minded, doctor.

So you may ask if we are afraid of seizures affecting her now that she is not on medication. Okay, a few years ago Bailynn had a VNS implanted. This expensive little device is attached to a nerve and sends electrical pulses to her brain every 4.5 minutes to help disrupt any firing that would cause a seizure in her brain. So in theory she can never have a seizure that lasted more than 4.5 minutes and her emergency (not coming out a seizure medication – that is dispensed rectally – calls for use after the seizure has lasted more than 5 minutes). We also have a magnet, yes like you hang on the fridge, but more powerful, that we can swipe over the device to stop a seizure. This magnet has never fully worked in stopping a seizure in progress until this past Thursday. The unmedicated, happy Bailynn was seizing and swiped and seizure stopped on a dime – huh! This crazy pricey device does work – just not on overly drugged Bailynn!

Okay, so that is the biggest news to date. We have a happy unmedicated 10 year old and a trip to Indy to explain ourselves – PRAY!

Next. Medicaid. Have I mentioned how frustrating working with our government is!?!?! There were issues with papers, hopefully all is taken care of, our caseworker tries, but fails most of the time, and we are at wits end with the whole process!

Everything else is doing well. The girls are getting bigger and our pool is a blessing during this hot summer. We have experienced a change of life with Bob rotating shifts and are about to have 2 little ladies head to school on August 11 (which is also Arwyn’s 5th Bday). It has been a summer to remember. Now that I have hopefully caught everyone up on our events I hope all of you are doing well also! Life is so short. Live it strong!

For Her (for the longest time in her life unmedicated) Bobbi


August 2, 2010

We are sitting at Riley waiting to go back for Bailynn’s eye appointment. She already had a renal ultrasound and Botox in her hamstrings and hip flexers. She did well with minimal crying. Next we have neurology and then off to the Hotel! Girls are having a great time making new friends in the waiting rooms ). I will update later as to how things went.

For her Bobbi


August 2, 2010

Bailynn threw up Everywhere when the eye doctor’s nurse put eye drops in her eyes!!!!! Nightmare trying to clean her up with paper towels and hand soap – almost done. Eyes are dilating just waiting to go back and look inside her eyes.


August 2, 2010

We made it to the hotel in one piece :). All of Bailynn’s appointments went really well. She is asleep right now on the sofa in our hotel room after a rough day.

We were able to talk to her neurologist and tell her that Bailynn was not on her medications any more. We told her all the benefits we see and how happy we are with the current situation and she is pleased – Thank you for the prayers! The only current issue is that Bailynn’s VNS is 7 years old this September (their life is between 5-10years). They are sending of diagnostics to find out how much life is left in the VNS and when the surgery to replace it should be. We will find out in the next few weeks.

For now we are going to seek out some supper and hit the pool at our hotel. By the way Peggy – the Comfort Inn is super nice!!!!

Tomorrow we are on our way to St. Vincent’s Children’s Hospital for a 7:45am appointment. Looking at her rods and her legs; hoping everything is still going well.

I will update again soon and let everyone know what is going on; for now – all is well!

For Her Bobbi


August 12, 2010

Arwyn turned 5 yesterday and started kindergarten! It made for a great, but long day.

Isobel headed to the 2nd grade and could not be happier to be back in school. She has been asking to go back all summer!

The twins are confused in this new shift in life and ask where Arwyn and Isobel are when I say school they turn their heads sideways in question. I will say they have found the toy room a lot more peaceful and all toys accessible with their big sisters gone :)!

Bailynn is doing great. An update on seeing her orthopedic surgeon is that she is still too skinny and the rods are still very prominent, but there is little they can do about it :(. The only option that the doc had to offer was in the years to come removing the rods again 0 uh, NO! at least not if she doesn’t have to have them removed – she has been cut enough!!!!!!!!!!

Bob had the last two days of work off, but headed back today so I am playing major catch up in the laundry and house work department and next week he starts nights again for four weeks :(.

I hope everyone else’s families are doing great and with a start to school (which came too soon) I hope the fall sweeps through with cooler temps! [side note to God: You may skip out on the ice and snow this season – I am good with it 🙂 Thanks!]

Love to all, For her. Bobbi

Nothing is as far away as one minute ago. Jim Bishop


August 17, 2010

I called Riley yesterday for an update on Bailynn’s VNS. We are waiting to hear about the stats on it’s battery life and whether or not she will need surgery in the coming months to replace it. The Nurse has not gotten back with me yet so I assume that they do not have the information.

Bailynn has been such a hoot the last few days. With the other girls gone and the twins running around playing; Bailynn has found the large TV in the family room free to watch her own films. She is enjoying the simple pleasures of Baby Einstein’s, classic Disney films, and Musicals. She is so funny. Oh, and I have to share that the last few times that I have vacuumed the rug in the family room she has lifted her feet out of the way for me. I find this super awesome and funny, because I am a vacuum aholic! (I hate dog hair!!!)

I also gave Bailynn the choice between 3 movies; Wall-E, Enchanted, and Mary Poppins. She selected Wall-E. In an effort to really see if she had “chose” it I moved the disks around. Again, she picked Wall-E. One more time for good measure and she picked Wall-E again. When I put it in the DVD player she squealed with delight and my day was made by my big 10 year olds choice to watch her favorite little robot!

We have also been working very hard on getting Bailynn to feed herself. I try to make her use her own spoon at least once a day. She is great at putting the spoon to her mouth – I am not saying it is not messy, but she has issues with reloading the spoon – that takes a lot of skill.

Along with that I know I am well overdue for some new photos, but honestly our dear laptop died last week – RIP Dell Laptop “You were a great laptop and then one day you failed me and croaked leaving me with a plethora of information on you and a scramble to find someone to save it (I did find someone and whew! All info was saved!). We will miss you.” Now I am working from our new laptop and it does not have a SD Card port on it and I can’t find my camera cord anywhere – of course! So, I ordered a little thing that looks like a jump drive that you can put your SD Card into and it should be here next week. Then, I can load some new pics of the girls. For anyone out there that is on Facebook, I also have a ton of pics on there of all my beautiful ladies! The new computer thing has really thrown me for a loop though. I am learning a new operating system and dealing with extracting and saving properly our important information. Hopefully next week I will also receive in the mail my new software for writing word documents so I can get back to my articles. I would like to give a huge thanks to Ashton Computers on Evansville’s Westside for saving all my photos, videos, and documents off our deceased Dell – they were great!

I will let everyone know when there is a new update with Bailynn. For now everything is in their hands and it is the wait game.

Love to all. For Her. Bobbi


September 8, 2010

Bailynn will not have to have surgery till next spring. Her VNS has enough battery life to make it through the winter and flu season! This is excellent news for us and I am glad she will not have to have anything done any time soon. Her seizures still maintain a less frequency and duration mode. She is still doing well practicing eating and with her sleep and attitude. Right now she has a bit of a head cold and is struggling with congestion, but it is all in her head – where it better remain! All the other girls are doing well. Arwyn and Isobel are feeling a bit under the weather, but I think it has a lot to do with the weather changing, sinuses and allergies.

Our family is having a bit of a rough patch right now and would really appreciate your prayers. There is a lot of un-needed stress and complications – life right! Please just keep us in your prayers as we wish for September to fly bye a bit fast and skip forward to better/easier days. It has just been a hard few weeks and it is not getting better. It all started when our computer died and than I found my printer is so out of date that it is not compatible and the ink is no longer sold so we will have to replace it soon (I found a new one I want, but it will wait – for now I am dealing best I can with no easy way of printing), no lie the day after my last post and telling everyone how Bailynn lifts her feet for the vacuum – the vacuum’s handle snapped right off and I had to go buy a new one! It has just been one thing after another and we could really use a break from all the crazy and especially the crazy that gets to be expensive! There is so much more, but I will not get into it on here.

Another day and I am so wishing it was Friday! My best to all of you and your families. I am hoping your leap into fall has been smoother than ours.

For Her. Bobbi

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” ~ Albert Einstein

“We must accept finite disappointment, but we must never lose infinite hope.” ~ Martin Luther King

“In three words I can sum up everything I’ve learned about life. It goes on.” ~ Robert Frost

“Don’t take life too seriously. You’ll never get out alive.” ~ Bugs Bunny


September 20, 2010

It was 9 years ago today that Bob and I with our parents and siblings sat in a waiting room while Bailynn had over 2/3rds of the left side of her brain removed. It was not until over in the wee A.M. hours that we saw her again with her eyes open and focused on us for the first time.

Thanks to Dr. Jodi Smith and the Riley OR staff that brought our baby out of her seizure coma and to us on that day 9 whole years ago – seems like it was just yesterday.

For Her. Bobbi


September 27, 2010

Things I have learned from Disney – I can fall in love in one day, I can break into song anytime I please, Animals can talk (they just only do it for Princesses), Magic is real, Fairies paint our leaves for fall, Fish are very musical, Swords are just waiting for me to pull them out, Every good story has a hero and a villain (the hard thing is figuring out who is who),If an elephants ears are big enough; it can fly!,The best way to travel is by coach, The fastest way to travel is by carpet, Toys come out and play when we are not around (that actually explains a lot!), Robots are super cute, I could turn into a frog if I am not careful about which frog I kiss, Beasts could be handsome and rich, Most Princesses and Princes (oh, or fish or deer) only have one parent and they lost the other tragically, but mainly Disney has taught me to Dream Big and laugh at the thought that fairytales aren’t as simple, but possible!

There are good days and bad ones, but everyday that Bailynn smiles makes my heart leap and today she has laughed and smiled A LOT :)!

For Her. Bobbi


September 30, 2010

This week has been really eventful. All of the girls have ended up with Strep Throat and we had to make a trip to the Doctor. The fridge had to clear space for the multiple bottles of bubble gum pink medication, but the days get better as more and more doses of antibiotics are taken. Bailynn of course had to have the worse case.

The weekend will be a time of much needed rest and here is hoping for a relief from whiny little ladies :). I need to go and get some ice cream for them, but haven’t had the chance (what a bad mommy I am LOL).

I hope everyone else’s week is less – less sick – less whiny – less crazy :). Enjoy the weather!

For Her. Bobbi


September 30, 2010

I know – 2 posts in one day- so unusual, but I had to share this pic of Bailynn :). She cracks me up with her brattitude!! Love her!

November 1, 2010

I completely skipped over October – How dare I!!!

Isobel turned 8 last month (on the 11th) – really growing up too fast! The leaves changed amazing shades of orange, pink, red, and brown – than vomited all over our lawn. It really is pretty though I promise :). The weather has been from too hot to too cold in 24 hour spans. Now we have entered into November. Say it isn’t so!!! The trees and lights will go up in a matter of weeks for the Christmas Season and I am still working on swallowing it all.

So today I sit here in need of my semi-forgotten therapy, my way to release to the world all the things that go on in given day at the Hammonds’ house.

I have terrible bad bronchitis and my lungs rattle and wheeze with each breath. I am on steroids, antibiotics, and have a fresh inhaler to help me breath. My voice sounds like a Jazz singers dream come true and some how I still fell at ease behind these keys telling all our friends and family about it.

Bailynn has had a rough few last days. She was sick on Friday and has since had 3 “yuckies” aka seizures. She has not been sick since Friday, but something just isn’t right.

Naomi fell today on the playground of Isobel and Arwyn’s school while running towards Bob (we went to visit for lunch and recess). Bob took her to the ER. She is fine, but has a most impressive knot on her forehead! She was more upset about leaving the school than having a large dent in her head! She has had a long night and I have periodically went and woke her up from her sleep to check on her. Makes my heart break, but tomorrow when it is black and blue it will send fear to all onlookers. My last check is in 5 minutes so I better type faster!

October really is over?!

We went to a beautiful wedding this past weekend; Bob’s cousin Kathryn got married on Saturday. The girls ate up every moment and Bob and I enjoyed watching their enthusiasm while I pondered what their wedding days will be like. They are all so different and their moments I can see reflected in their personalities are a wide variety of likes and dislikes that they already display. Isobel goes more towards the over the top princess look while Arwyn is a little more reserved and classic. Lila and Naomi still fall in that “oooh, shinny!” category of things they like!

Than the first daughter dance came on – a moment that I remember well with my dad and how I still regret the song choice (because the one I wanted the DJ didn’t have), but a moment I will never forget. Kathryn’s song choice – or maybe her dad’s – was Cinderella’s “A Dream is A Wish Your Heart Makes.” To me it is Bailynn’s theme song. A drip of her past life with a whole brain leaked into my thoughts as the song danced through the reception. I saw Bailynn laying so tiny in a crib at Riley with wires and lights attached to every end and my soft song of Cinderella to her “No matter what your heart is grieving if you keep on believing. The dream that you wish will come true.”

It is not often that I dwell on what Bailynn will not do in life. A long time ago I made it a point to only think of what she can and does do, because she has her own way of going through life, but that moment caught me. I could see her dressed in a long white gown dancing with her daddy – the moment. The moment she will never get. Hard. Really hard. God’s plan I told myself. Her song will be reserved in heaven and Bob and I will enjoy our dance there with her. He is blessed with four other beautiful ladies and their future moments, but there will always be that thought as little as it may be of how her day may have been…

Okay, so now that my tears are flowing free and my last check has snuck up on me I will have to leave October behind and move forward with November. i promise to write more. Not just for everyone else out there, but for me. To share bits and to share her moments. Her special Bailynn moments with you.

Thanks love to all.

For Her. Bobbi


December 9, 2010

December has brought ear infections for all three older girls, I have broke my big toe and it HURTS!, Naomi has been coughing like a seal, and the cold air has taken hold.

Though Christmas is upon us and lights twinkle from everywhere, I am so ready for spring! 🙂

Bailynn has been doing well. She hasn’t been to Riley in a while, but after the first of the year we head up. Jan 3rd all the girls have dental appointments and then on Feb 3rd we talk surgery with her Neurologist and Neurosurgeon about replacing her VNS.

Did I mention it was COLD!

Bailynn’s biggest complaint over the last few weeks has been a never leaving cough and bad ear infection. She is on her second round of antibiotics and if we could just never leave the house to get germs I would be good with that ;).

Arwyn and Isobel have taken their turns on the ear infection train and we ended up at our pediatrician’s office 3 times in 11 days! Everyone is wrapping up their medication and I am trying to rest my toe :(. Arwyn sat with me at the MEC for hours on Saturday waiting to have it xrayed. She didn’t want mommy to go alone (she is my sweetie!) It is fractured and it is supposed to take about 2 weeks to heal. All of my shoes hurt to wear!

I hope everyone is having a Merry Holiday Season. May the sickies stay far away from you and your families (and don’t break any bones!). Our December has hit with a bang and hopefully as we get closer to Christmas morning the kids will be well and the magic of it all will wrap around us.

For Her. Bobbi


December 24, 2010

Merry Christmas to everyone out there!!! Sent from CaringBridge iPhone app


January 27, 2011

Snow, Snow, Snow!
I feel like the snow will never end and I wish for warm temps and sunshine; as do all the girls!

Well, another month has slipped by and Bailynn heads to Indy next Thursday, Feb. 3rd, for scheduling of her VNS replacement surgery. I believe we are going to shoot for the beginning of April so that she is good and healed just in time for the pool to open and summer to hit in full force and post Spring Break! The surgery will bring some complications as Bailynn requires a full body MRI in-between removing and replacing the VNS. The only idea that may help in modifying this is to do the MRI prior to the surgery (a MRI fries out the circuitry in the VNS) and just removing the dead device, but her surgeon is unsure the consequences of doing so because is it ill advised by the company that supplies the VNS. Nice! We will hash it all out next week and so far no SNOW for next Wednesday or Thursday so that is good and Bob is taking off and going with the girls and I!

Today Bailynn is happily watching Barbie and the Diamond Castle and enjoying her overflowing bucket of toys! We have already practiced eating. She is doing well with putting food into her mouth with a spoon wearing a lovely hand splint to hold the spoon that was made by her wonderful OT. She is still not sure of the reloading bit, but we are working on it! She did need a shower after the ordeal because Chocolate pudding was EVERYWHERE! 🙂 (her shirt had to soak in the sink for a while even though she was wearing a bib!)

I hope all is going well for all of our friends and family out there as January wraps up and February hits us at full speed. The twins turn 3 in just a little over a week on February 8th. I just can’t believe it! I just can’t!!! Where did it go? They are hysterical and full of attitude and personality. They are the best of friends and at moments, brief moments, the worst of enemies :). Naomi is a spit fire and thinks that everything should be her way and she rules the house; she gets everyone in trouble – really! Lila is super laid back and not very friendly to people she doesn’t know well; so she kind of comes off as a snob, but is so loving and sweet :)! Isobel and Arwyn have been giving ideas for birthday gifts for the twins – all things that they want of course! So funny! My girls just keep getting bigger and bigger!

On a side note, Bailynn will be turning 11 this year on May 11, 2011. We will be having a party of some sort; more to come when it comes closer! Everyone will invited even those of you who have never met her; you will have the opportunity! Bailynn’s 10 year anniversary of her brain surgery is this fall also! 2011 is shaping up to be a big year!

Love to all!

