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

Collagen

It has taken me a bit to sit down and write this update because I simply didn’t want to jinx it!

Collagen went in 2 weeks ago this Friday. My initial reaction was good, as was Bob’s and the plastic surgeon. The collagen injection went well, the overall appearance of the rods was diminished drastically and obvious cushioning was achieved. That did dissipate a lot over the last few days. The rods are quite predominate still, but overall the procedure did work. Saying that, we have to do this 3 more times, 1 a month for the next 3 months, to truly achieve the level of cushioning that Bailynn is going to require for these rods. Once we get there, the collagen should last for about 2 years.

We are still doing everything we can to keep the rods from getting too much pressure on them. We are still in a holding pattern waiting to see how this all plays out. We are still questioning, who wouldn’t be!

For now it is good news. I am trying to be happy, but my heart aches when I look at her back. My iPad is filled with photographs documenting her back over the last few weeks. Our lives are consumed by this….again.

The next collagen injection is June 20th. Please keep these in your prayers. Our insurance, as of right now, is denying these claims. I am hoping the surgeons are making a compelling plea as to why this is now required. Hopefully this doesn’t result in a fight with the insurance company. They love to be difficult.

We also travel back up to Indy next week for the neurosurgeon to look at the healing of the incision, which has healed beautifully, despite the horrific rod protrusion.

For Her.
BOBBI

The Reaction

Bailynn has had some kind of pressure point irritation or allergic reaction on her back. I really believe it is due to the combination of adhesive bandaging (which she always has issue with), neosporin, and pressure on the new rods and their placement.  She now has large irritation points on her back right where the new rods protrude the most.

We noticed this weekend and  immediately removed all bandaging. Her skin looked better within a few hours of removing them, but it is in such a bad location.
We have resolved to go bandage free now with a routine of antibacterial cream.

I sent pics to her pediatrician yesterday morning, because she is the closest and typically the most helpful in these situations. She said we really needed to share the images with the indy surgeons, which we were fine with. I then paged the plastic surgeon and spoke to him yesterday afternoon. He was upset the pics didn’t come to him first. We don’t panic over this stuff. We have literally seen it all. WE wanted to verify it was worth worrying about FIRST. I hate this drive. This is all very upsetting for Bob and I. We have lived a nightmare with this back, one that we can not truly express to anyone who hasn’t been in these 4 walls. Even the girls could see the tension in us as we discovered these things on her back. We have rolled her, cleaned her, re-bandaged her, kept her on cloud fluff, watched her begin to blow raspberries again, watched her appetite come back with a vengeance. She is ravenous. Then, we watched it all feel like it was falling apart. The weight of 9 years of back surgeries. Infections. Rods slipping. Vertebrate breaking. Metal peeping out of her skin. Rods removed. Rods replaced. Infection. Rods removed. Rods…..replaced. Did we do the right thing? The pictures don’t lie, but as I sat with her this weekend furious at myself, I began to hate me. I began to regret every decision made in the last 9 years. I began to have a breakdown of dismay and sorrow. I can’t explain. I felt so betrayed. I felt so helpless. I hate helpless. That is the last freaking thing I try to be!  Sleep didn’t come this weekend. Last night was my first night to feel like sleep was uninterrupted by dreams filled with regret. Bai sat with Bob and I as we watched a show last night and she kept begging her daddy to refill her cup, which he did. I think this moment, the 3 of us alone doing something normal and routine, helped my brain rest.

I would post pictures, but I feel that some things can be very upsetting to see for a large number of people, but know that she has what looks like friction burns about midway down her back, in the middle, framing her spine. My heart has exploded with guilt over it. These things were suppose to be in the past. This was suppose to be the answer, but we never get a moment to breath. We were going to take her back to Indy today for them to look at it, but the plastic surgeon wasn’t available until tomorrow, so we point north tomorrow.

Pray for her. This can’t be the new norm. The new location of the rods can not result in placement issues for her. She can’t suffer on account of them. She simply can’t.

For Her.
Bobbi

*I HATE SCOLIOSIS, just incase you didn’t know!

