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!
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.
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!)
2 thoughts on “It’s her birthday! The Options. ”
I don’t understand why the Doc’s would imply you’re not feeding her.. . there could be any number of reasons why she doesn’t gain weight. For one thing skinny kids run in the family. That along with the disease process could be screwing with her ability to use the nutrients I would think. maybe they are just trying to figure it out them self and hope by increasing the calories she will get enough to actually gain. 4000 calories is a lot of calories for someone who isn’t active…..
Happy 17th birthday, Bailynn!!
Our son is very thin also. His legs are especially thin, since he isn’t able to use them. His calorie intake is also high – and he eats a lot of food. I believe it has something to do with an inability to metabolize food. Medicaid stopped providing Boost (“he eats food, so he doesn’t need it.”) We give him a lot of whole milk and ice cream, and are thankful that he eats well most of the time. Except when he needs to have a bowel movement…….that’s another issue.
I know this has all been a trial for you and your family. Hang in there, and keep loving on your sweet girl!!