For Her. Bobbi


February 2, 2011

We head out at 4:15am for Indy. I have been asking anyone and everyone about road conditions and for the most part everyone says main roads are passable. So off we go. Pray for our safety and that Bailynn’s doctors are able to get to the hospital. Our first appointment is at 10:00am Indy time (so 9am our time). I would be very disappointed if we make it all the way up there and don’t get to see her Doctors! I will let everyone know when we arrive there safely!

For Her.

Bobbi


February 3, 2011

We made it to Terre Haute – lots of ice here, but roads are passable! Will let everyone know when we get to Indy!

For Her bobbi


February 3, 2011

We made it and saw the doctors. Surgery will be in April. Dr. Smith (neurosurgeon) is very concerned that Bailynn’s rods are going to come out, but her orthopedic surgeon is in Bloomington today :(. Off we go – now to get home.

For Her Bobbi


February 18, 2011

I will know for sure later today, but Bailynn’s surgery will either be Friday April 1 or Monday April 4. All the approvals for the surgery have come back and they are just trying to coordinate the MRI and the OR.

For Her Bobbi


February 23, 2011

The surgery is all set for Friday April 1st. Bailynn will go back for her MRI at 7:30 am, but we have to be at the Hospital at 5:30 am. Than depending on how the surgery goes she may get to come home that evening or just have one night in the hospital. We suspect she will be released that day, but may just get a hotel for either way to not have to drive so far right after.

As always, I will let everyone know how things go. The surgery has already been approved through insurance now we are just waiting for Medicaid’s approval also to pick up the copay for it.

For Her. Bobbi


March 31, 2011

Surgery is tomorrow…

After speaking with Bailynn’s Neurosurgeon and Bailynn’s Neurosurgeon speaking to a slew of representatives for Cyberonics (that makes the VNS); Bailynn cannot have an MRI. Under no circumstances can Bailynn enter a MRI machine because the leads attached to the Vagus Nerve in her neck could over heat and “burn” her from the inside. There has been a lot of discussion over the last few weeks as to how to get by this, but Cyberonics says simply – No! The only true way to be able to put Bailynn into the MRI would be to fully remove every bit of technology from the current VNS from her body, but her Neurosurgeon says this is impossible without potentially hurting for her. The leads and current device have been in there for so long that her nerves and the scar tissues could create obstacles that could lead to nerve damage and such if removed. Therefor, the MRI is off and Bailynn will “just” be having the generator to her VNS replaced tomorrow. We do not have a time. Day surgery is supposed to call us this morning, but I think I will give them a ring here very soon. Depending on how the surgery goes we may have to stay overnight tomorrow in the Hospital, but most likely she will be released tomorrow evening and we will head home.

Please send big prayers her way. Bailynn spent a good part of Tuesday crying and acting funny. I gave her an enema in hopes that it would relieve any distress or discomfort she was having, but she was still super cranky and spent most of yesterday in her bed watching movies happy to not be moved.

Her rods still dominate her back and the skin looks stretched with some break down over a small section. We continue to watch it with fear that something is going to go terribly wrong, but taking great care and cation to protect and ease the area is keeping it in check for longer than we expected.
I will update with times and surgery status as soon as we know stuff, but for now this is all we got :).

For Her. Bobbi


March 31, 2011

Okay, Bailynn has to be there at 4:45am Evansville time and surgery begins at 6:30am. We will be driving to Indy today and staying overnight. I will update in the morning.

For Her. Bobbi


April 1, 2011

Bailynn is back in surgery right now. She was half asleep this morning; as were the rest of us ;). The OR is blocked for 3 hours, but she should be finished well before that time frame. I’ll update with more info when we hear from the nurse.
For her

Bobbi


April 1, 2011

Surgery began right at 8:00am Evansville time. The nurse said anesthesia went quick and easily. She only has an iv in her left hand and no cath- per our request. Actual surgery should only take an hour than there will be closure and recovery. So far so good.


April 1, 2011

She’s out!!! Surgery went perfect. She will be in recovery for the next 45 min or so and then they will determine when to release her to go home. Right now she is being given a muscle relaxer and pain meds. Pray she wakes up quickly and can tolerate some drink – this will expedited her release and our ability to get her home to her bed! Then the weekend will be filled with movies and relaxing at home.


April 1, 2011

I saw her! She sucked down a boost, smiled, and rolled over to go back to sleep- So Bailynn! Bob is with her now and we are waiting for her to be moved so the girls can see her too.


April 1, 2011

We are just south of toyota; so close to home. Bailynn has slept the whole way. I have to take a picture of her bandage, they made it look like a flower :). We are going to stop and grab stuff to make pizza and watch movies tonight! We are all ready to be home. A 3:00am start is killer. I’ll let everyone know how the night goes tomorrow.

For Her Bobbi


April 4, 2011

The weekend went fairly well for having surgery on Friday. The most major issue is that she had a reaction to the adhesive on her bandage and has a few blister around the incision now. She is very unhappy, but eating and such. She is very angry that the ouch is under her good arm’s armpit making eating and playing difficult! Now the bandage is off and she has another full day of rest in front of her!


April 5, 2011

Bailynn had a ouchy morning. She started crying a little after 4 this morning and really hasn’t been happy since. She has watched movies and played toys, but she is just MAD at the world still. The irritated area around the incision already looks remarkably better and if she would just stop trying so hard to put her arm over her head, cause she likes it there, I think she would feel better.

Lila and Naomi has been visiting her in her room and telling her to “soosh! it’s k bailynn it’s k” translation “be quiet I can’t hear Tangled and your fine!!” they all make me smile!!!

I need to head back to cleaning and laundry – they never end. If only dinner would cook itself and the laundry would fold and put itself away :)! Nope – so off I go to make the magic. Another day…

For Her. Bobbi


April 28, 2011

Bailynn’s recovery from surgery was swift and she was able to return to therapy within 2 weeks of her operation. Her incision looks wonderful and we go Thursday May 5th to Indy for her post op appointment. She is remarkable! The VNS seems to be working in exactly the same manor, so we are very happy!

I know that I promised a party for the little ladies 11th bday on Wednesday May 11th, but another plan has come about. Everyone has such busy schedules and gas is averaging $4 a gallon, we have decided to throw Bailynn a Birthday Card Party.

A Birthday Card Party is simple, just mail her a birthday card! It only costs one stamp and handmade cards are completely acceptable! If you truly feel the need to send her a gift she would love gift cards to the Movie Theater AMC or Target, but a gift is not required! I will attempt to have some kind of gathering for her in the future, but right now is just not going to work out. I will display all her cards for her and I’m sure she will love the visual attention :)!!! Then I will be sure to post some pictures!

You can mail your card to Bailynn Hammonds 5715 Upper Mount Vernon Rd. Evansville, IN 47712 Family Members, please pass this info on to anyone and everyone! Thanks!!!

For Her. Bobbi


May 10, 2011

Bailynn has had a steady flow of Birthday cards coming in since Saturday. Thanks to everyone who has or will be sending her one. I have laid them all on her nightstand for her to open up on her Birthday and crinkle and scrunch to her hearts delight. It should be tons of fun!!
She hasn’t felt well the last two days and tomorrow, for terrible birthday present, she has a doctor appointment with her Nephrologist out at Deaconess Gateway. Oh well, her doctor just happened to be coming on that day. Tomorrow I’m maiming her a Key Lime Pie and we are renting Yogi Bear; hopefully that will make up for it ;). Thanks again to all!! I can’t believe she is turning 11 tomorrow!

For her Bobbi


Happy 11th Birthday!

May 11, 2011

Well today little Miss is 11!!!! She had a great morning sipping her boost and watching Tangled and Cinderella. Than we headed out to the east side to see her Nephrologist. Bad news……Happy Birthday!!! Her left kidney has a tuber that has grown significantly in size over the last 6 months from being just at 4.1 mm to over 5 mm. I am on hold with her Urologist’s office right now waiting to get an appointment. He would perform what ever surgery would be done if he felt that it was necessary to remove the tuber now. UGH!!!!!! I’m so tired of sitting on hold and begging doctors to call one another. I sick of coordinating appointments with clinics that refuse to help and listen. I am sick of gas prices and the knowledge that these people have to understand that we cannot afford to drive back and forth all the time!!! I am tired and just wish she could have a “normal” birthday, but she is Bailynn and “normal” was thrown out the window 11 years ago today. They say her Urologist’s clinic is full till August! OF COURSE!!! More calls to make – more ranting to do!! I’ll keep everyone posted.

Happy Birthday to my precious chaos maker!

For Her Bobbi

This made me smile.

Magic Wand

I wish I had a magic wandTo make it go away; I’d wave my scepter over you
Until you were okay.

I’d think good thoughts; I’d send you love; I’d transmit healing vibes;
My wand and I would surely beat Whatever the doc prescribes.

But there is no magic scepter, so
I cannot cast a spell; Just know you’re often in my thoughts, And I hope you’ll soon be well! By Joanna Fuchs


Darn Kidneys!!

May 12, 2011

Well, after many long hours on the phone talking back and forth between Evansville, Riley, and St. Vincent’s….Bailynn can’t wait till the previously made appointment in August to see her Urologist. So, on June 7th Bailynn will be having a CT scan in Indy at Riley with contrasting dye to try and see the Tuber best. They will have to do this because it would actually be ideal to do an MRI and she can’t have one!!!! Then afterward she will see her Orthopedic Surgeon at St. V’s to take a look at her ever bulging horrifying rods! Could this day get any more CRAZY!!! Bring it right! So another morning sat on phones coordinating with people who don’t want to coordinate. FUN!
Now I am off to pick my gals up and try to salvage the rest of the afternoon evening without thinking of doctors and never ending appointments. Pray that gas drops by then….for everyone’s sake!

I will continue to keep everyone posted for now send her some big prayers. The Urologist made everything seem urgent and her kidneys have to be spared!!!! Because I said so!!! 🙂

Love to all as always…..For Her. Bobbi


Kidney News

June 20, 2011

It is a lovely Monday evening with fireflies lighting the back lawn and my phone rings with not-so-great news. What a start to the week!

I remember as a child praying for Cabbage Patch Dolls, Clothes, Fancy Vacations, to win the Lottery – how silly all those prayers seem now. When so few things truly matter, it seems “stuff” still possesses most all prayers. For eleven years my prayers have been so less tangible. I’ve prayed for healing, for helping, for doctors, for surgeries, for strength, for less tears, for more, for funding, for peace, for no pain, and tonight for kidneys. Gone are days when a Cabbage Patch Doll took precedence over the big picture.

Dr. Rink, Bailynn’s Urologist, called this evening. Yes, two weeks since the CT scan up in Indy! He was so nice, but direct. Things are not looking great in the left kidney. Bailynn has a tuber roughly 5.5mm in diameter. That is about the size of a pencil eraser, but in the terms of it being in a 43lbs eleven year old’s kidney – it’s HUGE! It consumes the lower half of her kidney, but the doctor’s biggest concern is the signs of past bleeding around the area. He also believes she may be suffering from pain related to the issue. Bob and I have thought she may on and off have had a UTI (urinary tract infection), but after taking urine samples to the lab, we found she didn’t. So pain – yay! I HATE the thought of pain.

Her case is so complex and severe (per his words) that he feels he should not make a decision on his own as to what to do. Wednesday morning the Urologists in Indy convene for a weekly meeting and he asked permission to present her case and ask advice. I love it when a doctor admits he may need help. Once he relays his concerns and goes over options he will call us Wednesday or Thursday with ideas. Surgery is most likely in the forecast.

Pain. Her tears are little daggers to my heart and I wish for no more than simply removing her pain. So dear Lord my prayer tonight is for kidneys. How time sways us and life changes us.

For my dearest Bailynn. Bobbi


August 22, 2011

Well, in all honesty I have little to report and that is why my update has taken so long to come.

Bailynn’s urologist finally called about 2 weeks ago and said Bailynn will need surgery on her kidney. He does not know whether or not to go in and remove the tuber or to do a laparoscopic type surgery to cut of the tuber’s blood supply and “kill” it. There are pros and cons to either option. With surgery they can get a tissue sample and the tuber is gone from her body at the cost of surgery. WIth laparoscopic the procedure is a lot less invasive, but the pain of choking off the blood supply is apparently severe and no tissue sample. We are still waiting to hear back from him for a final decision. What is taking so long? We are clueless!!

In the meantime, Bailynn is having a MRI on Friday up in Indy on her brain. Okay, why? Bailynn has had some significant tuber growth elsewhere. Her face is getting more, her skin throughout her body, her nails, and now there is a small ball or lump in her leg; we are seeing dermatology in October. All of this new growth and development of the tubers constitutes the need to check her brain. The scary thing is that when we would notice “brain” issues; it would most likely be too late. So, Friday we roll to Indy.

She never gives us a dull moment, but a glorious thing happened at our last visit. She smiled and gave funny faces and “interacted” with some of her specialists to show the she is there. She hears them, she knows they are helping her, and they are simply perplexed and amazed at her complex comprehension despite a mental disability due to Tuber Sclerosis, a stroke, and brain removal – cause she ROCKS! Anyway, it was great to have her Neurologist be so impressed by her and the fact that she is on NO MEDICATIONS! is astounding!

Thanks so much for all the continued prayers and support. Bailynn is famous – in her own way. She is like a superhero…. Thanks for loving her and keeping up. I will post when I know more.

For Her. Bobbi


Finally some kidney updates and Surgery Date!

October 7, 2011

I have this app on my phone that tells me exactly how many days it is until events. Like there are 78 days till Christmas and 4 days till Isobel’s 9th birthday. There are 29 days till we “fall back” our clocks and 47 before we sit around a table to celebrate Thanksgiving, but today a new date was added; there are now 5 days till Bailynn has infarction surgery on her Kidneys.

I have said it before, but so much time is waisted waiting…counting…obsessing..

We drove to Indy on Tuesday. I rolled out of bed just at 3am and quickly gather the girls as Bob returned home from night shift only to take a quick shower and hop back in a vehicle with no sleep. We headed north not knowing what the day would hold, but for sure not expecting the news we got.

Our first stop was Dermatology in Northern Indy for a quick update, after years of not seeing them, on the tuber growth on her face, in her nails, and on her body. It was uneventful and she is trying an experimental topical cream to try and make the tubers less noticeable. We really woke up at 3am for that – grr!

Next we headed to Riley and waited and waited and waited and waited to see her Urologist. We were there from 12:30-4:30 before we saw him – no lie! He apologized profusely, but the day was shot and the news did not improve with his entrance.

So, here is the real deal. We were told after her June 7th CT scan that she had a bad Tuber, they are actually called angiomyolipoma if you want to look it up, in her left kidney that was approximately 5mm in diameter; not good, but okay. Well, Tuesday we learned that is not the case. Bailynn has much larger angiomyolipomas in both kidneys, in the lower half, that measure roughly 5CM in diameter!!! AHHHH! That is huge!!! HUGE!!! HUGE!!!!!

Okay, so deep breath! That was in JUNE!!! It is OCTOBER!!! Are you kidding me! They are still growing!! There were 2 options placed before use. One was an open surgery to remove the “bad” tissue. This would require an incision larger than a c-section all the way across her tummy and could result is kidney failure; if not one, but both kidneys could be damaged in one swoop! NOPE!! No thank you.

The next option presented was infarction. Okay, this is were a radiologist would treat the Tuber (angiomyolipoma) like cancer- yup, cancer – and go in through her bladder, enter her blood stream, locate the tuber and KILL IT! Okay, cut off it’s blood supply – same thing! This could not work and it could cut off blood to good parts and it could not work, but Bob and I decided that it is still the best option for Bailynn. In the event it does not work, we have agreed to let them open her and do surgery on just one kidney. Her Urologist is very frank with us. Bailynn has the worst case he has ever seen. Not only that, but Bailynn’s kidney films were mailed throughout the US to top notch specialists in Urology, Cancer, and TS to see what he should do and none of them have seen a case as advanced as Bailynn’s. She baffles the medical communtity. They don’t know how this little girl lives. They don’t know how this little girls kidneys work at all. The tissue is so mis-formed her Urologist doesn’t even know what part does what or how. Scary.

The infarction will be very painful. The doctor compared it to putting a tourniquet on your hand and letting it die without removing it. The tissue would tighten and the pain would localize and be very uncomfortable. She will have this feeling in both kidneys and the pain could take almost 5 days to dissipate. There is still a risk of damaging the kidneys and of infection, but not as risky as the open surgery option.

We head on the morning of the 12th, the day after Miss Is turns 9, to have this procedure done. Please pray for the radiologist to be steady and true when finding and infarcting the tubers. Please pray for us financially – this is the second surgery this year and we feel this pinch. Please pray for her pain to be minimal and her recovery swift. Please just pray for her. She may have stumped the medical community, but she does live and she is ours. I hate her tears and suffering and her life seems filled with it. She is a champ and hero of sorts that despite it all – fights.