4/27/17

Before – After

Bailynn had an extremely good day yesterday, and we are starting today well.

She got all of her IV ports removed over the course of the day.
I got to see scans of her back and compare them to the previous scans.
She ate better, still not full eating, but better.
She sat up again for a long period of time.
img_7229I got to wash her hair with a shower cap thingy, that really isn’t the greatest, but got most of the dried up blood out of her hair. Her hair now looks greasy. Someone needs to invent something new for this.
Her dressing was changed around 3:30pm (indy time) yesterday, by plastics. He was impressed with how well her wound is healing – she does that – and I got to really see it. It is staples from neck to butt. It is a significant amount of staples from neck to butt. I will say that despite the overwhelming size and the little strips of metal littering her skin, it looks really good. I will be anxious to see how it looks iimg_7231n 6-8 weeks when we have to return to have the staples removed in the OR.
Then she got to put on fresh clothes – with pants! This is a huge step to feeling normal again.

This morning she got one of her back drains removed. The neurosurgeon, Team Unicorn Member, warned that she would not be happy, as they had to remove a stitch, pull out a huge tube, and then restitch her skin where it was, with nothing to numb the skin. Bai didn’t even flinch. Not a twitch. Not a moan. She just tried to shield her eyes from the bright lights the doctor had turned on. One more drain to go. It has been dry the last 2 times they have came to empty it. It will come out tomorrow morning I am sure.

I asked the Unicorn Neurosurgeon yesterday, while looking at the back films, if we could shoot for the weekend to go home and he said YES!!! YAY! He also said, though he knew we had told him she was quite the quick healer, but that he’d never expected her bounce back as quickly as she is. Bailynn is KING OF THE HOSPITAL (if you are Bones fan, you get it 🙂 ). Or in her case, QUEEN! She hadn’t had morphine since early Tuesday morning, until they changed the dressing yesterday. She is taking valium and lortab orally, and sometimeimg_7230s doesn’t need it till well past it time to be administered, I’ve been letting her sleep rather than waking her for doses.

She doesn’t like being moved a lot, but once rotated to a new position or sat up, she is fine.

Over all we have almost all our checklist checked to be able to go home. We’ve done this so many times, this list is ingrained in our brains. She needs to poo, she needs to not be on IV meds, she needs to be able to sit and tolerate it, she needs to eat, and she needs to not be connected to anything. All we have left is the back drain, then our checklist is complete! Our goal day is Saturday. I’d like to get her home and in her bed and have Bob have Sunday with us before he returns to work. She will do so much better at home, she always does. I swear she keeps her eyes pinched tightly closed here to pretend she isn’t here at all. Me too. These hospital sleeping accommodations are for the birds! Backless, boneless birds! UGH.
Pray for Saturday to be our day!

For Her.
Bobbi

UPDATE!!! DR THINKS SHE CAN GO HOME TOMORROW!!!! JAILBREAK!

The Appointment Opening

It never happens that we have a trip to Indy, to see one of Bai’s specialists, and another calls to see if we could perhaps come on that exact day too. No. It typically goes, I made Bai 2 appointments for the same day – woohoo!!! – and 2 days before said appointments, one doctor can’t see Bailynn any more. This is how it goes! So Monday, when Bai’s neurosurgeon’s office called and happened to have a magic appointment at 3 o’clock on the same day that we had ortho at 9 am – I was speechless. Luck had shimmered through a bit.

I happily excepted the appointment and proceed to tell everyone I could!  This is like hitting the lottery to me! For Real!

We loaded Rocket and head out at the crisp hour of 4am. We hit Indy and embarked on our first appointment. We knew this was going to be bad. We knew things were not going our way. We knew Bai’s back was bad. WE knew. WE KNEW. However, it is always a shock when, “your child needs surgery,” AGAIN!!! is said.
Bai’s curve – forward – has went from 61 degrees in September to 80 on Tuesday. Her body is caving in on its self. AGAIN!!!! SCREAM!! BRAIN POPS!!! SCREAM!! All in my head of course. I keep my cool or cry – crying typically cause I am so angry at all this!
I’m an angry crier – it’s the worst.

