99 days

99 days ago Bailynn went into  surgery with our expectations set to high and our stomachs full of butterflies.

99 days ago she had rods, that she needed and we didn’t want, placed back into her back for the 3rd time.

99 days ago everything seemed wonderful and then, the stegosaurus bones came out of her back. Since then we have had 3 collagen injections, multiple more trips to Indy, and one to Cincinnati. We have gradually went from stegosaurus bones to Quasimodo (in my head at least). I am trying to take a lighter look at a situation that is nothing but horrible.

There are still protrusions. There are still complications with seating, laying and overall protection of the area from getting pressure sores. There is still guilt and joy over the outcome.

She has honestly been doing very well. Despite some more lack luster scans of her kidneys, her hips becoming more displaced, and some outbursts of pain. She is over all….well. She is eating, putting on weight and playing. She gets frustrated by not being allowed to lay flat on her back and by some of our seating modifications, but she’s just going to have to get over it. We all are dealing.

99 days. Hard to believe. We count down, we count up. The days zoom by.

Summer is clawing towards its close, and I could cry. This summer has been eaten up. Our lives have been swallowed by her back, yet again. She hasn’t got to swim once with the pool open. She hasn’t been allowed in the hot tub. She needs a do over – hopefully next summer. We hope for the next of everything.

On top of the crazy focus on her back, kidneys and other medical needs, we have started the process of attaining guardianship of her. Yes, we have to get guardianship of her for when she turns 18 next May. This is to manage her medical needs and finances (roll eyes here). She’s going to be 18!! Can you believe it!?! Me either. We have a lawyer who has filed all the documentation on our behalf, we have a court date, Sept 7th, and then we are set to continue care of our own child….please giggle, roll your eyes, anything! haha. We also have to have an in home interview….seriously. Yup.

Our summer summed up in a few lines. Insanity.

The worst part is my heart dealing with the struggle of it all. I’m human. My brain strains to piece all this chaos together. My heart tugs at thoughts it shouldn’t have, like how we should be planning her senior year of high school. How, instead of CT scans, collagen injections, road trips to doctors, we should be exploring college campuses. We should be laughing and fretting over her walking out our doors and hoping we did our best job to prepare her for the world. Instead, I’m left wrangling botox injection appointments, Pulmonary readings of CT scans to look for lung cysts and coordinating vacation around doctor appointments and procedures. I am seeking pain management options. Trying desperately to ever increases her caloric intake (I have even stooped to blending cookies into her smoothies). No college banners. No desperation over rejection and acceptance letters, nope letters on blood work results, surgery dates and insurance bills. Our life. I tell my heart to shut up, but it still sees the other path. The path I catch myself knowing would be a huge loss to our identity as a family, but there it sits, untouched. Our perfect Bailynn in a different world, walking, joking….but I choose the Bailynn I got and even though my heart rips these thoughts into my brain, I am so glad I have got to fight with her and intern, find me. Find us. Bailynn gets an honorary diploma. She has her masters in Survival. Her doctorate in living. Her specialty in life. How incredible is that.

I hope in 99 more days, I can see this summer with a more positive twist, for now, can we please extend it?! 🙂

FOR HER
Bobbi

so she did

SaveSave

The Battle of the Bladder

It has been nearly a month since I have found time to sit down and update on Bailynn and our family. I have been super busy with my little graphic design business, 5 Pink Peonies, and our family is enjoying the warm summer weather in our pool. We celebrated my husband’s 40th bday and, the next day, 17 years of marriage (21 years of us). The last month has been a relief from stress with a side of fresh worries.  I have tried to start a post a few times, but I find myself angry typing – yes, that is a thing.