For Her. Bobbi

Only one who devotes himself to a cause with his whole strength and soul can be a true master. For this reason mastery demands all of a person.
Albert Einstein

Bailynn is a true “master” of Tuberous Sclerosis and has devoted herself to doing it well – despite our beggings for her to quit! 🙂


October 12, 2011

We are on the road. We have to be at Riley by 8:30am and her procedure is set to begin at 10:00 and last approximately 2 hours. This is a new venture for radiology so it may take longer. I’ll keep everyone posted

when we know thing. Thanks – for her Bobbi


October 12, 2011

She’s back. We are grabbing some lunch with the girls. She has a little over an hour left. Sent from CaringBridge iPhone app


October 12, 2011

The nurse said she is doing really well. They approximate 30 more minutes till she is done. Sent from CaringBridge iPhone app


October 12, 2011

She’s out and doing well in recovery. She has to lay flat for two hours. This is not going to be fun!! Sent from CaringBridge iPhone app


October 12, 2011

Bailynn has one hour of recovery down. She is strapped down flat and is not liking it one bit!! She has an hour to go. They don’t know if there is a bed for her in the hospital yet. Running on fumes … Recovery lasts forever. We are all chilling with her watching Wizards of Waverly :).


October 12, 2011

Bailynn is in room 9118 at Riley. She was doing super well when I left with the other girls for the hotel. Bob is staying with her for tonight. Please pray it goes smooth and they both get rest. The other girls have finally conked out now I’m waiting for my brain to stop churning!! We still won’t know till she has a CT scan in a few weeks if it truly worked. She is such a tough lady. At 6ish she got her first pain meds since leaving the procedure and had already sucked down 3 boosts. I could just hear her look at the doctor, “really?! That’s all you got? I’ve had worse!”. God loves Bailynn and he may have allowed her to go through this, but he sure did give her the strength to endure it.

For her.

Bobbi


She will be released TODAY!!! YAY!!

October 13, 2011

Well, Bailynn did AMAZING last night. She took pain medication about every 5 hours and never really seemed to be in pain. She never ran a fever or threw up (which they warned us she might do). She watched Transformers 3 with her daddy and dozed for a bit. Her Urologist came in just a bit ago and is amazed by her, maybe bewildered is a better word, and her ease after the procedure. She is content and watching Toy Story 3 now as we wait for release papers and instructions (this takes hours). She hasn’t cried or winced except when her bandage was removed this morning and even at that she just gave the resident that did it an evil eye! So we get to go home! When we go home we are to watch for fever and throwing up and in the worst case scenario we will have to return if the fever exceeds 102 for too long. They did kill part of her kidney and the tissue is dying within her right now. We will return in about a month for a CT scan. I will let everyone know when we are released and when we get home. Thanks for the prayers – we all felt them last night 🙂 (even as I slept with the twins getting little kicks and pets all night! lol!!)

For Her. Bobbi


October 13, 2011

We are still waiting to be released! No lie – it takes forever!! Bailynn is still doing great. She hasn’t had pain meds in hours (we want to give her a dose just before we leave) and she’s now watching Harry Potter. The other girls are all doing great. They love the hospital; the staff thinks they are awesome :). Hopefully the paperwork will be done soon. She also still needs her IV removed. Waiting stinks. We just would like to be home by diner time.


We’re out!! But…

October 13, 2011

We are sitting in traffic, but we have left the hospital. It is going to take us forever to get home at this rate. The twins have already fallen asleep and Bob and I are looking forward to a late lunch not in the hospital cafeteria! I’ll post when we are home. It is going to take a long time though with traffic sitting on 70.


October 13, 2011

We are home!! Bailynn has some bruising at the entrance site of her procedure, but is still showing minimal signs of discomfort. Thanks again for all the prayers.
Constantly thankful – for her
Bobbi


October 14, 2011

Bailynn has rested peacefully today on the sofa. She has barely kept her eyes open and hasn’t had pain medication since 9ish this morning. Her bruising is pretty significant, but she doesn’t seem bothered by it in the least. I will say she isn’t eating as well today, but I am certain that she is more uncomfortable than she lets on. She still really hasn’t ran a fever either. She is the toughest lady on the whole plant!

We have spent the day at home doing things around the house and relaxing and we plan to continue doing that throughout the weekend. Riley did call to check on her today and seeing as there is little to report – with her sleeping all day and all- they were pleased with the lackluster update.

I will call Monday to set up her follow up appointment and CT scan.

Now I have a little bit of a story to share with Bailynn’s readers that was stunning to me….

We have haunted the halls of hospitals for years. We have spent countless dollars on icky hospital food, hotels, and parking garages. We have had months were we scrapped funds from other areas to support gas and constant trips; we know what it feels like to constantly spend money going to and from the hospital. I guess it just seems like part of it, but after complaining (not me lol!!) to the staff at Riley about the RIDICULOUS price of the parking garage the nursing staff told me stories that broke my heart. For just one day in the parking garage it can run roughly $15. IUPUI owns the garages surrounding Riley and do not allow “vouchers” from Riley to pay for the expense; another words you have pay. There are no close parking lots or an easy way to get around this continual expense. So the nurses told me that many parents do not come to see their children cause they can’t afford the parking garage! What!?!?! A parent is prevented from seeing their child because IUPUI Feels the need to make money off the sick and handicap. What a society we live in, that a mother or a father could not go see their child, because they can’t afford it. The working class that is trying hard and constantly battling to get ahead…I’m ashamed of IUPUI and their need to make money! We dropped a few hundred dollars in a matter of days up there and I remember the times we spent weeks – it is a burden to finance and a shame there is not more help. I wish there was a charity that gave families in need money for food, hotels, and parking garages while their child are incarcerated in a hospital. I just had to share. It was heartbreaking to hear. I would go broke before I would leave Bailynn in that hospital alone! Prayers for those families and their babies laying waiting for them…

For Her. Bobbi

“You will find, as you look back on your life, that the moments that stand out are the moments when you have done things for others.”

– Henry Drummond


October 15, 2011

Bailynn is running a mild fever today and feeling a smidgen wimpy today, but she has had no tears still. Tough. Tough as nails. Her bruising is still worsening. It is expanding throughout her abdomen and she is wanting to keep her legs drawn up to her. Despite it all she has enjoyed another day full of movies; I ran to the Library and grabbed a few movies we had not seen yet.

Bob and the girls are outside taking down our pool :(. We roasted marshmallows and have hung out around the house basking in the fall breeze and air.

Another day of recovery down…

For Her. Bobbi


Success!!!

November 28, 2011

We awoke when it was super dark, loaded, and headed to Indy this morning. Bailynn got contrast via IV for her CT. Though we were told differently prior that she would be drinking it. The CT showed that the smaller tumor that was imbolized has decreased in size drastically it is only about 7cc and started at 24cc. The larger only decreased by about 30cc. It is roughly 115cc in volume. It is astonishing to see its size in her little body, but for now it seems to have worked. A blessing – when one was so desperately needed. Thank you for all the prayers. We are back in “rocket” heading for lunch and then home.

For her

Bobbi


February 27, 2012

I have started to update many times, but always find myself disappointed that I don’t have better news to share.

2011 was a long year.

Bailynn has had a rough few months of not sleeping and crying to a point that Bob and I have taken her for CT scans, Xrays, Bloodwork, and consulted with many doctors about her lack of contentment. Nothing has turned out to be any kind of “issue” or significant type of problem to cause her continual discomfort. The worst is during all of this it was discovered that the angiomyolipomas in her kidneys (aka Tubers) have not shrunk since the original CT scan post surgery. This is terrible because it means, though the procedure has prevented them from growing further, it didn’t work in shrinking them.

Her case is going back to the debate circuit for the urologists and cancer specialist of our nation. That’s right folks her kidneys are officially famous. Too bad it is not in a good way that they achieve fame.

Our latest debacle has been her diapers. Medicaid has forced us to switch providers and (heres a shocker) they are TERRIBLE. We ran out of diapers last week. She is squeezing into a size 7 pampers without ease. I can’t find any XS adult diapers in Evansville that I can get my hands on. When I have called the new diaper providers on countless occasions they act as if this is no big deal! I have been flabbergasted by their lack of sincerity in her need or their ability to get the process taken care of in a timely manor to receive the diapers! Are the kidding me!!? She is leaking everywhere. We change her diaper crazy often to prevent too many leaks and I got pads for her bed from Sam’s Club so that cleaning her sheets daily will cease.

We have no appointments for her set up for anytime soon. I really don’t even know what we should do at this point. The option of cutting on her kidneys is ridiculous. She needs some peace. She needs contentment that we are desperate to find.

So this update is a bust. It may contain no delight or uplifting news, but she all-in-all is doing well. She hasn’t been terribly sick or hospitalized in a while. She smiles and plays (I just wish she would sleep better). It’s 2012 and 2011 is OVER.

Life is so short. I’m hoping everyone out there is doing their best to enjoy what time we have. To those we have lost or don’t see anymore – we love you. To those who have supported and loved through it all – we thank you. To those who read and pray – we couldn’t do it without you. To you all – LOVE from the Hammonds Family.

For Her. Bobbi


Diapers!!!

March 6, 2012

Never thought I’d be so happy to see diapers! It only took 4 weeks. I called to voice my opinion of their customer service and product delivery time yesterday, but Bailynn is much happier tucked into diapers that actually fit! Thanks to all that hunted and Melissa who located some that at least caught the leak of the other. It has been an interesting few weeks. At least one thing has smoothed out. Still waiting to hear from urologist about the next idea for her kidneys.


Pain…

March 23, 2012

Bailynn has been suffering from a great deal of pain today. Please pray for her to get some rest.
She has been super sensitive to touch and doesn’t really want to be moved or touched. She keeps drawing her legs up and crying big fat tears. She’s breaking my heart.

No one really knows what to do right now. We believe it is pain due to the large masses in her kidneys. I checked her for a UTI and nothing. Her bowels have been moving efficiently lately; so the kidneys have to be the culpret. She is truly miserable.

I will keep everyone up to date as to how the weekend goes, but if she doesn’t improve by Monday I feel a trip to the doc is a necessity.

For Her Bobbi


Now fever.

March 24, 2012

Bailynn slept after I dug some Tylenol w/ codeine up from her surgery last winter. Now today we are back to screaming, crying, and jerking with pain. She is running a mild fever but is eating and such. She just screams. Horror movies would kill for a scream like hers. She is so unhappy. I’ve tried holding her and laying by her, but she just wants to be left alone. One would think she’d just had surgery or was injured, but nothing – just pain. It is crushing us to not know why.


March 26, 2012

Saturday night Bailynn screamed so loud and long that I feared our neighbors would call the cops thinking some

sort of torture was ensuing inside our home. Thankfully they didn’t! After attaining a prescription for Tylenol w/ Codeine yesterday, Bailynn had a good Sunday. She didn’t scream at all. We even got to take her to Rural King to see the baby chicks and ducks; all the girls loved this trip.

She slept great last night and this morning is continuing in a good mood pattern. What a change from just a few days ago! She is even singing right now as I type.

Despite her new comfort with pain management, she is continuing to keep her legs drawn up to her. This in turn is keeping her spine at an arc and putting unneeded strain on her rods. She has relaxed a bit with pain medication, but could really use to relax her legs.

I am certain, after reading online and being on Tubers Sclerosis pages, that her pain is from her kidneys. It is horrible to read what some people go through pain wise with these growths in their kidneys and most don’t have it to even a degree of the severity that Bailynn does. It is highly educational for me to read what these people write that have a voice to tell their experiences, hardships, and challenges living with Tuberous Sclerosis. I feel they lend insight to me because Bailynn lives with TS and with no voice to tell us what is wrong and what hurts. To me their greatest gift is to be able to express what is going on with them – something I wish Bailynn could do desperately. I even told her if she could just point, but she simple cries.

I read one women’s account of her struggle with not being able to have children, another about how embarrassed she is when she seizes in public, and one where the young lady sometimes can’t leave her house for days because of pain. My heart aches for them as it does for Bailynn. What a cruel disorder

Today is a good day though and maybe tomorrow. We have always taken Bailynn’s life one day at a time. She is a tough cookie.

For Her. Bobbi

This is the day which the LORD hath made; we will rejoice and be glad in it. Psalm 118:24

“This is my wish for you: Comfort on difficult days, smiles when sadness intrudes, rainbows to follow the clouds, laughter to kiss your lips, sunsets to warm your heart, hugs when spirits sag, beauty for your eyes to see, friendships to brighten your being, faith so that you can believe, confidence for when you doubt, courage to know yourself, patience to accept the truth, Love to complete your life.”


Renal Failure Diet

April 2, 2012

Bailynn has had an exceptional week, though I have to say that it has been a dietary challenge.

So, I finally got to talk to some nurses and express my absolute concern with Bailynn’s pain and the idea was brought up to put Bailynn on more of a renal failure type diet. This means limiting things that our kidneys have to work really hard to process like protein, sodium, and potassium.

Okay, so putting Bailynn on a limited diet when she is already limited has been sort of a nightmare. Bailynn believes the only true form of nutrition is Boost and it is stuffed full of protein. Really if she has only 2.5 boosts a day, she has met the limit of Boost and she has been drinking about 6 a day prior. On top of that, her favorite yogurts and easy packaged baby foods have Bananas or Mangos which are high in potassium (grrr!).

Tonight she had some of my home-made vegetarian chili and gave me a face when it had to be washed down with cranberry juice. She is not happy with me, but no screaming! No crying! Her kidneys have so many of those darn tubers in them that she needed this diet and I really wish someone would have mentioned it to us sooner! So we are on a new path reading labels not only to make sure they have fat, but that they don’t have too much of other things. Thank the heavens my girlfriend (Beth) is a dietitian and I can call and bounce ideas and complain to her about this crazy dilima. Riley’s bright idea was to have Bailynn eat more greens and salad LOL!!! Uh, she doesn’t chew! I’ll get right on that salad thing. Sometimes I could just scream.

So, a decent week for us and who knows where this will take her. I’m hitting the net for recipes for smoothies and fun things she may enjoy. Now to make sure she doesn’t lose any weight that we have worked so hard to put on her.

For Her. Bobbi


The little things that bring big blessings…

May 7, 2012
Today was a hectic day.

Isobel and Arwyn had eye appointments this morning and then we had errands to run on the east side at stores that didn’t open for an hour after our doctor’s appointment got over. I felt fried and displaced even before we began our journey through stores looking for deals on baby food for Bailynn and grabbing groceries from Sam’s Club. By the time we made it home and devoured lunch, I could think of nothing but a nap. We however needed salt for our pool and I wanted a few pots for plants outside. So off to Rural King and Wal-mart we went; yes even after a long morning and desperate need for naps all around. Rural King was fine, but their pots lacking so we headed over to Wal-mart.

Here I am dragging my sagging children through the gardening section. We find what we need and head for the check out. This lovely older woman tells the girls how beautiful they all look. I think ‘If only you’d seen them this morning not fried from the day and hair still in place.’ They smile and then she did something few people do. She asked how old Bailynn was and placed her hand on her arm. She looked her square in the eyes and said, “you are a beautiful little lady.” She proceeded to tell me that she had had a daughter with special needs as well; that explains it.

We check out and the same woman comes back to check out as well. She starts telling me of her daughter’s seizures. How she didn’t speak and only ate puree food. She told me how much she loved the sound of the blender and watching movies. How she enjoyed her soft bed and her family’s voices. She talked about her daughter with love and compassion. So I asked what her diagnosis was…

You know how the world can sometimes just simply stop like when you get married or have your first baby?

She said Tuberous Sclerosis. My mind stuttered. Those words have been so much in my life for 12 years that for a moment it didn’t register. Here was a woman that has lived my life. She sat in those doctors offices and held that little girl’s hand. Her daughter, Vicki, lived to be 40! 40! She never had any surgeries, just a few biopsies on tubers. She never took seizure meds cause they made her lethargic – LOL! Bailynn too! This woman patted Bailynn softly and told her to hang in there. She then looked at me and said, “It doesn’t get easier, but you look like you are doing a fine job and you can do it.”

Sometimes blessing come dressed as little old ladies…she made my long day. She told of how all she wanted was for her daughter to be happy and comfortable. It was like looking in a mirror of the future. She was me and I was her – just at different moments. So often I have wondered what I would say if I could go back and talk to me. Right when Bailynn was born is when I would like to see me. Tell me that it all works out. It was like I got to run into future me…

Bailynn may or may not make it to 40, but Vicki did! That’s hope folks! Vicki was the first patient at Riley diagnosed with TS. Bailynn was the fist at St. Mary’s.

My mind is spinning and I hug my girl a little closer. She will be 12 on Friday. For all the doctors who doubted and gave dismal out looks. SHE’S TURNING 12!!!!!! That’s something!

Love to all. I hope you all get a sweet disguised blessing as well.

For Her. Bobbi


May 24, 2012

Well, today we went to see Bailynn’s Nephrologist. She is one of the most entertaining doctors Bailynn has. I am not lying, this lady is all of 5ft tall and wears 6″ high hills. She is always dressed to the nines and I have to wonder how her feet feel at the end of the day.

She is a great doctor though. She just looks like she has a really fancy party to attend at any minute. Maybe she is just really prepared LOL!

Today’s visit was as expected. After reviewing the results from the kidney surgery in Oct and current labs, scans, and such; she agrees that nothing but stopping the continual growth of the lipomas in Bailynn’s kidneys was accomplished.

She told me that really there is nothing else to be done. Bailynn has so many angiomyolipomas in her, that cutting them out – as Bob and I already knew – would turn her kidney into a non-function type of swiss cheese. Best to not do that.

