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

We Cushion the Bulge

Collagen injections will be done this coming Friday, May 19th, at Riley Children’s Hospital. She will have to stay overnight for observations.

I called Cincinnati Children’s hospital yesterday to discuss Bailynn’s nutrition levels looking from a Tuberous Sclerosis perspective. I had a great conversation with a nurse there. I have been more than a little upset by what has been going on with Bailynn’s diet and the way it is being so heavily scrutinized. I explained the situation with the rods to the nurse. I also explained the recent nutritional levels and Bai’s intake. I stood firm on my no G-tube stance and I regurgitated her daily eating routine. I had already sent them the letter from the dietitian and they had seen her past blood levels. Here’s the deal. Bai has tumors in her body. Lots people. Lots and lots. They are coating her brain. They are speckled throughout her heart. They are ravaging her kidneys, dancing about her skin, They are in her liver and her eyes. They are EVERYWHERE! I want to scream and cry at this reality, but they are. They are everywhere. Her body is constantly making these things. Her body is constantly fighting itself over these things. Her blood work shows an inflamed state with high and low levels that once I googled them all individual, point to regeneration, healing, and recovery. I’m no scientist and I see these all pointing to one direction. Her body is consuming all the nutrients that are required to rebuild itself at an incredible rate. This makes her blood work look really out-of-whack. We didn’t know this, so we have since upped all the nutritional vitamins that were in the low range. We beefed up her calorie intake, her protein intake, her fat intake. Her levels are more in the low normal range, but still low. Her body is fighting. I can only image if we were not so on-top of her nutrition, what she would look like, how she would feel.

I asked the nurse if these kinds of blood levels are typical of TS children/individuals, especially those with the amount of TS organ activity as Bailynn. The answer – Yes! Yes! YES!! This is pretty well normal. She even was taken with how much action we have taken on this matter. Surprised how the fact that TS was being left out of the blood work equation. We agree……so please relay this info forward! We are having this all communicated to Riley. We need them to stop trying to put Bailynn into a “normal” box. As much as I don’t want people to look at Bai and see TS, this is an instance where they must! They must see TS! They have to take it into account.

I also had to discuss the medication we have put on hold for months now. It is has been since the last day of January that Bai got to take her Rapamune (Sirolimus). This is the medication that controls the tumor growth within her body. Our main concern now is being able to get back onto that medication. She needs it. She has to have it. Can what there doing to her back prevent that? That was second on my list of concerns for Cincinnati. There is a laundry list of do’s and do not’s with this med. There is a booklet of interferences and pages that reiterate it’s toll on the immune system.  All this needs to be known as well. All the “options” we were given for her back have to be options that let us go back on this medication.

Friday we do step one to cushion the bulge. Hopefully it works, hopefully it doesn’t dissipate too quickly. Hopefully. Hopefully it doesn’t interfere with her future medication needs. I can’t believe we travel to Riley again on Friday.

For Her.
Bobbi

It’s her birthday! The Options. 

We drove to Indy yesterday to let the surgeons get a good look at her back. The first thing they booth said was that it looked better in person than in the photographs, something I tried to relay, but it is hard when we live in a visual world. Photographs can often askew coloring and don’t give a great perspective of size. 

The rods are protruding. This is the issues. They are protruding in a region of her back that takes a lot of pressure while sitting or laying. She is skinny. This is a fact. This is fact that EVERYONE knew going into this procedure. This was why we chose this team of doctors. She is skinny, she needs rods, can you do this? The answer was yes, and then some. 

The first thing they jump to is nutrition. I can not tell you how much this enrages me. I can not express to you the deep hurt it gives me that for years and years and years and years and years, we are accused of not feeding her to the level she needs to be fed. Bull. JUST BULL! This child, throughout her 17 years, has never had an issue with eating. She may not walk, she may not talk, she may not do a lot of flipping things, but she EATS! She EATS!!!!!! She gobbled down formula, jar after jar of baby food, she inhaled pureed foods, and boost, she has at more calories in a day than what I believe most body builders eat, and still looks like a run way model minus 100 pounds. She is SKINNY, but this kids loves food. She loves to eat so fast you wonder if she is breathing in-between gulps. She gets angry with you if you try to hold her cup. She claws your arm if the food is gone and she wants more. She screams from her room if she is laying there hungry. She tells us, in her way, FEED ME!! I want to stamp my feet. Punch the sky. Yell at the top of my lungs! I want these doctors to hear us when we tell them how much she eats. We have provided caloric intake, we have increased caloric intake, to the absurd levels of 4000 calories a day, when her vitamin levels still came back low, despite her intake of 200% (and in some cases more) of the low vitamins a day. This is just insane. 

I have joked about creating her a youtube channel and calling it “Watch Bailynn Eat”. Every day I would video her eating every cup full. Every morsel of food logged. Every gulp accounted for. This way, every time a doctor accused us of not providing her with the nutrition she needed I could refer them to “Watch Bailynn Eat”. 