So, Bai. Bai has a UTI AGIAN! Not only that, but she is on her second round of antibiotics in an attempt to treat the STUPID thing! We got the fabulous news 2 days after her Bday when she had labs drawn and a culture done. Her bum is roughed up from the meds and diaper rash cream runs dry quickly here. I feel like she is in an uphill battle with these things and she can’t take her Tuberous Sclerosis treatment while taking antibiotics! So after months and months of back issues, no meds, and finally healing from surgery, we are back to no meds cause of these chronic UTI’s. (insert childish kicking and screaming here!)
Bai has been referred to a urologist in Cincinnati to discuss this continual issue, but I know there is no fix for the actual problem. She has to wear a diaper and that simply complicates things. We go June 29th (happy bday Aunt Debbie, Bai gets to be poked and prodded on your day!). She will have some testing done and see an urologist for the first time in over 4 years (we won’t get into why today – that is a long and different story that sent us searching for new care and lead us directly to Cincinnati). They requested all of her urine cultures, analysis, and ultrasounds from the last year. Bai’s pediatrician’s nurse had to fax 32 pages to send all that info!!!! 32! Can you say we have a UTI problem!!! This didn’t happen till we solved her constipation problem, I don’t know which I’d prefer, but it seems we can only fix one…

The girls started their first day of school yesterday. It is so nice to get back to school work after a two month break. The definition that it gives to our day is almost relieving. I can’t believe that Isobel is in full blown freshman school work (though she did do some freshman work last school year), Arwyn is rocking out 7th grade and the twins are smooth sailing into third. Where did the time go?! How are they this big!? Bai would be a JUNIOR in High School! WHAT! No really! WHAT!? I just can’t.

We need these UTI’s to lose and leave -for good!  We need back on the meds that help Bai’s body fight her condition. Summer is in full swing and we are ready for it! Now for Bai to feel as ready for it as us! Last summer was a bust, we have some make up to do!


For Her.
Bobbi

TSC made Us

Bai will be 16 in less than 48 hours. How can this be?!
I feel so incredibly thankful for her, her life, the days we have had, and the future we have yet to experience – good or bad.

I never thought I’d get to celebrate, with her, her sweet 16. By God’s graces, the hands and minds of many doctors, and our undying love and patients for her, we get to have this day. We get to have this memory.

One of my favorite pictures of Bai was taken at Riley just days after she was born, by Bob’s parents. It is framed in her room – discreetly tucked into a shelf. A reminder of our beginnings. It holds in the image the first moments of being Bailynn’s parents. The hopes and dreams we held for her. It contains “Tuberous Sclerosis”. A definition that would tag her for life, not to define her, but redefine us.

Today, as I’m drawing images for different things, other people, I see the photo of Bailynn and my heart needs to feel that moment. I miss those tiny finger and toes. So, I sat and drew it. I made the “moment” a little painting, all drawn on my iPad. Minutes clicking by till 16…how many days and trials have come to pass. How many challenges she has faced since she was this sweet little baby. Years of finding her. Years of discovering small, but meaningful, milestones. Years of fighting. Tears, screams, and exhaustion.

She may not be the little girl I thought I was going to raise. Tuberous Sclerosis was defiantly not something I ever knew would come to consume some of my darkest days and every breath. She is better….I am better….Bob is better…our family is BETTER. TSC could have destroyed us, it could have. I’ll never let those words ruin. We will celebrate what they gave instead of what they took. They made us, well, us. So, here is a piece of my heart, a moment I hold dear. A memory. I hope for many more.

Bai Baby Drawing.PNG

Bai Baby Drawing.PNG

 

For Her.
Bobbi

I have a filter – this is a good thing

It has taken me days to start typing up a summary of what happened with Bai’s CT scans last Wednesday. I always am searching for the right words. The right way to relay the message without hurt, without sadness, and mostly without pity.

The girls and I hit the road last Wednesday and made our way through the states towards Cincinnati. My children are the most amazing travelers, no really be jealous! My only complaint is that they typically need to pee when we are absolutely the farthest from any civilization possible or 10 minutes from our final destination (and they are going to die – always!). Other than the need to pee, my kids never complain about car rides. They are seasoned travelers for sure. All of them were born into this life of taking “Sissy” to the hospital.