So she said to come back in 6 months (November) and I guess she will tell me again that there is nothing they can do, but at least I’ll get to see her shoes :). I am starting to wonder which doctors need to continue to be seen on such a regular basis that only tell me there is nothing they can do.

Than I was handed a paper that states:

“Discussion: Bailynn’s renal function is normal from her lab work. Her most recent CT scan showed many lesions in her kidney and this is not something we can go in and fix. Continue what you are doing”

I had to smile at this. Really. They had to put that in writing. Ah, Bailynn, she sure knows how to baffle people and give them reasons to print a paper saying, “Sorry bout your luck.”

I love her to bits and the doctors want to give me abysmal news constantatly. Sometimes high-heels make it better. Though today was somewhat of a recap over the past months of kidney drama, I can still see the lighter side. She hasn’t screamed and cried for no reason in a while. We have enjoyed the better weather and gotten out a bit and she has really loved it. Life is good. Even when you can’t fix it. We are continuing what we were doing – loving her.

For Her.

Bobbi


The back!

January 22, 2013

I often don’t update, though there is always something going on with Bailynn.

It has been lovely few months with few trips to the doctors. Every trip results in the same outcome. The doctor walks in. Tells us things are bad, but stable, and that they will see us in a few months. This repeats throughout the months and years till we become numb to it. Bailynn is an anomaly. Something a doctor just can’t grasp. She functions with no reason or explanation to how. She baffles them.

The biggest struggle over the last few months has been with Bailynn’s medicaid that she receives through the waiver system and SWIRCA. There are all these new guidelines thanks to Obamacare that makes her look ineligible for her current waiver status. No lie the state told me that she “looks too good on paper.” WHAT!!! Come see her off paper people. It’s ridiculous. We are preparing to fight, but hoping we don’t have to. It will be summer to early fall before we really know if things are going to fall apart or not. It may take lawyers, many doctor’s statements, time and effort, but we will fight. Praying we don’t have to.

To the latest: Bailynn’s back, as always, is giving us fits. Bailynn had a fatty lipmo removed from her spine twice as an infant. It seems to have returned. My skinny 48lbs. 12.5 year old has fat collecting in the middle of her spine. Not on her tush where she needs it, or anywhere else – nope her back!!! She will be getting a CT scan in Evansville on Friday. They will send it to Indy hopefully we will have some answers next week. It may be surface and not in her spine, which would be great and not require surgery. Her rods however are still an evil double edged sword. They keep her straight and sitting beautiful, but they still poke out her little back and every ridge of hardware is visible. There is no need for scans to see where every bit and bolt is located – we can see them! Ok, not really, but it seems that way. There is some swelling around the top hardware as of today that is alarming. It appears to have been disrupted somehow. I have emailed previous pictures that I have taken and shots from today for the doctor to review (yes, i occasionally take pics of her back to document what I see). If there is an issue, the CT scan should show it on Friday.

The story of sisters:
Now I need to share a moment with our friends and family.

In the late fall early winter, Isobel lost a tooth. With her tooth she left a simple note asking for a “wishing bag.”

Bob and I had no idea what a wishing bag was and ignored it. A few weeks went by and one day we gathered around a table at our favorite restaurant, qdoba, and bowed our heads to pray.

When done Isobel made a comment about not receiving a wishing bag from the tooth fairy. So here was our moment, “What is a wishing bag?”, we asked. Isobel’s statement, “You write your wish on a piece of paper and you place it in the bag. Than your wish comes true.”

This is intriguing. Bob and I are all ears as we both ask what she would wish for. She’s a 10 year old girl. She’s dying to go to Paris. She loves the beach, Disney, she has grand ideas of living in a castle and being a princess – she’s 10.

All she wishes for, “I wish sissy could walk and talk like me.”

Wow.
That’s all. My 10 year old who could wish for the stars – anything her heart desired – and that would be her wish. Arwyn chimes in, “Me too! Wouldn’t’ it be cool to talk to sissy.”

My eyes welled up with tears and my heart with pride. We are raising some amazing young women. All the wishes in the world…….

I just had to share….it was a moment.

I will update more when I know more.

For Her. Bobbi


our chipped bird

April 15, 2013

People are often asking me how Bailynn is doing. Honestly, not a lot has changed. Her kidneys fill up with angiomyolipomas, her seizures have remained steady for years, her back shows every piece of hardware in it, she’s “super-model” skinny but her happiness level is high, our trips to the doctors are fewer and fewer (by choice) and she will turn 13 in a matter of weeks (On May 11th)!

If anything, she can prove any doctor wrong. She can make organs work that seemingly shouldn’t. She can function at much higher level than a neurologist says her brain should be capable of. She can when all they could say is can’t.

This year is big, because this is the year doctors throughout her life have said she would never make it to. Her 13th year was thought to be an unattainable goal, but here it is….days away. She will see her teenage years and for everyone that was skeptical I can assure them that she will do it with a smile on her face and sand in her wheels. That’s right, for our little fighter we are venturing to the beach for the big day and to visit the famous dolphin, Winter, for the second time. For those who don’t have Facebook, i’ll try to remember to post some pictures on here of our adventure. If you do have Facebook and you’re not friends with me, friend me. It’s under http://www.facebook.com/bobbihammonds11.

Now on to my story of a life moment…

I think our family has been in Kirklands on the east side of evansville all of twice. The girls are really just at an age that a store full of figurines and glass vases doesn’t scare me to death.

We were browsing around, not really looking for anything, when I spied these sweet little ceramic birds.

We love birds at our house. I should say that we love outside birds; not in our house lol! We’ve had the joy of trying to remove birds from our home and it is not a fun job!

Bailynn has an awesome bird feeder hanger outside her window and we have a few other little statues of birds about.

Well, these little birds caught me eye. They were so sweet and there was this one little blue one. The rest were yellow, red, even green, but only one blue. I picked it up and noticed a chip on it’s side. Not big, but a chip and I went to the service desk to see if there was another little bird without a chip in blue. I stood in the middle of Kirklands holding this little chipped bird and waiting when the clerk said that the computer showed that there should be a few more blue birds throughout the store and that I would just have to look around. She started to grab for the chipped bird and a moment of panic struck me. What would become of this little bird? He was sweet and blue. The only thing wrong with him was the little chip.I should tell you that Bailynn was sitting right next to me and I looked over at her, my little chipped bird. I shook my head and bought that little chipped bird, because he was perfect in his own right. His chip made him special – different from all the other little birds. I don’t want a perfect bird, he’s fine. He now sits on a shelf above my TV with his little chip showing. A reminder that his imperfection gave him a standout presence. The clerk smiled as I was checking out and looked at Bailynn and said, “it looks like this little chipped bird has found the best home.” Absolutely!

For Her, Bobbi


The Battle for Boost….

April 29, 2013
Today brings new struggles and ignorance.

Bailynn has had Medicaid through the waiver program since 2009. She had been on the waiting list since a few months of age. The only services we truly wanted and take advantage of were boost and diapers. NO LIE – we so don’t milk our government! So, when every six months rolls around and her boost is up for approval or denial, we hold our breath….DENIED. Every time….DENIED. Well, this time they wanted a growth chart. Should read: “ridiculously super model skinny”. Probably doesn’t, but should. It was denied after review of her growth chart. We go into appeal now. I have spoke to many people on the phone this morning already. Trying to get a handle on where to start and who to bombard with my rantings, most are on my side though they offer little hope.

We now have to prove without a shadow of a doubt that Bailynn could not survive without boost. The most ignorant part is that if she HAD a FEEDING TUBE this would not be an issue in the slightest, but she uses a cup. She at the age of 9 could finally hold a cup and feed herself. So few know what Bob and I have went through trying to feed her. Forcing her to eat. She can’t move her tongue like you and I – THEY REMOVED HALF OF HER BRAIN!!! She can’t walk, she doesn’t “talk”, she will never read, and go about life in any ease of a way, but she doesn’t have a feeding tube so – NO BOOST!! I could scream! I could cry! I could rant till my throat is dry and cracked, but now I have to fight – again! Poor Bailynn. Everything in her life has been stacked up against her. Walls built to make her every move difficult and a challenge. So sad that the little she can do is the biggest hindrance to her assistance. Please pray this gets resolved quickly and correctly…I have no restraint when it comes to ignorance and hurting my baby….they better watch out cause mama bear is out and ready for war!

For HER Bobbi


Birthday Girl.

May 8, 2013

Still no word on the boost. No matter. We will deal with it when we return from celebrating Bailynn’s 13th birthday Saturday!

For Her (teenager and all) Bobbi


Bailynn’s Birthday Celebration

May 17, 2013

Our week at the beach was great. Like always, we are very ready to be home! On the road now and enjoying the little voices in the back of “rocket” playing and talking about vacation.
We had our photos taken on the beach. We asked each of the girls to think of one word that made them think about Bailynn. This photo is the extra cute result. Bailynn has some pretty loving sisters!

For Her Bobbi


The day of screaming

July 22, 2013

Today has been an interesting day, to say the absolute least. Bai started her day fussy. She didn’t want me to change her diaper. She didn’t want me to touch her. She didn’t want me to roll her over. She didn’t want her boost. She didn’t want ANYTHING!!
This is somewhat typical so I thought little of it.

Than she started screaming…not blah ahhh…..AHHHHHH!!!! and BLAHHH and WHAAAAA!!!! at the top of her very sufficient lungs! She screamed and screamed and cried and screamed and cried and cried and screamed – you get the picture right?! She was miserable and I didn’t know why!
So my go-to is an enema, then gas meds, and then Tylenol with codeine. When my go-tos ran up she was still AHHHHHing!!!! away and big elephant tears streaming down her face. So, I called Bob. We can’t ask her what hurts. That hurts in itself. We decided to play the wait and see game. She was quiet through lunch and then like a volcano the eruption was catastrophic. She was wailing with such force her little voice was going horse. She had sweat rolling off her brow and was biting her hand. At one point she grabbed my hand and grasped it

with all the force she could muster….she was in severe pain.

Well, I called Bob again and the wait game had turned into meet me at the Doctor RIGHT NOW! Game!!! This is not a fun game by the way; just in case you may have thought it could be. I speed (not really, if you’re a cop it was quickish at best) across town to her pediatrician that I called on the way to say “here we come ready or not!!”(In a sing song voice – not really, but looking back I kind of wish I did. I think i was more or less choking on my tears at this point.) good thing they made way for the Hammonds clan.

After throat check, ear check, eye check, tummy check, fever check, x-rays of pelvic bone, legs, and spine NOTHING!!! I’m not kidding! They couldn’t find one thing wrong with her. She had blood work a week ago, it was fine. Urine test, fine. Nothing! Just screaming. Just CRYING!!! Nothing?! Really. So, here I am tonight releasing my frustration on my friends and family. Bailynn has had a long and bad day. She is on some Tylenol with Codiene and has finally fell silent in her room watching Nemo. She is not right and they don’t know why. If the night turns and we have to load a Rocket and head north, I will let everyone know. For now, we need SLEEP!!! Quiet! Bailynn to NOT SUFFER!! So pray my warriors. Pray for little Bailynn. The little girl that when I kiss at night puts her thumb on her lips to hold it in. Pray for the blue sparkly eyes that love to play and sing. She has no voice and we have no course of action. Tomorrow could bring relief or more suffering – I will wait patiently (my dad just laughed! did you hear it! he did) I WILL wait PATIENTLY!! for tomorrow and she will try her best, I know she will, to feel better and sleep tonight.
Love you all…As Always, For Her,
Bobbi


Morning & a shout-out to Tylenol!

July 23, 2013

She slept through the night. I believe it was a mixture of utter exhaustion and tylenol that finally allowed her to relax. This morning she was surprisingly happy to see her boost cup (with a fresh dose of Tylenol added to it) and gulped it down more true to character. She still doesn’t want me to move her legs around, but allowed me to change her diaper without screaming her head off. This was a blessing, I’m not sure how much more my eardrums can take.

She’s now watching Tangled through sleepy looking eyes with her toothpick skinny legs as curled up to her body as possible.
I talked on the phone with a neurosurgery resident to ask if her VNS could be malfunctioning. We had placed the magnet over it last night to temporarily shut it off and she stopped twitching. She’d had a bad seizure yesterday morning and we didn’t know if that had possibly sent everything into a whirlwind or that the electrical storm had made the VNS act up. We know she is in an incredible amount of pain to fuss at all. Her life has been one event of pain after another, she knows no different, and tolerates it like a champ. This however is something that had an immediate effect from an immediate cause (cause of course still completely and utterly unknown). So we look for the cause everywhere and at everything. Is it her rods in her back? Maybe the giant Tubers growing in her kidneys? That wouldn’t just happen overnight right?! Maybe her hips are out of socket (nope)? Or her ears hurt (nope)? Once everything is ruled out, it’s hard to rule them back in. Riley had little to offer over the phone. They of course asked if we could “swing by” and have her looked over. Trust me, if it was a swing by location, we would have swung. Had to explain that we lived almost 4 hours drive away (accounting for potty breaks with little girls of course). We were told to observe her and if she was still having trouble to call back this morning. She’s not right, but she’s not screaming like crazy (as of right now she actually singing her raspberry song)! Is it worth a car run? We will wait and see. She has appointments to see a gauntlet of doctors in September on the 9th and 10th. That seems ages away as of right now, but isn’t.

She has found some peace and rest. Yesterday was one of her worst days in a long while. Hopefully today will bring her relief.
I’d like to thank tylenol with codeine for a peaceful night and all the support and love from EVERYONE as we watch Bailynn grow. I know she has effected all of you in unique ways. I’m so glad to share little pieces of our life with you. There is a deep need for you to know her. I want the world to see her. To see her as a little girl. To stop and not see Tuberous Sclerosis. I want her wheelchair to not be a source of fear. Her sisters see her. Her pain. Her struggles. Her smile. Thank you for taking a glimpse with me and praying for my precious girl.

For her. Bobbi


A trip is in order

July 25, 2013

Well, we are heading to Indy. We will try and leave here around 4:30 and point Rocket north. Bailynn began twitching and screaming again around lunch time today. She is in pain. Simply put. Pain.
I’ve talked to so many people the last few days that I’m tired of being on the phone. The VNS does seem to be malfunctioning. The Vagus Nerve it is connected to runs the length of the inside of your body. If it is malfunctioning and sending “shocks” per say down her side, that would account for the pain and twitching. We ….let me restate!….Cyberonics, that owns the VNS, called all local people that support VNS diagnostics and NONE…I REPEAT NONE would see Bai. So we get to drive 3.5 to 4 hours and then again on the way home. Our hopes are that this is the issue and it is not anything internal. If so, we will have the thing shut off till we can schedule repair or replacement surgery. The issue with this is that it is the ONLY thing that controls her seizures. She is on NO MEDS. She could very likely have bad side effects from this thing being shut off. She’s had a VNS implanted (though this is her 2nd one) for nearly 10 years. It will be a very long evening. Here’s hoping they can help and figure this all out. She can not continue like this. It is unfair and I say that very little, but IT IS UNFAIR!!! She should be allowed comfort. If she is allowed nothing else, comfort is what she should be allotted.

For Her, Bailynn


July 25, 2013

Bai’s most wonderful pediatrician ordered her a dose of Valium for the road. Though I’m hesitant to use Valium after past experience with it, I’m so happy at how comfortable she is getting to ride and how loopy she looks :). ?That girl. We are in Vincennes. Onward.


Really!?

July 25, 2013

So after a 5 hour car ride, that on a bad day should only take 4, we arrived at er. Doctors wouldn’t page neurology; we had to. After an hour a very nice neurologist showed up and ran the roughly 1 min diagnostic test……&……..NOTHING!! VNS readings are fine! Are you kidding me?! I guess this is a good thing, but than what is causing the distress?! They don’t know. They are trying to admit us – uh, NOPE! We’ve ran every test we can think of. Why?! What else would they do!? Bill us. Lol! That’s bad right! Oh well, it’s true. So now we know nothing more than what we did hours ago at home. Hopefully we’ll get out of here soon!! We all want our beds. Bai seems fine as of right now – please let it last. Another day, another mystery. This is the life of raising Bailynn.
For her.
Bobbi


Heading North

September 5, 2013

Well, the month of August slipped away and September is here. We head north on Sunday to take Bailynn for a round of appointments.

We will get a fresh look at her kidneys and to talk about seizure activity.We have seen a very unsettling increase in seizures lately. It could very well be due to hormonal changes from puberty, but non the less we will address it. She will see her orthopedic surgeon, eye doctor, neurologist, urologist, and get a quick teeth cleaning. Over the 2 days that we will be in Indy, we will be in a whirlwind of appointments and tests. Here is hoping that we can find out why she has had outbursts of pain and crying.

I will try to make short updates as we get them, but don’t expect too much. The doctors still find Bailynn to be an anomaly that continues to amaze and baffle them – that’s our girl! 🙂

We will hopefully get to enjoy our Hospital Vacation. The girls are really looking forward to it. They love visiting Bailynn’s doctors and Hospitals. Yes, they are a smidgen strange, but they sure make the best lemonade from our lemons!