Then the bring up a feeding tube! Are you really going there?! Are you kidding me!? Bob and I’s first question is, “Does that somehow make it stick to her body differently?” Does a feeding tube have magic powers we are not aware of when it comes to intake? NOPE! BIG FAT – NOPE!!! Sorry for ranting people, but this is just the crazy stuff we have to deal with. I will note, I understand that there are families out there that profess to feed their children and don’t. There are people that lie to these doctors and have burnt them in parent doctor relationships. I get that, but for the love of GOD, our family cares for Bai like no other. She has, for every day of her 17 years, been loved, pampered, fed, cleaned, and cared for above and beyond. Please stop belittling my abilities. Please stop trying to classify us with no real knowledge of us as people or as parents. Please stop. I plead with every medical staff professional in the world, not all of us are failing. Not all of us are struggling. 

Now let me also state, if I could get her to gain weight, like 10lbs, that would not mean that 10lbs of fat would magically appear on her back. Weight/fat whatever doesn’t go where you tell it to. Heck, if we could tell our fat where to be placed, we’d have a lot happier people in the world. It’s just silly all the way around! 

Ok, deep breath, again, they knew she was SKINNY, before they placed these rods. This is not a new development. This didn’t happen last week. Now, we are dealing with it like it is a new issue. Now we are looking for solutions to problems we believed was under control. 

Here is option 1. 

Option 1 is inject collagen around the rod protrusions, on each side of her back, to try to fill in and cushion the skin. Ok. Collagen is much like a botox injection when it comes to longevity (it is obviously nothing like botox itself). Collagen is a temporary fix and would have to be done multiple times as it dissipates. This is however the least invasive option we discussed yesterday and therefor our first pick. We will do this for the first time in a week or 2 to see if it works. This will have to be done in the OR (operating room) and she will have to stay overnight in the hospital. This must work. 

AHH! I forgot! Bai has gained 5lbs since surgery!!! Ok, so that is another – she eats! moment. The straightness of her spine provides her with more comfort in eating. Take that doubter doctors! Ok, back to the options! 

Option 2.

Transplant fat. No lie, we have teased about this for years and apparently it can actually be done! SHUT THE DOOR!!! The issue with this option, is they’d have to take fat from somewhere else and put it there. Uh, she doesn’t have any fat anywhere else. ISSUE. So, this option looks fabulous, but we need fat. This also requires cutting her, exposing the rods, increasing the risk of infection, and recovery time. This option if viable if option 1 doesn’t work, but I would still like to avoid this option. 

Option 3.

An implant, much like a breast implant, but we are not putting bumbles on her back. It would be more rectangular in shape. It would have an open port area for them to deflate and inflate it at will. It would involved the same risk factors as option 2 plus the now added issues that could arise with a port. I don’t like this option in the least. This would be a do or die for me to choose. The open port alone is a no-no for me. Her skin easily breaks down. She is high risk for infection. She takes medications (when she can), that lower her immunity and healing. This is just a nope. 

So we need to put a little weight on her, yes, we agree. They need to understand that that most likely will not solve this issue. Looking into nutritional factors, with people that grow tumors in their bodies, she is always going to struggle with vitamin levels. Her body is constantly fighting inflammation, tumor growth, and her body is constantly trying to heal itself from what it does to its self. These rods however, sticking out and causing issue already, are not the fault of her diet. The placement and protrusion, would be the same on any of our girl’s backs. The difference is the way Bai holds her body, lives her life and fights. She is a challenge. She is Bailynn Drew. Did they not read the memo!? 

It is her birthday!! HAPPY 17th to the most challengingly wonderful little girl I know. How far we have gone. How far we have come. How far we have yet to go. 

For Her (on her Birthday!)

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!

Rainy Day Bliss

Bai has had a great day. She has chilled in her room playing with toys, watching movies, and jamming to music. She has ate every drip of food I have given her. She has giggled at me!!!!!  I love days like this! Surgery recovery is always the worst, but today made the process a little better!

For Her
Bobbi

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Bai is rocking her beads to the beat of her favorite CD

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She loves beads!

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Bai and Norbert

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This is her favorite CD

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If she looks hard enough, she can hear it – haha.

1 Week Post Surgery

IT HAS BEEN A WEEK SINCE SURGERY! A date we dreaded and Praise God, it has come and gone.

Friday morning Bailynn got her last drain removed from her back and she got to come home!! We were thrilled at this! Not only did her eating improve once we got home, but her mood did as well. There is absolutely something to be said about being home.

Our family spent the weekend trying to recoup sleep and find our new groove for the next few weeks. The storms that rolled through did not help!

Yesterday we had to change her bandage, clean the incision and re-bandage it. She also got to get cleaned up! Her hair doesn’t look hospital disgusting any more! This all went surprisingly well and she tolerated me removing a ridiculous amount of sticky bandaging from her back. Her dirty looks were in full force, but no screaming or crying!

Bailynn’s pain management is also something we are always concerned about. She once again shows us just how amazing she is by going longer and longer stretches between doses. She went all night last night, sound asleep, with no pain meds. I don’t know how, I’d be in intense suffering mode.

Today I’m going to try to get caught up on house work and work. Bob got to return to work and get caught up on all the chaos that happened last week with a piece of equipment being damaged. It is nice to fall back into routine.

We are still waiting on return dates to Riley for post op. We have to go back on May 16 for ophthalmology. Her plastic surgeon has to remove her staples in the OR in 5-7 weeks now. Our running up and down the highway has not stopped …. nor does it feel like it will in the near future.

For Her
Bobbi

THANK THE LORD

©BobbiHammonds