Ok, so Bai needs surgery.

When, April. How – horribly.

No really HORRIBLY!!! This time they have to go in through her side, move her diaphragm, remove a rib and make bone grafts out of it. Shim her spine with the bone grafts. Put the hardware on the inside (ok, this part I’m cool with. This makes sense for skinny minnie Bailynn!). The hardware will never poke through this way, however, this is an incredibly invasive surgery. It requires chest drainage after surgery, a vent, more nights in ICU, a longer period in germ land, oh, I mean the hospital. UGH!
Surgery………….AHHHHHHHHHHHHHHHHHHH!!!!!!!!

Next we take the girls to the children’s museum in Indy and try to let our brains soak up what was said, what has to happen, and that we are going to allow this. She needs this. This is, however awful we think, necessary.

We then head to our unicorn appointment. We met with the doctor, that 15 years ago, last Sept 20th, removed Bailynn’s brain and for years was her biggest advocate. We had slipped from seeing her in the last few years as we focused on Bai’s kidneys. We didn’t mean to lose touch, we looked for help and doctors elsewhere in this time. We searched for clinics that would look at Bailynn’s Tuberous Sclerosis. That would then treat her TS and would focus on her. We were not getting that from every clinic at Riley, but a huge majority of Bai’s specialists are still at Riley.

Her neurosurgeon just didn’t understand. Riley is a top notch facility, agreed, but. Our neurologist was not focusing on TS, just epilepsy. Our urologist and nephrologists seemed to be deaf to our pleads for assistance and help with her ongoing kidney needs. What other options did we have?!

Apparently, we now have some. Riley has a newish Neurologist, who get this! has a daughter with TS – SHUT THE DOOR! Ok, I’ll meet her. I’ll come back for that service if someone can see TS and not epilepsy. The other issue right now is nephrology. We will see.

Then we move on to the matter of Bai’s back. Her Neurosurgeon has done surgery on Bai’s back, to remove fatty lipomas and do de-tethering surgeries. It has been many many many years, but she has. We are telling her about Bai’s spine already curving, the nightmare we have went through with these super awful amazing rods. This is were the story turns. This is were our unicorn appointment seems divine in nature – completely. There is a new Neurosurgeon at Riley. He specializes in —wait for it—-THE SPINE!! and SCOLIOSIS!! WHAT!? Ok, so we meet him on February 15th at 1:30 and see if this hot shot has any ideas for our Rock Star! It was a very interesting day.

Bai’s neurosurgeon is on our team. She recommended a handful of other specialist to help with muscle issues and pain, that we will be trying to get in with soon. We will try to see this neurologist – maybe switch that back to Indy. It was such a productive appointment, that took 2 hours, Bob and I came out with a we-got-stuff-done kinda high. It was what we needed, but now the debate begins. If this other surgeon seems like a good idea, do we chance it, or do we stay safe with the guy who has known Bai for years. It is a emotional and intellectual debate. What is best for Bai?! Once we meet this guy, I’m sure we will have a better feel. For today, I try not to think about it. Bai turns 17 in May! We intend to take her and the girls to Disney this fall for much needed fun – Bai loves that place. They get to do this surgery, but Bai comes out the other end better. I said so!

That’s our week folks. Life with Bai – never dull.

I’ll be back when I know the plan or can relay more info!

Love

For Her (the Rock Star)
Bobbi

CUTIE ALERT! – Cute pics of the girls below at the Museum!

ReBranding

Bear with me as I go through rebranding my website to 5PinkPeonies.com. You will see the logo and look change over the next bit. I still have the domain My5Girls.com and if you put that into the web search box, you will still land here. I’m really doing it for business purposes as my business grows and grows and I simply do not want to manage 2 different websites. I have worked with some really amazing organization, business, individuals, and brides this year and last. I am humbled by the outpour of kindness and love for my merchandise and designs.

So, have you missed me? I have missed you. I have thought a lot about writing to all of you, so many things to tell, but not enough time to do it. This is going to feel like a short novel. We will start with last year, fall. We need to get caught up.