For Her. Bobbi


Mess up = tired ladies

September 9, 2013

There was a massive miscommunication today and upon our arrival at urology, after a kidney ultra sound, we were informed Bai’s doctor wasn’t at Riley today. Despite the fact that we had an 11 appt with him! At Riley. He was at St Vincent’s all day. They’d messed up the scheduling! Well, we couldn’t leave Riley. Bai had back to back appts with other doctors. So we were told that if we went over to St V’s after our other appts, Bailynn’s doctor will see us. We are currently sitting and waiting to be seen after hours of doctors and test – we are still waiting to be free, go get dinner, maybe take a swim in the hotel pool, possibly get some recoup from this day, but for now we are waiting to see a doctor we were suppose to see @ 11!!! So tired. So done. Tomorrow we do this all over again. More doctors. More waiting. Hoping to hear soon about her kidneys. Ultrasound looked bad, but I don’t know what it is in comparison. Will update later. Back to hospital imprisonment.

For her Bobbi


Bad news to end our day.

September 9, 2013

The tubers in her kidneys are very bad. Her left kidney has one that measures 6.8cm by 5.7cm. They are in her liver now as well. It has been a long and horrible day. There will be a ct scan in the near future – possibly tomorrow if they can work it in. We now have to find a doctor to go to for her liver. Her urologist is very nice about it, but there is little to do. He will present her case again to a board of urologist to review. Heart is broken. Kidneys are so important. He believes that it is definitely the kidneys causing the pain outbreaks. Not a lot to do, but medicate. Expected this, but still hurts. Pray for Bailynn.

For her Bobbi


Heading home.

September 10, 2013

Sep 10, 2013 2:56 PM
We are heading home. We will see Bailynn’s former GI, for the first time in about 10 years, on Oct 2nd to start watching these horrible things form in her liver. We are waiting to hear from her urologist to discuss future plans. He had surgery today and clinic at another hospital, so no immediate contact was possible. She’s doing fine and I believe everyone is super excited to return home. Hospital Vacation is only fun for so long and then we’re all done! I’ll update when I know what’s next.
For her
Bobbi


How we are

September 11, 2013

Many people ask how Bob and I are doing. How the daily care of Bailynn and the often bad news effects us day to day – you may be terribly surprised by my answer; Bob would have to speak for himself.
I am in all honesty fine – really, I love her and I love my family. Now that is not to say that my heart does not continually break as I watch her have a seizure or as we receive news as to how bad her organs are doing, but there is one life for us. There is one chance to make it on this big world and I am CHOOSING to live it. No, it is not perfect, but who’s is? I see the sparkle in my daughter’s eyes and the hope of a better tomorrow. I see her strength and the beautiful people her sisters are growing to be because of her – because of Tuberous Sclerosis. If there is anything Bob and I can put down as a flat out accomplishment, it’s we have kept moving forward. We have never taken any moment as a full blow, just a new obstacle. There is always tomorrow to fight and we will fight. Did I dream that one day I would continually sit in doctor’s offices and call insurance companies demanding them to pay for expenses? No. There are lots of things I never dreamed of doing that Bailynn has made me do. Who would we be? I wonder. I see the four other little girls and wonder if they would be here or be as completely perfect to me as they are if it wasn’t for Bailynn. I see the things we have done to make our home accessible and to make or lives fit her needs that wouldn’t be here if it wasn’t for her. I wonder how I would view life, because every moment of every day seems much more important to me.

There are moments of weakness that get to me. Walking through Riley Monday and Tuesday I saw a lot of children battling cancer with their bald little heads fighting a horrid evil and I have pang of jealousy. Jealousy?! Yes. Jealousy. Cancer has a fight. Cancer has a way and a plan and a battle to wage! TS has nothing. TS has no meds – no plan – no way to demand a fight between her and it! Cancer does! It has research and meds and latest battle ground technology! TS – nothing! We have to watch. Watch her organs fill with little tubers that eat away at the healthy tissue. We have to watch her in pain. We have to watch and have no way to STOP IT!! Tell me, do you see the jealous? Can you feel the pang? Awful, right?! A moment of weakness – so I pray for the fighters who fight cancer, cause they can and I weep for the battles that have no weapons to fight with. Their families have mountains of hope and TS has scans and more waiting and no real break throughs. Could we please fight it like cancer?! Could there be a weapon!?! For now we have nothing. We hold our chins up and fight on with an empty arsenal, because we will keep moving forward. We will keep loving her and waiting for a better tomorrow. It may never come, but that would be ok too, because she has made me a better me. TS stole something from her, but also gave a lot back – a new perspective for all who meet her.

When she goes to Heaven, wether it be in a year or 100 years, we will celebrate. We will take that moment to share her life and her new freedom. There will be no wilting flowers and somber music. There will be pinwheels, sparkly things, and hot pink. There will salsa music and fanfare, because she is the strongest most amazing little girl and in the things she loves shows her bold personality and look at life. She is a remarkable person and has in-turn made her family unforgettable. So, there will be no sorrow.

Living for today – For her. Bobbi


A way to finically support Bailynn

September 12, 2013
There have been a few people asking how to finically support Bailynn’s ongoing medical expenses and equipment needs. I am not one to ever ask anyone for a single penny to help, but I understand the want to help and I so very much appreciate the deep caring for Bailynn. So here is a website that a friend helped me to discover, it’s a way to donate funds to help support Bailynn. It required a set $ goal amount and I had no clue what to put honestly so I had Lila pick – fyi she’s 5 and said to put $5. 🙂 – love that girl! Anyway, please do not feel obligated and thanks to everyone that reads on and prays on for Bailynn! http://www.gofundme.com/bailynn

Love for all – For Her. Bobbi


In memory of surgery

September 13, 2013

12 years ago tomorrow, Bailynn was supposed to go under the knife and have almost the entire left side of her brain removed. In the chaos and aftermath of September 11th, the surgery was canceled. We were devastated. It was the one chance we had to help her. The only idea to end the ceaseless suffering from seizures. I remember standing in my home, that was still under construction at the time, and listening to our president address the nation. I remember hurting and praying for the lives lost and effected, but also pleading with Riley to reschedule Bailynn’s surgery as soon as possible. Yes, it was scary and I knew she may not survive. Our nation was in an uproar, but Bob and I knew this risky procedure was basically the only option she had.

The week stretched on. Images that I have forever seared into my memory still burn fresh and finally the call came. On September 20th, the surgery began in the early hours of the morning and it wasn’t until September 21st that we saw her again. Our little baby had survived a procedure that had lasted over 24 hours and opened her big blue eyes to look at me dead-on for the first time ever. In the mist of a disaster and a world looking for answers, my little girl was given a new chance. A fresh start at her life. We didn’t know what was in store or how the next years of her life would unfold, but this was the moment that changed her and us. I remember September of 2001 in a whole different way than most people. On the 20th of this month, we celebrate her rebirth. A shout out to the procedure that gave us a glimmer of hope in a disorder that has few. As news clips of those days and the days that followed are re-aired and people “remember” – I remember. I remember leaving seizure medication and finding a little smile. I remember her finally holding her head up and falling in love with Hawaiian Delight (it was all she would eat for months!). I remember her grasping a toy for the first time and really playing with it with purpose. I remember her singing and blowing raspberries for the first time. I remember meeting my little girl – the one that had been lost in a sea of hundreds of seizures a day and a cloud of medication.

So, as hard as the last for months and years have been watching her kidneys fill with these evil things and now her liver, I remember everything it took to get here. Every moment she learned something new has been an enormous victory for her and us. At 9 years old she held a cup for the first time and drank from it on her own! Her therapist and I had worked relentlessly with her to make this one simple task a reality! Now, gracious forbid you try to take that cup or help her drink. She will give you the “evil eye”, because she can do it all on her own. I remember the first time she screamed bloody murder at Isobel for taking one of her toys. Made my heart sing with joy. Every road block, every trip that has resulted in bad news and more unknowns, every one is a piece of her history.

We are still waiting as best we can to hear from her urologist. His biggest concern is her kidney’s angiomylipomas filling up with blood. Her body is absorbing it back, but he is sure that it is
excruciatingly painful and we have to get a plan to stop the pain. If they can remove the left side of my daughter’s brain, than surely they can make her not suffer. Surely there is someone or something out there that could help. I scour the internet from time to time looking for research on TSC and there is so little. I look for break throughs, highly acclaimed doctors in the field and research studies. There is little they do, that we haven’t done or looked into.
So another day, she is smiling and playing. It’s a good day. Tomorrow!?! Who knows, but I’m glad for today.

For Her. Bobbi


Lungs – FYI I HATE TS!!!

September 24, 2013

We met with Bailynn’s pulmonologist yesterday afternoon. We informed him of the tuber growth in Bailynn’s liver and the concerns of the growing tubers (angiomylipomas) in her kidneys. He informed us that in a x-ray to see Bailynn’s rods a while back, that there was a small place in her right lung. So, this is not good. Really not good. We have known the lungs can be effect, but now we have to get a ct scan and see just how effected her lungs could be. I am waiting to hear from her urologist to try and combine ct scans, but he is – as usual – almost impossible to contact.

I feel like the increase of growth and tuber activity lately has made a huge emotional mess of me. I just under no circumstances want her to suffer. She is as of now, fine. My worries don’t lay in today or tomorrow, but the future. I can’t imagine watching her suffer. She is such a happy person. She enjoys movies and rattles and life. I don’t want these evil things to steal from her the little she has. Hopefully I will hear soon and get a ct scheduled, but i’m sure the GI will want one of her liver also and we may have to wait till we see him next Wednesday to determine the best route for ct. Her pulmonologist wants us to go to Riley to have one done since she will have to be put to sleep for it. Another trip – ugh!!

I’m making TShirts – they will read “Tuberous Sclerosis SUCKS!!” any takers 😉 – really should, shouldn’t I. A fundraiser for her ongoing medical expenses. We will let the world know about this horrible disorder.

For Her. Bobbi

www.gofundme.com/Bailynn


Light at the end of the tunnel

October 17, 2013
There was a glimmer of hope this week….

I’ve said before, I often scour the internet for info on TS research and medications, I rarely run across anything of any importance or relevance to Bailynn’s condition. This week was a new story. Bailynn had an appointment with her pediatrition on Tuesday. The appointment was scheduled to express my disgust with how the doctors seem to focus on their tiny issue, but no one focuses on the big picture – that Bailynn has TS. I went to sit down and make a list of things to discuss with Bailynn’s doctor, some as little as acne and others her consistent constipation, but got the idea to run through the online archives and see if anything new had popped up for TS lately. TO MY DISMAY! Something Had! No lie! So, last year……did that soak in….LAST YEAR, Cincinnati Children’s Hospital started giving children and adults, with TS, a medication to SHRINK! non-cancerious tumorous growths in their kidney’s and brains. FYI the results are astonishing and it was all discovered OVER A YEAR AGO!! Rage bubbling in me. Furry. So, how is it that in a simple google search I find this info, but her doctors have never mention this or looked into it. Their piece of advice is to manage pain and watch the tumors consume her organs. I will give them a very simple petty out, they are not TS experts. There is no one

on staff at Riley that claims to be a TS expert. Well, there are doctors at Cincinnati that claim to be. They are even published in TS research. Bailynn’s appointment with her pediatrician took a different turn on Tuesday. She is referring Bailynn to Cinn. in hopes to see if Bailynn would be a candidate for this medication to help shrink the tumors with no surgical procedure. I called her doctors at Riley to question them and find out why such a huge thing was missed or simply overlooked. I have been ignored. I will move on. Bailynn will be seen by people who don’t count her out. Bailynn may have a chance at a life of more comfort and not be simply thought of as a case file and “unworthy”. Bob and I know her life isn’t going to be “typical”, but we’ve never expect her to stand up from her bed and hold a conversation with us. She is who she is and for some, they may not see that as being good enough, but it is. She is good enough. If we can give her a happy life and meds that won’t allow her kidneys to fail, than we will. If it shrinks the tumors in her kidneys and brain, who’s to say it wouldn’t do the same elsewhere. I am trying to not get my hopes up. All this could crumble around us and the doctors could reject our request to be seen. They could tell us her case is too advanced or that her body couldn’t handle the side effects of this drug. Who knows, but at least we will have done everything we can to try. Trying is all I expect from doctors. I feel a little betrayed. I will let everyone know what happens. The referrals were faxed today. Should be a few days before we hear something. I will link the site with the research below for anyone who is interested in reading about it.

For Her. Bobbi

EVEROLIMUS Medication Research.

Research in EVEROLIMUS reducing seizure activity in TS patients. The Dr. Franz and Krueger listed at top are the Doctors she is being referred to.


We have a date

October 17, 2013

You know your kid is a special case and has severe Tuberous Sclerosis, when the clinic you’re trying to get into calls you within an hour of receiving all the documentation about your child. I’m not lying…they wanted to see us next week! Wow, too soon. We are just on the heels of going to Riley. I also need to verify that they are in- network for our insurance. I believe doctors are oblivious as to how expensive it is to come and “see” them! So, we plan on heading November 6th and being a part of a whole new chapter of Bailynn’s life. This clinic is especially geared to TS patients and – get this!- all the doctors TALK TO EACH OTHER! Gasp!! I know!!! WHAT?! Does not compute!! They actually plan the clinic with all the specialist there! Double Gasp!!!! You mean we don’t have to travel multiple days to see multiple doctors in multiple clinics!! Who thought of this madness? (Please be patient with my blatant sarcasm.)

It is an emotional moment. We will be stepping out of our box and in a whole new world. Riley feels like home and this place is going to feel awkward. It will almost feel like cheating on Riley, but in all honesty, Riley has not been the best BFF lately. Riley isn’t pulling it’s weight and we can’t stand to watch Bailynn’s condition deteriorate any longer. So, November 6th, a new experience. Now to gather all the documentation and make phone calls…..the work is never done.

For Her. Bobbi

To help fund Bailynn’s continual Medical Expenses, you can go to gofundme.com/bailynn – do not feel obligated to do so, Bailynn does so appreciate all the out pouring of love and support. All funds raised go straight to ongoing medical expenses.


Scans arrived

October 25, 2013

Bailynn’s scans arrived yesterday in the mail. They are all nicely labeled and ready to travel to Cincinnati with us on November 13th. After being copied for our records first, of course.Yes, Bailynn’s appointment has been moved to November 13th now instead of November 6th. There was some scheduling conflicts with the Nephrologist they want us to see when we are there, so the date was changed. We are good with that. They had the foresight to make sure everything is in place for us before we arrive. Now to pray it doesn’t sleet, ice or snow on that date….cause our luck would bring horrible weather.

I have talked to Cincinnati on the phone twice now. They have been incredibly helpful and express unbelievable dismay 1 because of Bailynn’s unbelievable case of TS effecting every organ and 2 cause Riley seemingly was dismissing her and providing no immediate care.

I spoke with Bailynn’s Urologist’s nurse who claimed they had never heard of this medication or research being done. For a man who had claimed to be scouring the net, a ring of experts, and latest research to find anyone and anything to help Bailynn, I’m sad that this is the response. I also talked directly to Bailynn’s Nephrologist who claimed she could not give Bailynn the drug, only Cincinnati. Seemed unaffected by the my dismay that it hadn’t even been mentioned to us, if she indeed knew about it. Told me the medications, that per the website was FDA approved a year ago for TS, was still in trial phase…Cincinnati people said this was not the case. Again, anger has burned in me. I have been so beside myself with worry for Bailynn’s kidneys that this knowledge, and people that we have had in place for years not discovering it, has further infuriated me. We are so looking forward to meeting the team at Cincinnati. 19 days and counting….

For Her. Bobbi


Tomorrow…

November 12, 2013

It is finally here. We leave for Cincinnati’s Children’s Hospital’s Tuberous Sclerosis Clinic in the morning! I
spent a lot of yesterday compiling all of Bailynn’s surgery dates (14 in all) along with reasons for surgeries and
all her past and present medications. I then made a list of all her present doctors – 12 – and copied all the discs Riley had sent me with scans. I feel overly prepared and not prepared at all in the same breath. I am so excited
to see if these doctors are able to help Bailynn. I also read through some of her reports on her kidney’s that were on the Riley Discs. In 2007, the report states that multiple, too numerous to count, angiomyolipomas are within her kidneys, but none of significant size. In 2010, just 3 years later, it is reported that there is a angiomyolipoma in her left kidney measuring 5.1X5.3X5.3 cm in size. After the pricy infarction we had done on her kidney, in Oct of 2011, it did shrink to 4.6X4.9X5.1 cm, but is now (as of 9/9/2013) 6.8X5.7X5.5 cm……and that is just one of them. There are many of measurable size, but none as large as this one. This is also when the report states the discovery of tiny angiomyolipomas in her liver as well. Bailynn, as of 9/9/13, has every marker that is used to diagnose Tuberous Sclerosis; you only need 2 to be diagnosed.

We have a long drive in the morning and the weather is not supposed to be conducive to safe travels, but it is supposed to be a better run than the drive to Indy. I will try to update after her appointments. The first one is at 9am and then one at 10am. We are seeing their head Neurologist and Nephrologist in TS research. Now to continue to prepare for tomorrow and try and keep my nerves at bay.

