The cyborg-ization of Mia continues apace!
Back in December, Mia saw her orthotic surgeon and he didn't like the cut of her jib. By which I mean, he thought her back was bending in a way that was not completely copacetic. I wrote about this two posts down (man, I really need to update the blog more often, don't I?), but it's useful to remember. He was concerned about her scoliosis, so we made an appointment with the orthotic guy who crafted her AFOs (for her legs) and her wrist splint (for her wrist). In January, we headed downtown, where he put a body sock on her, marked it up with all sorts of lines to indicate where things would be, and sent me away. A few weeks later, Mia's brace was ready!
The brace won't fix her scoliosis, according to her doctor. It can arrest the bendiness, but it's not going to straighten her spine. We just hope that it won't get worse at this point, so for now, we'll see what happens with the brace. It's very hard to put on - as Krys has pointed out, it's much like a corset, but I would bet the materials used for it are much tougher, so wrapping it around her, even before I start tightening it, is a chore. Once I get it on her, I need to make sure it's down far enough. The orthotic guy cut a hole in it so that her G-tube button can be accessed, and the hole needs to be in the right place so the button is exposed. This is harder than it sounds. Mia, as you might recall, does not like straightening her legs even a little bit, and the brace comes down right to where her legs bend. To get it a bit lower, I need to lay Mia on her side and tug down on the brace while trying to keep her body immobile. Yeah, it's hard. It tickles Mia, though, so at least she doesn't whine about it. Even though I get it as far down as I can, the button is still very close to the bottom edge of the hole in the brace, so I have to call the orthotic guy and ask if he could make the hole bigger, because if the brace rides up at all (and given Mia's predilection for rocking back and forth in her chair, it's a strong likelihood it will), the edge of the hole will push against her button. It's a thin layer of rubber, so it will either pull the button completely out (which is a possibility but unlikely) or it will get between the button and her skin and rub, causing a lot of irritation. No fun at all!
Mia has been wearing the brace for a few weeks, and she seems perfectly fine with it. It forces her to sit up straight, which makes the people at school happy, because when they're hooking up her G-tube to her button, she can't bend over and make it difficult for them. Obviously, she can't put her head down on her tray, although recently that hasn't been a problem - she's much more energetic than she has been in the past. Today was the first day I put her AFOs back on - the orthotic guy told me to give her about a week to get used to the brace - so she's looking more like a cyborg today than ever. But if it keeps her back from getting more twisted, that's the way it has to be!
She also got weighed at the doctor's office yesterday, and she's up to 53 pounds, which is a 3-pound gain since October. So that's nice.
Anyway, here are pictures of her fancy new brace:
Those last two pictures show the hole through which her G-tube runs pretty well. With the buckle there, it might be dicey to cut the hole bigger, but I'm sure it can be done!
Next in the cyborg-ization of Mia? I'm trying to get a fully-functioning exoskeleton that would allow her to walk, but I'm not sure if that's feasible.
The brace won't fix her scoliosis, according to her doctor. It can arrest the bendiness, but it's not going to straighten her spine. We just hope that it won't get worse at this point, so for now, we'll see what happens with the brace. It's very hard to put on - as Krys has pointed out, it's much like a corset, but I would bet the materials used for it are much tougher, so wrapping it around her, even before I start tightening it, is a chore. Once I get it on her, I need to make sure it's down far enough. The orthotic guy cut a hole in it so that her G-tube button can be accessed, and the hole needs to be in the right place so the button is exposed. This is harder than it sounds. Mia, as you might recall, does not like straightening her legs even a little bit, and the brace comes down right to where her legs bend. To get it a bit lower, I need to lay Mia on her side and tug down on the brace while trying to keep her body immobile. Yeah, it's hard. It tickles Mia, though, so at least she doesn't whine about it. Even though I get it as far down as I can, the button is still very close to the bottom edge of the hole in the brace, so I have to call the orthotic guy and ask if he could make the hole bigger, because if the brace rides up at all (and given Mia's predilection for rocking back and forth in her chair, it's a strong likelihood it will), the edge of the hole will push against her button. It's a thin layer of rubber, so it will either pull the button completely out (which is a possibility but unlikely) or it will get between the button and her skin and rub, causing a lot of irritation. No fun at all!
Mia has been wearing the brace for a few weeks, and she seems perfectly fine with it. It forces her to sit up straight, which makes the people at school happy, because when they're hooking up her G-tube to her button, she can't bend over and make it difficult for them. Obviously, she can't put her head down on her tray, although recently that hasn't been a problem - she's much more energetic than she has been in the past. Today was the first day I put her AFOs back on - the orthotic guy told me to give her about a week to get used to the brace - so she's looking more like a cyborg today than ever. But if it keeps her back from getting more twisted, that's the way it has to be!
She also got weighed at the doctor's office yesterday, and she's up to 53 pounds, which is a 3-pound gain since October. So that's nice.
Anyway, here are pictures of her fancy new brace:
Those last two pictures show the hole through which her G-tube runs pretty well. With the buckle there, it might be dicey to cut the hole bigger, but I'm sure it can be done!
Next in the cyborg-ization of Mia? I'm trying to get a fully-functioning exoskeleton that would allow her to walk, but I'm not sure if that's feasible.
posted by Greg at
9:15 AM
3 Comments:
My daughter has been suffering some weird, as yet undiagnosed pain on her arms and trunk and legs.
By
Roger Owen Green, at 28/2/14 4:48 AM
Roger: That stinks. It's annoying when you can't get a diagnosis. With Mia, it's easier, but she still stumps medical professionals occasionally!
By
Greg, at 28/2/14 9:53 AM
Yeah, it does. won't get anything useful until Tuesday at the EARLIEST. Meanwhile, shes been rehearsing a musical and playing thru the pain, as it were.
By
Roger Owen Green, at 1/3/14 5:07 PM
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