Our family got a much needed vacation and then returned to reality. Life. Bai has continually been in a great mood since the rods were removed last March. Though not every car ride has been fabulous lately. She tires of the car quickly, because of her back, we will return to that.

So we returned home from the beach, and dove back into our tree-tastrophe drama. It really wasn’t till December that all the repairs were done and our lives could take a deep breath from dealing with this ongoing situation. Yesterday I spent time trying to enter all of losses into our tax information. This is going to take forever, but I will do it! But of course this is us, so as one thing is resolved, another issue rears it’s head.

Our beautiful little beagle, Norbert, that we got in July, was having ongoing issues with peeing in the house. It was obvious he wasn’t trying to do it. He didn’t even squat. Urine literally falls out of him, just as he is walking! (Just so you know, we are now well known at the vet’s office.) Norbert was diagnoses with Acute Renal Disease. His renal function is actually pretty close to Baiynn’s. He also has multiple birth defects in his renal area. He has a tumor in his bladder and his bladder lacks the elasticity to expand. He is now on a few medications to help maintain his kidney function and urine acidity. Yup, you read that right, we are medicating our dog. He also wears the cutest little velcro diapers, because I simply don’t have the will power to continually clean up tinkle and babies live inside (don’t judge – I see you judging!). He has been going to dog training, at K9 University, and doing really really well. He is the sweetest little dude and honestly couldn’t have landed a better family for his situation. When faced with decisions on how to go forward with his disease, we never hesitated to do what needed to be done for him. He is our family and Bailynn loves him. So, he is in. He is one of us.
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Our little dachshund, Hamish, was cleared of his HeartWorm diagnosis that he got in August, in December, after expensive and dangerous treatments. We found that out during the tree incident. Good news for our family …….so then, 3 days before Christmas we rushed our, nearly 9 year old Jack Russell, Bridget, to the vet. She was having some issues and had to have an emergency hysterectomy. Do you see why the vet knows us? We are that family. 2016 was our year of crazy dog medical issues and trees falling. GOODBYE 2016!! Hope the door didn’t hit you in the, well you know.

So the calendar rolled, with us all sick and Christmas gone. 2017 was a chance to renew the crazy. A fresh start, why do we always think this? It is just another day with a different number, no different than the last. Our major concern, for the last few months, has been Bai’s back. The curvature is increasing at an insane pace and what are we to do?!?! No really, do you have any ideas!? We went to see her pediatrician last week to discuss some minor ongoing issues and to get some re-referrals to doctors, that I had let lapse too long. I showed her Bai’s back. At least Bob and I are not the only ones who look at it with pain and heartbreak. It is so bad. She wants us to see the orthopedic surgeon ASAP. I called and made an appointment to see him next week. We roll. We actually roll almost every 2 weeks for the next 2 months, to catch up on doctors we have not seen in years. The plan? Do I dare say I want the rods back. Do the words have the right to even come out of my mouth? Can I also say, “NEVER PUT THOSE RODS BACK IN MY BABY!” I love them. I hate them. I want them. RUN!!! This is my brain! How can she live like this?! We have done this 2 times and it has failed miserably! How can my heart ache for them to go back as bad as it does? Our hope is that he has some option, some idea to help. Hopes. Dreams. She needs something before this progresses more. She can’t live with her back caving in on her organs at this rate.

There is the update. Horrible right. Very summed up. You are welcome. Sorry. My brain hurts most days reeling over all this. I will say it is a relief to share it and a burden to pass it along. Sometimes I simply don’t update, cause I don’t know how to start and how to not bum the world out. Bai is amazing and despite her back and her relentless fight with tuberous sclerosis, yesterday was a good day, today is a good day and so will be tomorrow. That is how we move. It is good. It is well.

For Her.
Bobbi

Can you steam clean a bladder? NO?

Today I had one of those calls.  Bai often needs these type of calls, I think she finds pleasure in taking out a shiny wrench from her satchel and tossing it light heartedly into our family spokes. Things had been going too well Bailynn. Much too well.