Thanks for all the continued support and love for our little lady. It has been a joy to hear all the responses and talk to others that are as ecstatic as we are to see Bailynn get some true medical care for Tuberous Sclerosis. We have counted on doctors at Riley for too long to do their jobs. I am so thankful for the internet and the ease in access to information these days. Who knows if we would have ever heard about the medications or treatments going on in Cincinnati without it. Scary to think. We depended to heavily on doctors to be doing research and helping Bailynn. Now to go and find it ourselves.

For Her. Bobbi


November 13, 2013

We have seen no doctors. Appointments were suppose to begin 1 hr and 15 mins ago. Sat in 30mins worth of stopped traffic before chancing an exit and weaving around Cincinnati. Saw some really cool places because of this and finally made it to the hospital. Hopefully when the doc gets in here things will go better, but for now feeling frustrated. (Dad your head would have exploded by now!)


November 13, 2013

They have a poster for what Bai has! What?!!

Saw nephrologist. He believes she is a candidate for the medication that shrinks the tumors!!! He was great – respectful and appalled at the other doctor’s lack of action. Waiting on neurology now. They will talk to us about med, side effects, and how often we will have to frequent this place because of it. Could pop……more waiting, but excited!


Whirlwind of emotions.

November 13, 2013

Well, we are getting what Sounds like a miricale drug. Doctor actually believes Bailynn never had a stroke as a baby and her brain was simply mis-formed from Ts. Says if she was born today, they wouldn’t recommend surgery. Medicine most likely would have let her live a somewhat more normal life. Hard to hear.

We are getting it now. That is the important thing. Huge process to do so. Had to fill out lots of papers. Getting labs drawn. She will be very susceptible to illness and will have to stop taking med every time she may get sick. She won’t be able to have a laundry list of meds. Life is going to be more complicated, to make things better for her. There is a huge list of bad. Worst side effect is mouth sores. Getting a med just to help prevent and treat those if they occur. Doctor says she should gain more mental function and tumors should shrink. Here’s my hopes….do you see them inflating. Please let it be so.

For her. Bobbi


Buttercup

November 15, 2013

I’ve had this Barbie horse, Buttercup, since I was a little girl. He is a lovely golden carmel color and has been played with for at least 30 years now. I even still have his little brown saddle. Buttercup is an old type of plastic that is hard and brittle and easy to break. He has sat in trunks and attics, been exposed to hot and cold, all of this in-between me playing with him and the girls playing with him. He has taken romps in the dirt, swam in a pool, had his hair braided and gallop through bathtubs. Buttercup has been through a lot and now he has had his legs broke a few times. He has been well loved and played with. I have continually glued his little skinny legs back together time after time. I have sanded and reglued, sanded and reglued, and eventually came up with a combination of glue and medical tape in a last ditch effort to keep him in play. He holds deep Barbie playing memories for me and now for my girls, but no matter how much effort I put into his repair, he inevitably breaks again.

Right now I’m staring him down with yet another broken leg and a new effort at repair. He will live to see another day. Pretty soon we will have to give him wheels I believe. 🙂
I compare this scenario to our efforts with Bailynn. Over the years we have watched things “break” and went in with the superglue to repair. We have resorted to medical tape and sanding and regluing over and over again. We have treated in the best manner we can to keep her in play. Every effort like surgery, medication, implants, scans, and multiple doctors with countless visit, have been our undying effort to maintain the best life for her. Everything we have done has been a small patch, like Buttercup. I can’t melt Buttercup down and reform his legs. I won’t simply replace him. He is a part of our little Barbie world. I can’t restart Bailynn’s life. I can’t remold and make the TS go away. I can’t change the life she has been blessed with, and simply wouldn’t. I have come to love our flow of life and our view of the world through a set of wheels and a sea of doctors. There is nothing I can “do” for Buttercup. He will one day land in the trash. There will come a moment when the repairs and superglue are simply not enough, but I finally feel like I can chuck the superglue from Bailynn’s life. I feel like we finally have a plan, an option, and dare I say HOPE! I feel like finally, I can take a breath and see a small shimmer of a light that could open up new doors and possibilities for her and for us. Could it be true that her kidneys could begin to heal themselves. Could it be possible that her brain would start to function at a different level when the tubers begin to shrink and allow her neuro pathways to communicate better. Not without some sacrifice of course. There are consequences that come with such a daring move. She will be much more susceptible to illness. She has to refrain from taking the medication, that could potentially change her life, until she is well again. If she gets so much as a 101 fever, she has to go to the hospital – immediatly. She could get terrible mouth sores. If she is injured, there are procedures that cannot be used. She has to stop the med weeks prior to surgeries. She could get a bad cough and have to see her pulmanologist (this is a true concern with her already compromised lung capacity). She will be more prone to having high cholesterol (which with her diet I doubt is even a slight concern) and many more things from silly to scary.

I have contacted her Neurosurgen that we love and respect, her pediatrician that will do a ton more leg work and continue to be our only local contact, her orthopedic surgeon to verify that this med will in no way effect the rods placed in her back (especially due to the mouth sores), and have begun to realize everything is about to change….and making myself keep my joy in control; it may not be as miraculous as they proclaim (But I Want It To Be!)………..but it may. It truly may.

So after the list of all the bad is read and all the possibilities/downsides are discussed, how do we not leap both feet into this drug. Thirteen years ago a doctor walked in to the ER and told us the only hope was removing most of the left side of her brain. We didn’t flinch. It was hope. It was a plan. We said, “When!” This is the first moment since then that I feel like we are finally in control again. We have the reigns and we are guiding the TS. It has been winning for years – now we are going to fight back! I said cancer had a fight a few posts ago and how desperately I wanted one! We have one! TO THE FIGHT WE GO!!

Pray that all the bad outweighs all the good. Pray. Pray. Pray. I will share our journey and we will all see it together. For Bailynn. My fighter!

For Her. Bobbi


Have I ever mentioned how much I hate dealing with Insurance!

November 21, 2013

Our insurance is having trouble approving the Afinitor Medication. I spoke briefly to Cincinnati yesterday and they have no timeline as to when we can start the meds due to our insurance holding up the process. Nurse seemed pretty miffed at the situation as well, saying it “typically” gets approved pretty quickly. We even signed emergency papers in an attempt to get it processed quicker and because of Bailynn’s health condition. Hopefully it will move along better. I may call insurance today just to see why things are being held up, but I am well aware that the soulless minions that answer the phone at Anthem rarely have any insight into pending claims. On the upside, we went to see Bailynn’s pediatrician on Tuesday and went over all the side effects, everything she has to care for, and everything we have to do to prepare. I’m struggling with some things that I still have to take care of, please pray I find the right gentle words and the proper way of doing what needs to be done for my family. Bai’s pediatrician was great and is also preparing her office for the possible influx of manic calls from me (hopefully that never come to pass). In this month of Thankfulness, I’m thankful we are seeing a plan unfold. But for now, we have another day of waiting.

For Her. Bobbi


November 21, 2013

I don’t know what kind of prayer warrior brigade I tapped into sending out my last entry, but pharmacy just called and tomorrow a 7 day emergency supply of Afinitor will arrive at our front door. Wow……let the journey begin.

For Her. Bobbi


unbelievable

November 21, 2013

Well, you all will never believe it, but all medication went through insurance today and we will only have a $50 copay for a 3 month supply!!!! I am beside myself. It all feels like it went from 0 to 100 miles an hour in one day. I have to call the suppling pharmacy tomorrow and set up Bailynn’s account and Cincinnati is hoping we receive it before the emergency medications run out. How much can change is one day!

For Her. Bobbi


November 23, 2013

At 9:15 am Bailynn took her first pill of afinitor. It begins….. Sent from 


Our arch nemesis, Insurance, strikes again!

November 26, 2013

Well, though the medication is “approved” it is in lockdown mode, cause it costs over 9K a month. This puts a flag and extra process on it to receive it – which I was just told today. The doctor also ordered a 3 month supply of it….so that math folks is over 27K worth of medication to land on our door step. Wow. Wow.
In the meantime, I have called Cincinnati and told them that we are going to be needing another emergency supply of the medication. We have 3 pills left.

Day 4 of Medication:
Day one went fine, Day two Bailynn’s stomach was upset and she ended up throwing up all her dinner Sunday night. We believe it was the increase in drugs in her tummy and it proved to be too much too quickly. Day three went smooth and we are now staring down day four. She has been happy and there has been no visible change (like mouth sores) or noticeable discomfort. I had to fill out a medication list last night for the delivery pharmacy and took a moment to absorb the fact that Bailynn went from being on 3 meds for constipation, a face cream for acne, and a breathing treatment during winter months, to an added pill for mouth health, mouth cream, mouth wash, and Afinitor. Looks bad on paper. It has been years since our med list was this long. It is time to make up new med cards with the full list and dosages so I don’t have to regurgitate this everywhere we go by memory. I’m trying to find the groove with all the medications as well. After our tummy issues Sunday, I’m experimenting to find the right times to give her meds as to not overload her system and make her sick. So day four….we have our backpacks and walking sticks. Hope you have yours. This journey is going to take awhile, but it is so worth it if the medication is half of what it claims to be.

For Her. Bobbi


WooHoo!!

December 2, 2013

Medication is on it’s way! It is set to be delivered Wednesday, just a 2 days shy of running out of emergency pills, and we will have an 84 day supply. Bailynn has now been on the med for 9 days. Everything has been going well. She has not had any mouth sores (knock on wood) and she has only had some tummy issues. All of her sisters have been sharing sick and we have now implemented strict hand washing, hand sanitizer, and no kissing sissy policies while sick ravages our ranks. It’s been an interesting 9 days to say the least. We go for her first set of blood draws on Saturday morning. She has to fast – she’ll hate me. This will give us a better picture at what the med is doing to her organs. Hopefully everything comes back well and we continue with no hitch. Now to keep sick away from her and sit back and enjoy the glow of the Christmas tree and this time of year. Definitely not ideal for trying to stay well, but a beautiful time to reflect on all that has happened and may.

For Her,

Bobbi


Let it melt!

December 7, 2013

Medicine arrived on Wednesday and today marked 2 full weeks of being on it. Bailynn has had some issues swallowing and looks sleepy with big dark rings under her eyes. She’s honestly just not her usual chipper self. I took her to the doctor on Thursday because we were really concerned about her not eating. She seemed to be struggling to swallow anything and was nursing her cup in a weird way. When she did get liquid in her mouth she would attempt to let it run down her throat and then gag on it. It was a long couple of days. She only weighs 56lbs. The last thing she needs is to lose weight. So, I called Cincinnati, told them what was happening, and they told me to have her throat looked at. Their concern was mouth sores in her throat or strep…..well, happy to say NOPE! She is getting a molar in the back of her mouth! What?! Something normalish is making her not want to eat!? That is so off. Her throat looked fine. She looks fine. So far so good, despite looking wiped out. So here are some things to pray about. First, Bailynn was supposed to go and get blood work done this morning to mark 2 weeks of being on the medication. Due to the outrageous amount of evil white stuff on the ground, we’ve decided to take her tomorrow morning in hopes that he roads are better by then (and Bob is currently shoveling our crazy driveway). What is one day right?! I hope the doctors are cool with it as well.

Next. Bailynn is having to take a vitamin that is called L-Lysine. It, no lie, is the size of a small puppy. Ok, maybe not that big, but it is HUGE!! It is to promote mouth health and potentially fight off mouth sores and throat issues. Well, this dumb huge pill is being ground and put into her cup…..Bai hates yucky things…..and she won’t drink it! It does taste like pure poison to be honest. When she attempts, more is left in the cup on the side than in her belly. So, we have scoured to find it in liquid form. Hooks Pharmacy on the east side will make it
and flavor it (I should mention that this vitamin is over-the-counter and in no way covered by insurance – Yay!) for the low low price of $50 for a 14 day supply. Ok, so $100 a month for a vitamin – AHHHHH!!! She’s taking
a pill that is like $300 a day. She doesn’t want her boost since the start of this med and is basically drinking Odwalla juiced smoothies that are $2 a bottle (afinitor messes with taste and I assume it is more flavorful than
the boost right now) and that isn’t including all the other meds she is running on everyday. She is
basically liquid gold people. Her queen status is solidified. For Christmas Bailynn would like Odwalla LOL!! She is cracking us up! Today we are tucked into our cozy home and watching Christmas flicks. I may even get some much needed house work done. Tomorrow we venture out into this winter mess, or some of you may consider it a wonderland, to find out just how her organs are doing on the med. Is it spring yet?! I’m over it.

For Her! Bobbi


Blood work results w/ a side of ice

December 9, 2013

Well, we ventured out into the slushy white mess yesterday and got Bailynn’s labs drawn. I’d compare ice and snow to trying to trudge through a sandy beach with her wheelchair, however I’d prefer the beach. The hospital looked like a ghost town. I don’t think I’ve ever been to an emptier hospital before in my life. The lab informed us, upon arrival, that Bailynn needed a urine sample. Kind of hard to do on the fly when your kid wears a diaper, so we will be dropping that off one day this week after I cath her for a sample. I will be better prepared for next time.

Good news comes from the test results we have attained. All of Bailynn’s organ functions are normal, well Bailynn normal. There will be another test of her kidney’s function from the urine sample. They are also waiting on the Afinitor levels in her blood. Apparently those tests take longer. It could be that Deaconess has never ran this test before, who knows.
So I’m feeling a whole lot better about all this. Despite her issues swallowing, her chronic look of sleep deprivation, and her less that chipper demeanor, she is doing fine so far on the medication. I have a child taking a cancer medication. Weird to say. I’ve always described TS to people as Cancer that isn’t cancer. When you think about it it is very similar though. Bailynn has tumors (angiomylipomas) all in her body. They grow exponentially. Her organs suffer from it. The difference is that the tumors from TS are not a foreign organism or cell structure, they are formed of that organs tissue. No matter. It feels good to fight. It feels good to have ranted and raved and found a place and people who were willing to wage the war with us. It feels good to see her and know I am doing everything in my power to give her a life – not in pain – not in suffering. It feels good to tell the girls that we are fighting for their sister together. They are on board. Thanks for the constant prayers and support. Bailynn has been at this for 13 years and never a day goes by that we don’t know how loved she is. Thank you.

For Her. Bobbi


4 week mark

December 22, 2013

Bailynn has been on Afinitor now for 4 weeks! I can’t believe it has been a month. She is still doing really well. We finally got the test results for the Afinitor levels and Cincinnati called to discuss them on Friday. Her levels were at 3.8. Therapeutic levels for this drug are between 3 and 8. I kind of like the fact that she is on the low end. They asked if we had seen any side effects. My response was, “I will say this while knocking on a giant LOG! No!” This is most likely due to the fact that the levels are so low in her system. The nurse made the comment that Bailynn must have an extremely high metabolism. Hahahahahaheeeeehooooo! You think!!! My super model skinny kid may have an extremely high metabolism! Yup, maybe. So, she is on a dose that should be giving her higher therapeutic levels, per her weight, but isn’t. Still, I’m ok with that. I will take lower levels and no side effects.

I was asked by the nurse to start keeping a journal of her seizure activity and any “changes” we may see. I asked her what kind of changes and she said really anything, even if it is small to us.
So here is what has changed so far.
Bailynn is a little less cloudy. That is the best way to say it. She will look more directly at people, still with a

scowl mind you, and will hold decent eye contact. Before she would look at people and then she was over it. She cries when we get home from running errands! She loves being out and about! Can you say TEENAGER! 🙂
I have seen her more engaged in her toys. She hasn’t really used her right hand much at all since her brain surgery, but I’ve seen her right hand making circles and attempts to be more active in rattling the tar out of her toys.

She has completely changed daily food routine. She loves Coconut Milk and Odwallas and not so much her boost. She will drink it, but the gusto (or the way she would drink them like it was her last meal or first one in forever) is gone. She sips them….this is so not like her, but she sucks down the Odwallas – especially the strawberry ones.

Her sleep schedule is altered. She use to take a lot more naps during the day and now she wants to be up and sitting in the family room watching her crazy sisters do their school work or run around. She’s completely in love with the Christmas decor and her new AMAZING iPad stand Grandma and Grandpa got her for Christmas that puts her iPad right in front of her anywhere she is! It has been years since she was this happy to be out of her room and “bothered” with the crazy. I think the last time she liked it was before her rods-in-her-back chaos! I mean 7 surgeries, a near death experience from staph infection, a PICC line with antibiotics for 3 months, an addiction to Valium, Rods coming through her skin and new rods 5 months later….I just don’t know why she started being reclusive and wanting to lay down all the time – can you?! 😉 She’s been through Hell and here she is happy and surrounded by her sisters. It’s my Christmas Miracle!

So far, even with us all having a small cold, she has been healthy on the drug. We are diligently washing hands and making sure she isn’t around sick people. I take the extra few minutes to wipe our carts down at the store and beg the girls to not just go around and touch everything! We wash our hands to the point that the girls didn’t realize they had dry skin on their hands (oops!).