We, thankfully, hit one rest stop outside of Louisville and then we didn’t have to stop again. I want to tell a little bit about what happened at this rest stop. We pulled in right behind a road crew truck. I didn’t think much about being behind them until the rudely parked across BOTH handicap spots and right in-front of the concrete ramp, up onto the side walk. I was appalled. I stuck my head out my window and explained to them my daughter was in a wheelchair and how I really needed the spot with the lines to adequately get her wheelchair out. I held my breath, hoping I had not really upset some big looking dudes. The driver apologized and proceeded to move the truck. Now, if I was super rude or they had left, I’d have taken a picture of the “move” job. It was slightly over and up onto the sidewalks. I really didn’t understand, at all, what they thought they were doing. It wasn’t until I was getting Bai into her chair that I realized they were changing the signs right outside the building. Still, why couldn’t they part in a normal spot like normal cars? It was weird, but they were nice and apologetic. I told them “no harm no foul”. They had just graciously, without any kind of snarky comments, moved their truck (weirdly, but moved). I have to say, “Dear Road Crew, Thank You for your kindness in moving. I have never had people be kind to me in this situation, ever. Most are condescending, uncaring and definitely far from apologetic.”

Onward to the hospital. Our arrival time was to be 11 their time (10 ours) for the CT of her abdomen. This scan gives good pictures of her kidneys and her liver. Our next appointment wasn’t until 2:30. We were there forever! I had brought our lunch (since their cafeteria prices are crazy!). The girls and I sat at a round and tried to blow some time. We watched the buzz of the cafeteria and the hospital. There is so much life in these places on the surface and I know just how much death is hidden behind the walls. It is a sad place. Maybe it is just my brain that thinks those things. I feel the heartache in the air.

After we completed lunch, we had hours to wait. We chose to sit them out in the waiting room for Bai’s next appointments. The room that is filled with other people with TSC. Knowing all the children in the room have what my child has is mind boggling. Seeing that my child is the only one that doesn’t walk is heart wrenching.

We sat.

I was given a questioner to answer while waiting for our appointment time to roll around. This was great fun – no really. These questions were so beyond dumb and NOT APPLICABLE! That the girls and I got a good hoohaa out of them. I even took some pictures of the questions to send to Bob. He shouldn’t be left out of the silly!

There was one young man and his parents that kept catching my eye. He was older, 26 I would find out, and very curious about Bailynn. He didn’t seem to speak, but he did walk. His dad stopped and talked to me, ever so briefly, and asked a little about Bai. I asked little about John. I think Bai stands out to most people because of the obvious severity of her case. She is “involved.” I hate “involved.” John’s dad asked some simple questions. Mainly wondering her TSC diagnosis stuff. I tell him she has lots of angiomylipomas in her kidneys. She has the stupid (a bad word would fit more nicely here) tubers in her heart, lots in her brain, obviously on her skin (John did too), her liver, her right eye, and who knows where next. Oh, and I told him how Bai had most of the left side of her brain removed almost 15 years ago. He was kind, but taken back. John didn’t have very many angiomylipomas in his kidneys, only a few. John has a few in his brian, but not bad.

Ok people. Bai has made me crazy. I will not deny this. So in this very moment – this is what my brain thought! And I swear, I didn’t say it to this poor man. He probably would have found me to be the most bonkers person he’d ever met!

So, as John’s dad is wrapping up his “my kid has only a few angiomylipomas and tubers,” speech. My brain screeches. “Well, my kid is just better at TSC than your kid. Sorry, Bai doesn’t do things half way, like your son. She is the Queen of Tuberous Sclerosis and John needs to step up his game!” Ok, John really doesn’t need to. Good for John. So happy he doesn’t have these evil critters multiplying like bunnies in him. I’m happy his parents are not constantly wondering just what his kidney function is or how bad the scans will look this time. Yay, for John, but Bai Wins!!! She is simply better at TSC than John. Blue ribbon here please. She is simply better at TSC than most.

See – I’M CRAZY!! I love Bailynn to death! She is the best. So, if her over achievement is in being the best at her disorder, hey, owning it!