We have had a great few weeks of summer. We have had fun by the pool, we took the girls to the movie theater to see Finding Dori. This was our first trip to the theater in well over a year. Bai’s past few months have simply been to hard too venture to such a quiet location and hope for the best. She did amazingly well. One of her favorite movies, by far, is Finding Nemo. She can watch it every day and still have the same enthusiasm over watching it. I think the colors and the music captivate her. Finding Dori was no different. She sat in awe. She squealed and blew happy raspberries. She shook her head with joy and intently watched her favorite characters scroll across the screen. Bliss. Bai Bliss.

We took the girls to Opry Mills yesterday with our friends and had a fabulous time. Bai was beyond content. She was quiet and observant. She was happy and participating. These are things we haven’t had for a year. This is behavior we thought was lost. There she was, again, happy. So the call today was shocking. Surprising. We all know (yes, I’m including you – hey you joined this journey, you’ve been here and read this stuff!) she has had chronic UTI’s for the last year. We all know this. No surprise – no shock value there. However, when the nurse tells you that an infectious disease specialist had to be contacted, the report reads like the plot to an outbreak movie, and the term “isolation” was used, shock comes screaming back into the picture. Seriously Bailynn! I wish she could read this! So Bailynn’s bladder has a form of Ecoli in it that is medication resistant and communicable. So medication doesn’t kill it and we all can get it – YAY! I was told to wear gloves when changing her. I have to laugh at this. Bai’s diaper is like a bomb waiting in silence to EXPLODE everywhere. I feel like urine is an invasion upon my life. I wash Bai’s bed sheet layers, blankets and shorts every day. I can’t remember a day when urine did somehow impact my routine. Gloves. Ha. My little Bio Hazard.

We are going to Cincinnati Wednesday to see a urologist, have an ultrasound done of Bai’s bladder, another culture and analysis. My mother was going to make this journey with the girls and I, I thought Bob could sit this one out. I mean really, how exciting can a bladder ultrasound be?! WRENCH. Bob got the call from me about Bailynn. My initial text to him read, “Basically, she (Bai) never doesn’t have a UTI.” This pretty much sums it up. Bai has basically had a UTI since last June. June. JUNE! That is 12 months!

I haven’t a clue what they are going to do. Bai’s local pediatrician is out of ideas. The nurse didn’t think my bladder steam cleaning idea would work, or  a slosh of peroxide in her bladder. Why are my cockamamy ideas so overlooked?! They think I’m nuts and I’m good with that. 😉  I know the problem, Bob knows the problem, Bai’s local doctor knows the problem, but there is no solution. UTI’s are caused by stool, Bai wears a “bacteria breeding ground” aka DIAPER. They are the worst, but what do we do. Tell me other options. Show me a solution!? I am willing to do just about anything. Well, except booty to the wind, that’s just silly and ultimately a new messy problem.

So here I sit after a few months of Bliss. Happy Bailynn. Content Bailynn. Our family is sailing through the summer with parties, fun with friends, and adventures. Bob and I are enjoying a Bailynn that doesn’t scream, a Bailynn that we can touch and lift and play with. We no longer have a fragile doll, though apparently we should be wearing gloves while we handle her right now (teehee). Our daughter is basically a bio hazard – should we get bags!? Barrels!? Signs?! No, too far?! I have to keep it light folks. This is just the worst. Why can’t Bailynn catch a break!????? If we don’t giggle and see the senseless need for this drama, we will cry, we will mourn. I choose to not. I choose to go on and laugh. I choose to throw myself into my family, my girls schooling and my little business. I choose to see that this is just another road bump, we will get over it and hopefully with little damage.

I am watching our family dynamic feel and seize relief. Does it have to be so short lived? We live for Happy Bailynn.

Pray we find answers and a fix (that isn’t the booty to the wind thing – really not pretty!). Pray the wrench is a simple bend in the spoke and not a wheel replacement ordeal. We (again, I’m including you!) all know Bai though. Never simple – never easy. No breaks.

For Her.
Bobbi

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