We are counting down the days to Christmas and enjoying these new changes in Bailynn. Mark it on the Calendar folks – 2013 – The year we found someone/something! for Bailynn!!
A lady at Target asked me today what I wanted for Christmas. Honestly, the older I get, the harder this becomes. I really just want my kids to have nice things (or money towards college cause please no more
toys! LOL!) and Bob to get things he wants. I feel content and surround by my gifts everyday, but this year in particular I feel like my gift came. My fight. My miracle. I told everyone I was so sick of not having a path. I saw no way of helping a person I love more than anything. So Santa did his work early and gave us Cincinnati and Afinitor. It didn’t come in a box (well, ok the pills do come in a box technically), but it was the most beautiful gift. Christmas is a little bit more……

Merry Christmas. I hope everyone has a wonderful Holiday!

For Her Bobbi


It is January 2014!

January 13, 2014

I can’t believe how fast time flies by sometimes. It is already Jan 13, 2014. Christmas came and went with lightning speed! It seems like the tree was up no time at all and now I just wish it was spring! I’m over all this cold!
I think is also because we surprised the girls with an above ground pool for Christmas -got to love cold weather clearance on Pools! Only we would go buy a pool in the middle of the winter! We are so looking forward to it going up this spring and building a handicap accessible deck. Bob even picked out some stairs to go down into the pool instead of a ladder, so that I can get Bailynn in and out on my own – hopefully! Bailynn will get her favorite kind of therapy at home – aquatic therapy! I am so looking forward to it!

This is the year Bailynn would have started High School also. Yes, I think about those kinds of things. This year she would begin the journey that would lead to College and her future. I remember my summer before High School. I made new friends, started marching band, dreamed of driving….I didn’t have a suction machine in my room, a cough assist machine, diapers, wipes, medication and a nurse that came. I didn’t have to worry about my liver, heart, kidneys, or seizures. I look at all the petty things teenagers complain about and wish they could meet Bailynn. Maybe the world would shine differently for them. Maybe they could see everything they were given. God’s gifts come in different packages. Life is hard. There are no magic buttons that fix everything. How could Bailynn share her message? She has such a powerful story.

So, for the update – Bailynn has been coughing. It is not so much a “sick” cough as a dry cough. She has been doing it a lot for the last 2 weeks and of course more at bedtime than any other time of day. Coughing is a side effect of the med, but who knows if that is why she is doing it. I called her pediatrician’s office to see if they could see her last Friday and her ped. is on vacation through this Friday. If she is still coughing through Sunday, I’ll call on Monday to be seen. I really hate taking Bailynn to a doctor’s office however, that place is germ central! All the sick people gather there ;).

I’ve been sick. I’ve been fighting a sinus infection since before Christmas. I am now on my second round of antibiotics and for the first time in weeks my ears don’t hurt and I can swallow without wincing. No fun to be sick and freezing! I have never had to have 2 rounds of antibiotics for anything! Thankfully everyone else has been pretty healthy.

Now to get 2014 rolling. We have our first follow up appointment at Cincinnati on February 26th. We should get scans and be able to see if there is any improvements so far. This will most likely determine if they up her dose of the medication as well. Remember she is on the low end of the therapeutic levels in her blood, so if they see little improvement they may bump up her dose. I also took the time to let her former Nephrologist and Urologist know that we will no longer be seeing them for sure. I hadn’t formally let them go before now. Feels good. Here is hoping all the test results come back great and her blood levels and organ functions stay sound. Thanks everyone for the continued prayers and support. Love you all and I will keep everyone up-to-date as we learn things!

For Her.

Bobbi


Bailynn vs. the cough

January 15, 2014

So yesterday I broke down and took Bailynn to her pediatrician’s office after a long night of coughing. Her pediatrition is still on vacation, so we saw the Nurse Practitioner. She prescribed Bailynn an antibiotic to treat sinus drainage that she believes may be causing the cough, even though there was not a lot of evidence just the sound of the cough. I called Cincinnati twice yesterday trying to find out what to do about the afinitor, so I held it just in case. It wasn’t until this morning that I got a call back and it wasn’t exactly pleasant.

The nurse I spoke to is very concerned by Bailynn’s cough and doesn’t want her taking the afinitor for the full 10 days that Bailynn is on the antibiotics and not until Bailynn is not coughing at all anymore. I figured this would be the case because the afinitor tears down Bailynn’s immunities and the antibiotic fights to build them back…..two drugs fighting each other in an all out war is not going to get her better. Then there is a rare but serious side effect that causes coughing with afinitor. It is pertinent that we find out what is making Bailynn cough, the sinus drainage or afinitor.

The nurse recommended giving Bailynn an allergy medication as well, funny that this is exactly what I am having to do on my second round of antibiotics with a sinus infection, and so this morning Bailynn got zyrtec and her antibiotics. She is still coughing away. I’m hoping in less than 10 days the cough goes away and the afinitor can begin again immediately after the antibiotic stops. Maybe Bailynn can get some sleep. A bump in the road, hopefully a short small bump…more of a hiccup. So keep praying the cough ends! Keep praying that the afinitor can continue. The nurse said on the 26th of February that they’ll have to evaluate wether or not Bailynn can continue on the medication – She will be able to! She will!

9 more days till we know about the cough and the antibiotic and the afinitor. Another countdown – We are so use to these….
For Her.
Bobbi


Bailynn Wins

January 20, 2014

The cough has been smothered!! Bailynn hasn’t coughed but one time in the last 48 hours. She’s had some good sleep and the dark rings under her eyes have subsided. That may also be due to the fact that she hasn’t been on the afinitor for a week now, but that’s ok. She is doing much better and when her antibiotic ends in 4 more days we will resume the afinitor. I am anxious to see if there has been any changes in the angiomylypomas in Bailynn’s kidneys. I anxious to learn if the ones in her liver, that were new, are still there. I’m dying to know if there has been a changes in her brain! Can you see how a month of more wait time is going to be filled with hope and wonder. I am so excited to see if this medication has made any changes. To the new year and cough free! Onward. Thanks for all the prayers and messages. She can do this….one day at a time. I finally feel like we have a leg up – we are almost winning…

For Her. Bobbi


January 28, 2014

Bai started her Afinitor again on Saturday. She’s thrown up almost every day since. Not sick throw up, more like upset tummy. I’m hoping she gets use to it again quickly. This happened when she started taking it originally too. I’m hoping she gets some good rest tonight. She woke me up this morning with a very violent seizure, and then was fine – only Bailynn.

Keep prayers for her going. This med is rough and it is obvious that her body doesn’t really enjoy it. For her

Bobbi


Bai and Bess

February 4, 2014

Bailynn and her buddy Bess hanging out and watching her crazy parents workout. Her and Bess have been snuggle partners for 12 years. Bess has breast cancer, but that doesn’t stop her from loving on Bai. Here’s pics from tonight and from the day we got Bess ?.

Bai’s been doing better. Still having some issues with nausea, but not as bad. Went to see the GI today and found out the laxative like med she takes causes nausea as well – so that may be the issue. Poor Bailynn is on 2 meds that make her feel sick and a handful of others that I’m sure don’t help. We go to Cincinnati in 22 days! Fingers crossed!

For her

Bobbi


We find out….

February 24, 2014

After 3 months of Bailynn being on Afinitor, this is the week we will find out if it has done anything. We head to Cincinnati on Wednesday and get a CT scan along with having a doctor’s visit with the Nephrologist and Neurologist.
At first they were not going to do any scans, it even took me making multiple phone calls, but after much discussion the RN finally spoke to one of the doctors (about Bailynn’s most rare case) and low and behold we had a CT scan scheduled. We have to be there at 11:45 Cin. time and the scan will begin at 12:45. We than don’t see the doctors till 2 and 3. This should assure that we have the results of the scans when we see the doctors. Bailynn has been doing really great lately. She still is queasy looking and has dark rings under her eyes, but she is happy and playful. She has been attempting to use her right hand, which she all-in-all believes is completely unnecessary, more often. She has been more giggly and interactive. Her seizure activity has not improved or diminished, but I’m honestly ok with that. Seizures we have learned to live with. No, we do not like them or want them, but they are simply part of Bailynn.

Also, Bailynn had some blood work done a week ago and the levels were really high for the Afinitor. They went from being 3parts in her blood to 12.5. That is a significant jump and they don’t really know why. I’m sure this will be addressed more at our visit. If she was having other complications they may be more concerned by it, but she is not so they are not. Just another pleasure of having a kid with a rare disorder…Her urine analysis had too much protein in it as well which leads them to believe she may have a UTI, I don’t think she does (she’d be whining and upset) but we are going to be taking in a sample AGAIN to have it tested. She hates me having to cath her, so I’ve been putting it off. Bad. Oh, well.

Bailynn has a “tumor” growing out of her cuticle. It has been there a long time. We even had a dermatologist look at it years ago. It has miss-shaped her nail slightly and it was roughly half way up her nail. It has shrunk by over 50% since she started the med! OVER 50%!! and that is a tumor on the outside!!!! Her skin has improved and some of the “orange peel” looking places on her skin have diminished in size or gone away! It is like magic…..real true grace filled magic. It’s hard to contain my elation over it and my hopes are super high for these scans on Wednesday.

Hopefully Wednesday will bring us good news and 2014 will be the year that we can mark on the calendar…the year the tumors shrunk! May it be so! May the doctors who dismissed her at Riley be proven wrong. She is so worth it. Bailynn Drew Hammonds will not be dismissed! She’s a fighter!! She lovingly drags us along for the journey. It’s been quite the journey hasn’t it – she says, “You’re all welcome!!” 🙂

For Her Bobbi


results – sort of

March 4, 2014

So we have waited and waited and waited. The reason for such a delay in the update is I DIDN’T HAVE ONE! No lie, we sat in the waiting room and our appointment time came and went. Then when we finally got back to see the doctors and the scans had not been read. We basically had the same conversation that we have with Riley Doctors. “So nice to see you, see you again in 3-6 months.” Essentially because they had no results. Insert frustration HERE!! So our appointments that should have been over by 3, lasted till 5 and we had a 3.5 hour drive ahead of us. Lila got sick – than me! It was horrible. We had no answers, we were exhausted, and then ill beyond belief. I’m still trying to forget. I spent Thursday on the sofa praying for relief and sleep. Thank goodness the girls were as exhausted as me.

While we were there, a genetic counselor came in. She approached us about genetic testing. We have crossed
this bridge a few times, but the cost always seems ridiculous. Is it worth spending all the $$$$ to have a test say Bailynn has what she has….to us, not really. The woman stood in front of us and said – this in not a joke – some
people with TS, only around 5%, have this rare (emphasis on RARE) genetic anomaly (remember only 5% of
people WITH TS) that effects their kidneys worse than any other organ…………process…………..Uh, Bai has that. Th genetic counselor asked how we know. I have to say I was wondering at this point if she had seen Bailynn’s
case file. Trust US Bai has that. 5%, she can nail that! Easy Peasy! I don’t need a stupid test to tell me that her
kidneys are or aren’t “going” to be affected worse, cause they already ARE!!! So, she went on to say that there
are “special” things to be done for people with that specific 5% marker (THEY ALREADY BETTER BE
DOING IT FOR BAI!!!) {deep breath} We told the genetic counselor that we would have the testing done IF
she could get it pre approved and paid for. It is more for them, than for us. We are aware that Bailynn has
Tuberous Sclerosis. It makes no difference to us what a test says. It in no way impacts or changes our lives. This
is simply for them.

Ok, now for the results (don’t bang any drums, it’s not that great). So, the message left simply says nothing
looks worse, though they don’t have great comparisons (remember I took all of her old scans and readings in
Nov, but they have no comparison *scoff*). There is a “place of concern” and the nephrologist will have the radiologist read it again. ………that was it. really. Ok, so good news, nothing looks worse (though they really don’t know since they act like they have no comparison). Bailynn over all seems fine. Some of her exterior markers

are diminishing, so the interior ones have to be as well. We have no idea if they want to see us again in 3 months or 6. I will try to contact they again today, but I have little luck on that front. Our next round of visits will be at Riley next month sometime and I honestly have to say that I am looking forward to my comfort zone a little bit.

So there is the long awaited update. Bailynn’s journey is forever going and hopefully the next update will bring more and better news. Till then.

For Her. Bobbi


days turn into weeks of tears and screams

April 15, 2014
Tis the season for screaming and crying….

Bailynn has had a really rough couple of weeks dealing with pain. Yet again we have no real idea as to what is making her so incredibly upset. I have taken her to the doctor and had tests run, scans taken, throat swabbed, and urine analyzed – results have conclude that nothing is “wrong”. She has a lot of tummy issues with constipation and gas, but with all the meds she is on for that I don’t know how that could be upsetting her so badly. However, the meds themselves could be upsetting her tummy.

The only thing, that raised any kind of flag, after scans and seeing the doctor, was a scan of her right leg. She has begun to make her bone in her leg seemingly warp due to holding her foot at a bad angle. She has had a lot of issues with this leg throughout her life (as a result of the brain surgery and loss of muscle strength). After an achilles tendon release surgery, serial casting, and dafo leg braces, we had thought it was under (somewhat) control. Well, yet again Bailynn has found something to be concerned with. She screams like a lunatic most days and mainly when I touch her leg or make her sit up too long. She much prefers her bed and our home. Going out has all but sent her over the edge, and me. It is completely breaking my heart. My kid who loves going out and to the movies is miserable and unhappy. The tylenol with codeine, that is our typical go-to, isn’t working. So this is what we are about to do…… Next wednesday, April 23, Bai will have botox in her foot, hip flexor, and hip adductor in the O.R. at St Vincent’s Children’s Hospital in Indianapolis. We will drive up Tuesday night and have to be in pre op at 6:30 am. Now we haven’t actually seen her orthopedic surgeon. We had her scans mailed up to Indy from here. After many conversations with the nurse over the phone, she has told me that the Doctor may see the leg and feel that botox isn’t the answer. I am not even thinking out what happens after that yet. The other scenario is that the botox is done and no real results are seen. Just pray the insurance believes it is a viable procedure – in the past they haven’t.

For Her. Bailynn


At St. Vincent’s Children’s Hospital

April 23, 2014

We are in pre op area waiting for doctors to come and talk to us before Bailynn’s Botox. She’s asleep, waiting to be put to sleep – seems funny!

We are also waiting for her GI from Riley to call. On Friday we took Bailynn for scans of her tummy, because of the continuing screaming. The scans revealed “dilated loops of the bowel with inflammation”. That was Friday! It is Wednesday and we still don’t have a game plan for help. She is not eating well and still very upset. Hopefully her GI will call this morning.

Here’s hoping the Botox goes well! I’ll update later on that and the bowels. For her.
Bobbi


Dislocated hip.

April 23, 2014

So, the scans I took Bai to in evansville on 4/1 showed she had a dislocated hip!! Not until the scan Friday was it reported! She has been screaming and crying like crazy cause her hip and the socked are rubbing each other. The hip is not all the way out, so no surgery is needed at this time. Her dr is hoping the Botox will release the muscle enough to allow her hip to slip back into place. Apparently she has a shallow hip socked to begin with. We will return to Indy May 20th for scans to check on it. For now she will start Valium and a muscle relaxer. She also has to sleep with a funky pillow between her legs and use is as much as she will tolerate it awake. Only Bai! 🙂

We are hoping this solves the chronic screaming and crying. Maybe she’ll eat!!!!!! We are so upset and our minds are reeling that this could be overlooked for so long! Her GI is the one who caught it! Her GI!!! Ugh!!! Now to get out of here…..and home!! Our pool is going in today!! Something fun to look forward to!!

For her. Bobbi


good vs bad

May 16, 2014

So for the last few weeks we have had our ups and downs. Bai has spent many days screaming and crying and miserable. She has fought food, sleep, and joy. The last couple of days we had seen a turn around and she seemed to be feeling better. Her birthday on Sunday, she turned 14 on Mother’s Day, even went off without a hitch. Then today we went to run a few errands and take the twins to swimming lessons when all the sudden the rage and pain hit like a tidal wave. She goes from being fine to hysterical within minutes. We wrapped up errands as quickly as possible even omitting some and got her home and into bed. She is doing better now laying down. I just wish I knew what the change was. I wish I knew if it was a position or the way I lift her, but I’m clueless.

So for now we try to minimize movement of her hip and watch it. She has pain meds on standby for days like today. It was recommended to get her into a hot tub to get her muscles to relax, but we just had a pool put in and

hot tub is not in the near future. I did go and browse the “free” ones on craigslist. If you need a good laugh, go browse “free” things on craigslist – there is a reason they are free OH MY! Our pool finally went in after a disaster of hitting ground water, the ground being to squishy, them digging to deep, and us having to deal with drainage issues and the aftermath, but it is up. We are having a deck building party tomorrow to get the pool connected to our back porch. Everyone is welcome to come and help or just come and hangout and see the girls and chaos. We are hoping the pool will provide much needed therapy for Bailynn’s legs and hips (when the weather agrees again and the water gets warm). So if you have some downtime tomorrow and want to swing by, you’re welcome to.