We got to meet with the team of nurses and doctors, after all the waiting, and they as always were super kind. It had been a long time since we had made this trip. Bai’s back, taking over our life, had kept us away from Cincinnati for a YEAR! We got all caught up on her and we got the clear to restart her TSC (Rapamune) Medication. Then we got the results from the scans. The angiomylipomas in Bai’s kidneys have grown. They did not grown at the alarming fast rate they had in the past, and the growth wasn’t huge, but they had grown. They also found that her liver contains more of them now – bunnies- because, TSC queen wants to make sure no organ is left untouched! Sheesh Bai. We took a special lab draw to look at her kidney function based on her body mass and we are now waiting to get referred to a Urologist there. It has been a number of years since we have seen one. The last time was the moment we realized we needed to find answers somewhere else. It was the doctor that made me find Cincinnati. I was so done with people giving up on Bai. Cincinnati is concerned about Bai’s chronic UTI’s, so we will see a urologist if they think it will help.

That is the trip last week. Minus the crazy bad weather home. Minus the lightning hitting within feet of rocket and my coffee intake at all time high levels to get us home.

Summed up:
kidneys still bad,
liver worse,
Bai is better at TSC than all other kids,
lightning is the worst when driving,
we are home, alive and on the medication again
we have to go back in 6 months
I’m crazy and realize I should keep most my brain thoughts to myself (so I share them on this public blog haha!)
Bai turns 16 in 9 days…..WHAT!?

For Her.
Bobbi

So you can giggle too – here are just a few of the questions

Q1

Non-verbal?! Why is this not an option! Ok, yes, she refuses to talk!

Q2

Bai is stubborn – does being picky and having to hold things a specific way count?! How can this be applicable to Bai!?

Q3

Again, NON-VERBAL! Why was this not a weeding question at the beginning of the survey!

Q4

I hate this question! Just so everyone knows, I selected of “Normal Intellectual Ability” because she is for Bai and for all I know she is a genius trapped in there! Stop putting everyone in a box!

Crazy Cin

This is what it looked like trying to get out of the city and to Chuy’s to get food! I am so not a city girl when it comes to these crazy people and their traffic!

Bragging Rights

First I will update on Bai. She is doing fabulous. She is tolerating life, her back is healing. Her spirits are up. She is eating well and sitting ok-ish (considering). We get her back and hand brace this week and we head to Cincinnati for check ups on her kidneys and liver. I’m going to end my Bai update there……

I don’t often get to do an update and just simply brag on my husband. Since Bai got home from surgery, over a month ago, we began drawing up the plans for an outdoor bar and grill area. We have wanted something and went through many many plans online. We finally found one that spoke to us; then we completely changed it – haha! I’ll link below the plan that got us off the ground and explain a bit how we altered it.

Bob is amazing at building things. It is a great gift having to live with me, no really! The poor guy comes home to my cockamamy ideas all the time. “Can you build this?” “Can you tweak that?” “Can you make magic?” (the girls and I painted their room today, we saved him that project!)  He may listen to me through slit eyes with one hand to his temple, but most of the time, he gets on board. I really need to post past project on here. His head may grow three sizes! He really is awesome at this stuff….you will see in the photos below. Here is the progression of our fabulous outdoor bar  and grill area that my husband has been building at night and on the weekends for weeks. He has had late nights, long days and little rest. His due diligence and craftsmanship shines through in the finished product. We are looking forward to enjoying this for many years to come! Check it out!

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Isn’t is awesome! We used a plan we found on Lowe’s Website. We did not use the 16″ stepping stones, we used 12″ and had to alter all dimensions by 4″.  We made ours an L shape and took out the posts and bars, because we wanted ours to function from both sides. That is plan that got us off and running though. I just had to share. Bob can make magic! See! 🙂

For Her (and the luckiest wife in the world),
Bobbi

Post Op

Wednesday the girls and I drove to Indy for Bailynn’s post op appointment at St. Vincent’s and for Lila to get her new mouth spacer put in at Riley. Bai was not happy with the car ride, either direction (I will share more about that below). She was however elated to get to leave the hospital with no procedures! She blew raspberries and squealed with delight as we left.
While there, we got fresh x-rays of her back and her hip. Her back looks exactly the same as it did with the rods in it! Huge win for us! That doesn’t mean that her muscles won’t cause issues and future curvature, but for now we are straight. Now we get her healed up enough and start working on muscle strength. Summer can’t get her soon enough, the pool is by far the most tolerable workout for her. Her hip is still displaced, but it has not budged one way or the other. Talk of more muscle and tendon release procedures was addressed, but really what is that going to do?! We have tried these things on multiple occasions. We have done botox, in an attempt to loosen her tightness. We have done serial casting in an attempt to get her hold her legs, feet, and hand in different positions. It has all fell flat, and made her incredibly mad in the process!
Still waiting on the brace for her back and her hand, I’m sure we will hear soon.
I addressed my frustration with the bad (in my opinion) stitch job of the dural tear procedure (images embedded below). The surgeon who preformed this just doesn’t stitch as pretty as her surgeon.  I realize she has had numerous surgeries on her back. I realize her back is riddled with scars, but is it necessary to not try and make it look decent?! Scars are the worst. It breaks my heart, but in this instance again, there is nothing that can be done.
We don’t have to go back to her orthopedic surgeon for 6 months (as long as Bailynn agrees to that!).
Next, we have an appointment to go and see the Tuberous Sclerosis specialists in Cincinnati at the end of April. We will get a CT scan of her kidneys (please pray like crazy! I am terrified of this scan). We will see the neurologist and nephrologist there and talk about finally getting to re-start the Rapamune for her TS and tumor growth. Just a few short weeks till this next adventure.
She is having better days. We still have days were she screams and throws up all  day. She still isn’t pleased with too much movement. She is tender. She is strong. We at least don’t have the worry of metal protruding from her back anymore.

Our trip to Indy:
Most of you that live around here know how windy it has been the last few days. Wednesday, on our journey home, I drove through some of the worst weather conditions I have ever drove through in my whole life. The wind was so strong it lifted furniture, huge bookcases, out of a vehicle a few up from us and threw it upon the highway. Cars scattered and dodged, the dumb truck kept driving! It was a real life game of frogger and somehow we all came out unscathed.  The wind kept us at a constant state of correction and alteration. Cars struggled to stay in their lanes and on the road. Some pulled over, most trudged on. The most disturbing scene was a Semi lifted by the wind and thrown off the highway into trees! The driver was ok, we saw him open his cab door to climb out, but still, what a sight! These driving conditions followed us all the way to Princeton. Then we heard a huge storm was heading our way, skies clear, wind dying, I thought there was no way. It did rain, but from our earlier driving conditions, the weather was finally safe to drive through. We made it home. I happily shuffled my children into our sanctuary and thanked God that we had got there safely, cause there were moments of great fear as we zoomed towards our destination. A very eventful adventure indeed. All for great medical care.

For Her,
Bobbi

If you would like to see the progression of Bai’s back since surgery. I am linking a pdf here. Click if you wish, as always, the images are not for everyone. Bai’s back post surgery 2016

 

The brace

Monday we went and got fitted for the back brace. I made sure Bai had plenty of pain meds in her before we took this journey, and man am I glad I did. The guy who measured her was gentle and great, but it isn’t a quick process. They could have casted her – haha  she never would have tolerated that! She did really well over all with the process. She wasn’t too keen on the ride to and fro, maybe out of fear as to what our destination was, maybe because she is still not feeling great.

I did get to give her a shower Monday morning! She looked so sparkly and clean!! Homeless GONE! She tolerate that well enough as well. She is defiantly not 100% by any means.

She then spent the evening throwing up, screaming, crying and all out mad at me. It was too much. I was too rough for her. She will have the new back brace soon, a few weeks and a new hand splint. Hopefully by then a trip out won’t be so upsetting.

We spent yesterday recovering and she napped a lot, even with company at the house.

Three weeks post rod removal, One week post dural tear repair.

We head back to Indy next week for Bai’s post op and for Lila’s dental work. I’m keeping a reserve of pain meds for that trip.  We shall see how it goes. Then we head to Cincinnati to see just what her kidneys have done over this last year. Deep breaths. It is all going to be ok…..

For Her.
Bobbi