Side note on pool:
So yes, the pool has seemingly hit road bumps at every turn, but the greatest thing happened in the process – this is the story.
We bought the above ground pool last fall, on clearance (heehee) cause it was fall! We had been looking at them for years and decided this would be the year and we would give up vacation to do it for the girls. Bob snuck off to the pool store and bought it in secret. It sat is a few huge boxes in our garage (until a week and a half ago) and at Christmas we surprised the girls with it! Yes, they hadn’t noticed it in the garage and no! we don’t know how!!!! I fear they will not be detectives as grown ups. 😉 This spring Bai started feeling bad and we scheduled her appointments for botox for April 23 – of course this is when they called and said the pool could be put in (smh). With the help of our mothers, Bob and I got it all scheduled and worked out. The lady from the pool place didn’t understand our dilemma with being gone and I told her a very very very summed up version of Bailynn. She was intrigued and asked more. I explained to her what Bai was having done on the 23rd, that she had had brain surgery and how we had bought the pool as a therapeutic tool for her at home. I also told her how Bailynn really doesn’t like cold water – it’s for the birds. She was so nice and we hung up. After about 30 mins she called back, she explained how they were having an open house and they were giving away a few things. One was a solar heating panel that easily attaches to your filter system and heats the pool water. She said they were just giving it to Bailynn. Insert shock here. I can’t say how grateful I felt. This spring has seemed seamlessly evil and the small gesture felt huge. So Bai is the proud owner of a heating panel (it looks like a solar panel) to heat her water. Even though everything has been a disaster since they started digging for the pool to be placed, some things have worked out. Now to get the deck built so I can get her in and out as easily as possible and hopefully get her feeling better.

We go to Indy next Tuesday May 20th, to have her hip looked at again and her rods in her back. A quick up and back!
Another good note, Ins did cover most of Bailynn’s botox on the 23rd. In the past, the botox has cost us thousands of dollars and thankfully we will only owe around 900$ from this trip, I feel relieved!

So another bad day, but maybe tomorrow will be good. We’ve had a few good ones. I like the days she doesn’t scream, she smiles, and she enjoys life. Days like today are hard. Her scream rock us all to the core. Maybe she will enjoy the deck building for her tomorrow!
For Her.

Bobbi


June 18, 2014

It has taken me a while to be able to sit down and write an update. Trust me I’ve had an update, but it’s hard to write smart and concise sentences without bursting into tears – so here I go. I’m officially over 2014. Bai has struggled with pain, eating issues, and basic unhappiness since the turn of the calendar. We have had unusual bad luck (and no I don’t really believe in luck, but this is the only way I find I can express it). So let me pick up where I left off….The deck building, let’s begin there. The girls and I ran a lot of errands to pick up items for our “Deck Building for Bailynn Party” in May. Bailynn was unusually grouchy and whinny and the trip to get everything was less than a success. We ended up having to cut the errands short and come home. I got Bailynn situated into her bed, did some tidying, and then heard the heart wrenching sound of her vomiting in her room. This happens so often lately. When I got there I was beyond startled by the sight before me. She was covered in dark brown vomit that appeared grainy and smelled horrid. I got her up and cleaned up, I cleaned her bed, and had to toss the rug that was in her room in the trash. I began the string of phone calls to doctors telling them what was going on and with little leg work discovered that Bailynn had thrown up old blood. I have seen a lot,

we have dealt with a lot, but this was the first time I have been truly disturbed by what I was being told. She was however absolutely fine after her body rid itself of the troublesome blood and she even ate well. We kept an eye on her and with a Riley trip only 4 days away, we decided not to rush her to the ER at Riley. The GI on call at Riley told us to take her off the Afinitor for the time being because it can also cause stomach sores. Then our little dog Minet started throwing up. Ok, if you have dogs you know they throw up – a lot! I really didn’t think a whole lot of it. I knew she was prone to eating things in the backyard and just being a goofy dog. Minet being a Jack Russel Terrier, had spunk to spare. So, I’m desperately worried about Bai and now the dog is barfing and the deck preparations are still in need of work. We headed into the weekend with a lot going on and the deck building couldn’t have more of a success. Despite the pool people digging the pool too deep, the many deck revisions, the ground water we continued to hit (even when digging for the deck posts) the deck turned out smashing! Bailynn’s wheelchair can wheel right out our back door and we can transfer her into the pool, well when it gets warmer. We had an amazing turn out of people who were well skilled in building and even those who hadn’t built a deck before lent hands and helped until it was complete. Bai is still not herself and the dog is still not doing well at this point, but the deck is done. Bob and I continue the work on Sunday and a trip to Riley on Tuesday can’t come soon enough. Then Monday came. Monday May 19th. I hate that day. I will always hate that day. It was the worst day in a long time. Our little Minnie (Minet) went out to go potty in the morning and after lunch wouldn’t walk. We loaded her into Rocket and rushed her to the vet. She had been poisoned. Her blood levels looked as if she had eaten antifreeze. The best we can figure is the ground water we continued to hit that smelled awful and had a weird metallic tinge had run off from chemicals or something in it and she drank it or ate grass coated in it. The vet said they’d flush her kidneys and try to get her stable. We were told we could come and get her Tuesday, but that her kidneys may never be the same again. At 6pm they called and told us she had died. I have never seen my children cry as they did when we received this horrid news. Our little spunky dog was gone (I will disclose we have 3 other Jack Russels — Bess (minet’s mom) she has cancer and is nearly 13 years old, Charlie (Minet’s dad) and Bridget (Minet’s sister ) — ) none the less the loss was beyond tragic. Monday night Bob spent in the garage building our little dog a box to bury her in, after we returned from our trip to Riley Tuesday. Our whole family was devistated. The girls and I headed up to Riley early on Tuesday morning with heavy hearts and tear filled eyes. It was so surreal that our little dog was gone. Our first stop was dental, this is were the day goes bad, they found that Bailynn’s throat was coated with mouth ulcers. The blood was determined to have been a result of Bai swallowing blood from the sores for an undetermined amount of time. Bailynn threw up all over the dentist and they weren’t able to continue (finish) her teeth cleaning. We loaded rocket and headed to St. V’s children’s hospital to see Bai’s orthopedic surgeon about her hip but had to grab some lunch first. I decided that eating in the hospital cafeteria would be simplest. We got our food sat down and started to eat. When I found myself sitting in the quiet of the hospital cafeteria, surrounded by my solemn children, I burst into tears again over Minet. I spilled my coffee all over me. Nurses rushed to help me clean up and all I could think is that these people probably believe there is someone in the hospital dying that I know – nope, just my dog. We wrapped up and headed to get Bai’s hip scanned, again with random outbursts of tears, only to discover her hip is out worse. The option is a surgery to release Bailynn’s hip abductor and hip flexor and for her to wear a body cast for 2 weeks (I can’t even imagine how that would go)…..So to sum it up. Bai threw up blood. Our dog died. Bai had mouth ulcers down her throat. Bai’s hip is worse. We still had to drive home and bury our dog. Can you see where the update was hard to start? Hard to finish? Bailynn has been off all her meds except her muscle relaxer and a med to help the lining of her stomach since this all happened. When we decide to re-administer the afinitor, it will be an every other day occurrence due to the issues. In the mist of all that chaos, it took Cincinnati almost 5 days to return my initial phone call about her vomiting blood.

Things have settled down here. We still have a lot to do to recover our backyard from all the work that has been done, but we’ve had a lot of help from friends and family. Bai still cries and whines a lot. We still miss our little dog and even as I type this nearly a month after it all happen I find a fresh stream of tears. We are still trying to determine whether or not we are going to go forward with the surgery to release Bailynn’s tendons. Right now we are hoping the muscle relaxer, and eventually the pool, will help. The summer has finally deposited some warm days on us and the pool has to get warmer (right?!). I hope everyone else’s year is on a better path. We keep going on despite it all just hoping for better. Hoping Bailynn has good days. Hoping she finds happiness and comfort. She needs Comfort.

For her. Bobbi


Surgery

August 6, 2014

After months of trying to get Bai’s hip to recover on it’s own with stretching, positioning, and muscle relaxers, we have failed to make any great dent in improving it. She will therefor be having a surgery to cut her hip adductor and hip flexor on Aug 20th (Happy birthday to cousin Will and my Memaw on that day) at 8:30 am (Indy time). The procedure is 2hours and she will have to stay overnight. She will then be in a soft body cast for 2 or more weeks to keep her leg straight and help lengthen the tendons as they mend on their own. We are desperately hoping this will prevent any kind of hip surgery and to keep her hip from slipping the rest of the way out. I will try to keep everyone posted on her recovery and how the procedure goes.

For Her Bobbi


Cincinnati Tomorrow

August 12, 2014

Bai is going through another round of screaming and crying a lot. Despite all of our best efforts to make her comfortable and discover what is making her so upset, we are once again clueless. Tomorrow we head to Cincinnati for a CT scan of Bailynn’s kidney’s and to talk to the Tuberous Sclerosis specialist about the Afinitor medication. Bailynn currently isn’t taking the medication with the upcoming surgery, but we still need a plan after she threw up Blood in May. It’s been almost 6 months since we’ve seen these doctors. Friday we get to drive to Ky and meet my new nephew for a bit of respite from the crazy and then next Tuesday evening we head to Indy for Bailynn’s surgery on Wednesday. Our wheels are going to be rolling a lot in the next week.

Arwyn turned 9 yesterday! We had a great day of swimming and playing at home. Bob brought home her favorite food from Qdoba and we got to visit with her great grandmother, Mom-mom, it was a wonderful day. She has heard us talking a lot about Bailynn’s upcoming surgery and all of the driving that has to be done, the food that will be bought, and the copays that will be rolling in. She knows that we are locking down on extra expenditures because of this. With her heart so big and her knowledge so deep of what our family goes through, it was befitting last night when she offered up her birthday money to help pay for Bailynn’s needs and surgery with tears in her eyes. My heart broke open in pride and sadness – such a huge burden our family experiences and manages to navigate. Bob and I assured her that we will take care of it all and that her birthday money can stay with her. I’m so proud of her willingness to share and the fact that she sees how hard we work to make it all happen. She’s seen a lot for 9. She has experienced a lot for 9. Our kids know just how expensive having any kind of medical need is.
We have a long few weeks ahead. We are still praying Bailynn’s hip is not fully dislocated. It will make all the difference as to how our fall and winter goes.
I will let everyone know the outcome of tomorrow and then I will update after surgery next week. Thanks for all the continued prayers, support, and kind words. We are truly blessed by our friends and family.
For Her,
Bobbi


Today’s trip

August 13, 2014

We headed to Cincinnati in the dark and will get home in the dark. Bai had a ct scan of her kidneys. The largest angiomylipoma has grown a little. The nephrologist suggested possibly trying another embolization, even though it failed in the past. He said he’d consult with the doctor who does them and get his take on Bailynn’s situation. Her blood work all came back good (in regards to kidneys) for a patient with as advance TS as she has. She is considered to be in stage one kidney disease. The nephrologist says her kidneys are “stable” and will remain so if we can keep the angiomylipomas at bay.

We then saw a neurologist – another TS specialist. He was shocked/amazed/in-awe-of the fact that Bailynn takes no seizure meds. This is the first time we’d met this neurologist that is part of the TS team. He was positive, but worried about her hip. We discussed her skinniness and how we are working hard to put some meat on her. Her afinitor meds will remain suspended for 4 weeks post op. If she needs hip surgery for dislocation, she could be off the med till nearly Christmas. Her kidneys will not benefit from this. We have requested to add a urologist in Cincinnati and are feeling more at ease in this new location. They know us now. They know Bailynn. Now we need to deal with the hip. Please pray, it looks bad. On top of everything Bai has struggled to urinate the last couple of days. She’s been screaming, so I started giving her Tylenol with codeine in an effort to help. I didn’t know, but codeine apparently can affects the bladder. I had to cath her to void today and she has an absurd amount of sediment in her urine. We will be stopping that med immediately!! No one has ever told us codeine affects the bladder! Grrr!! So, another day. Lots of pavement to still travel. We just have 6 more days to find out about her hip and how things will play out. I’ll keep everyone as up-to-date as I can.

For her, Bobbi


August 20, 2014

Procedure has begun. Anesthesia went well. Doctor probably knows if her hip is out by now, but we don’t.

For her
Bobbi


August 20, 2014

Surgery went as expected. Bailynn is such a tough cookie. She has a small incision in her inner thigh and outer thigh. Her hip is out, but wait, it’s also in. Her hip is sitting on the brink. Apparently while she was knocked out her orthopedic surgeon could get the hip to be relatively in socket (still displaced).

He says that despite the surgery today, the hip is so far out, it will not simply slip back in. Bailynn is some-days in a great deal of pain due to the shifting and grinding of bone on bone. Other days she is just fine. If her hip comes out, the surgery to “fix” it could be worse than the hip being out. It’s awful. It is simply an awful fix.

We are resting in her room with her. She’s ate. She’s watching despicable me. She’s very calm and just looking around. The other (horrible) news we got was that Bailynn has lost a significant amount of weight since starting the afinitor last fall. We have had a lot of negative side effects from this medication. We have watched her be terribly sick from this medication. Right now, despite the growths in her kidneys, we have to get her health back. we have to get her weight back.

Hopefully when the pain rises, she will be ok. The surgeon said muscle spasms will be the worst side effect. We just have to make it through the night and then home tomorrow.

For her.
Bobbi


4 months

December 2, 2014

So, it has been nearly four months since I have updated Bailynn’s journey. I can’t believe it is December and that our Christmas Tree is lit. I can’t believe we’ve seen snow. October and November felt like a blink. This is what has happened.

We completely overhauled Bailynn’s diet. I have now officially murdered 3 magic bullets in the span of 6 years. I have found that peanut butter, vegan mayo, maple syrup, honey, coconut milk yogurt, bananas, avocados, coconut milk, and pouched baby food, can create a smoothie that exceeds 700 cal. a cup! Bailynn has put some weight back on, we have a lot more to go. It is a fun task to try and cram as many calories as possible into one cup.

We go on an annual doctor’s appointment week to Indy around the end of Aug-Sept. This year, for the first time since Bailynn started the annual doctor appointments regiment, we made the decision to completely and utterly skip it. Now, we went to Cincinnati in August to manage her meds and T.S. care, but for the first time in years we skipped the on-slot of days and days of appointments and tests. The continual bad news all while crammed into an Indy hotel and the “pretending” of fun, but we didn’t tell the girls this….we told them we were going on our annual doctor appointment week. We even named it “Hospital Vacation 2014”. Then the morning of Sept 27th we loaded our little ladies into “Rocket” and instead of pointing it north – we headed south. The girls didn’t know what hit them when we told them we were BEACH BOUND! Our family needed to rest, to relax, and an alteration from normal days. “Hospital Vacation” came with a heavy, much needed, dose of Vitamin “Sea”. We tried to recoup after a year of struggles and mess. We even saved money (no for real! the real Hospital Vacation is a fortune – silly tests). We found peace and recharged our batteries. The girls were amazing and had so much fun in the sand. It was a week to remember.

Once home, reality was back and the medication was resumed. The news gets a little rotten from here. After 2 weeks on the meds, only taking it every 3rd day, we took Bai for bloodwork and urine analysis. We also discovered that she already had HUGE mouth sores bleeding all in her mouth. She will no longer be able to take the afinitor. The mouth sores on such a little dose are too much of a bad side effect to allow her to continue. Cincinnati has decided (spoiler alert: news getting a little better) to put her on a medication called Rapamune (not sure if that is how it is spelled). It is the medication that Afinitor was actually created from. It has a different chemical composition and might possibly not have the side effect of mouth sores for Bailynn. That is not to say that it won’t. It has the same laundry list of EVIL attached to it, but what other options are there. Again in August, we were told how the angiomylypomas in her kidneys had grown since the Afinitor had not been taken regular in months. We were told she is in Stage one kidney disease with this unknown variable of tumor growth eating away at her functioning kidneys. So, rapamune it is. Here is the shocker – our insurance approved it – with no issues!!! What!?!? How!? We can even get it at Walgreens!!! Crazy talk folks – crazy talk!

Her hip:

Her hip is still displaced. We have really really long days were she is in pain and really really great days when it is like it magically slipped back in (it hasn’t). We have upped her muscle relaxer and by the grace of God a very generous person and family helped us to acquire a hot tub for Bailynn’s use. You have never seen a little girl so happy with anything. She squeals at the sight of it. She loves loves loves it. Her favorite is this little waterfall by the filter, it is truly beautiful to see her face in such joy. Her muscles seem to melt in the heat of the water and she relaxes. She sleeps amazing after her stretching and relaxation time in the hot tub. I can not thank the people enough who made this happen. Next year we will be attempting to make it easier for one person to get her in and out. Right now it is for sure a 2 man job (she’s such a diva). If anyone has seen something amazing out there or has ideas – bring it.

For today, Bailynn has an UTI. She is on medication to help and we are waiting for all the mouth sores in her mouth to heal. When the UTI is gone and the mouth sores cease to disrupt her mouth, we will begin the new med. The 2 week period of waiting for blood-work, mouth sores, and results will drag on…they always do. Please pray this med works. She needs this one to not hurt her little body and to just WORK!!! That is all we ask. Tis the season…Hope everyones Holiday’s are going well.

For Her.

Bobbi


3 thoughts on “Bailynn

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  2. Pingback: For Her | My 5 girls

  3. Pingback: The date is set | My 5 girls

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