Twelve of one, dozen of the other

It's 18 April, which you might recall is the anniversary of the car accident that caused Mia's traumatic brain injury, and so that means it's time to check in on her annual progress. It's been 12 (!!!) years since the accident, and yes, I'm as amazed by the passage of time as you are. I can't believe it's been that long sometime, but here we are.

If anyone doesn't know what Mia's deal is, I wrote about it back when I started this blog, ten years ago. Every year she makes progress, although occasionally it's very slow and haphazard, and this year was no exception. She has continued with her many therapies, but there have been some setbacks in that area. She's still doing well with her hippotherapist/swim therapist, and her speech therapy is going fine, too. Unfortunately, things aren't as great with her other therapy. Beginning around December/January, she began being somewhat unresponsive to her occupational therapist. She was trying to pinch her a lot, and she wasn't listening to instructions, and things were deteriorating a little. All of her behavioral problems, we think, can be traced to her back, but I'll get into that below. After a few months of this, her OT thought it might be better to take a few months off. So she hasn't seen her OT in a while, and we're looking for June or July as a time when she can come back.

Meanwhile, Mia lost her physical therapist in October, which is also a pain. He had a lot of new cases for kids 0-3 years old, which he was required by the state to take on, and they were all very far away. Mia was his last client anywhere near here, and he didn't have the extra time to come to see her. Mia's insurance for PT ran out a few years ago, so she was a private client, and state-mandated work takes precedence. It was her original PT, so he knew her very well and did a lot of great work with her, so when he left, we were pretty bummed. We contacted the business that provides her speech and OT and they put us on a list for PTs, but we still haven't heard anything. It's a bit of a bummer.

However, at school, her PT has gotten better. At the beginning of the school year, she had some issues with getting up in a gait trainer and walking - she was being very poorly behaved, and she had some personal issues with her aide. In December, she got a new aide, and she has clicked nicely with her, so her PT at school decided to try getting her up in her gait trainer again. It's been going well - she's been able to stand (awkwardly, but still) and move her legs to walk, even though she still needs to be strapped in and her left leg doesn't move as well as her right leg. Obviously, she's going to take a break from that for a while she recovers from her back surgery, but we're hoping that when she returns to school full-time in the fall, she'll be able to stand up straighter and move her legs better. Ever since 2011, when her muscles inexplicably got tighter, we've been working toward getting her upright again, and this past year she's made a lot of progress in that regard, which is nice. We got her a new splint for her arm, which has worked pretty well.

Her old splint was a dynamic one, which means it pushes back against her and forces her to work very hard to bend her wrist, which we didn't want - her wrist needs to be straight so the muscles don't contract too far. It worked pretty well, but her physiatrist thought a resting splint, which simply holds her wrist in one place and doesn't force her to work, might be better. She definitely likes it more, because it's not as much work, so she wears it a lot longer. I don't know if she'll ever need surgery on her wrist to fix the problem, but for now, her doctor is happy with the splint.

Her school life has gotten a bit better since she switched aides, as I mentioned. Early in the year, she had a new aide, as her aide from the previous two years got a better job with better benefits, and the new aide had to get a handle on Mia and her behavior. Unfortunately, she never really did - she liked Mia a lot, but I think she took Mia's pinching too personally, and it really upset her that Mia wasn't nicer to her. We told her repeatedly that it wasn't personal, but she just couldn't handle the violent way Mia reacts to things. There may have been other factors that we weren't privy to, but I know that was a big part of it. She got a new aide and things improved greatly. The new aide even says that Mia never pinches or tries to bite her, which is surprising to us. Mia likes her aide so much that the other teachers and aides at her school have a really difficult time with her when her main aide is gone, either when she's absent for the day or even just for thirty minutes for lunch. Mia is horrible to anyone else who tries to work with her, and we're not sure why. I mean, she's not very nice to us, but we're doing horrible things to her like changing her diaper or moving her around.

At school, she seems to take great pleasure in lashing out at anyone who comes within her "grabbing zone" whether they're doing anything to her or not ... except her aide. She's nice to her speech therapist, I guess, but again, she's not making her work physically, so maybe that's it. Her current aide is assigned to her, not the school, so we're hoping that she can move on to seventh grade with Mia in August. Mia is finishing her second year of sixth grade - we held her back because she would have been 11 when seventh grade started, and we didn't think there was any reason to rush. Now, we think she's ready. We've visited the middle school she'll be attending, and it seems like a nice place, and the teacher is very experienced. So we'll see how that goes.

Her behavioral issues don't seem to be linked to puberty. She'll be 13 in August, but the last time we went to the endocrinologist, he said her blood tests showed that her hormone levels are still low, so while she's showing signs of puberty, she's not in it yet. We're still planning on trying to manage it - apparently you can cut the hormones from the pituitary gland and introduce them artificially, which gets her the hormones she needs but also keeps her (theoretically) from having crazy mood swings. With the way she behaves now, the last thing we want is her to have crazy mood swings. Her weight is doing well, although she's gaining very slowly. We increased her feeding from about 750 ml of formula to 1000, with an extra 800-900 ml of water per day, and she's handling that perfectly fine. She weighs about 66 pounds now, which is about 10 pounds heavier than last year, so that's something. I don't know how much she's supposed to weigh, but she looks very healthy, so there's that. We still can never get a good height on her, but now that her back is straight maybe that will be a bit easier. Her gastroenterologist is still not completely happy with her bowel movements, but I refuse to give her Miralax or another powder laxative, because it doesn't cause her to go regularly and it turns her poop into mush, which is absolutely no fun to clean up. So we've been giving her suppositories as needed, and that seems to work fine. I know her gastroenterologist would rather her poop every day, but I'm much happier with her going once a week as long as the stool is nicely formed. If the doctor wants her to go every day, she can come over and bathe Mia every day when her poop gets everywhere.

So Mia is doing pretty well. Of course, dominating everything these days is her back surgery, which she had 10 days ago on 8 April. Her Cobb angle a week before the surgery was 85 degrees, which is pretty serious. We don't know what it is now (the surgeon won't take X-rays until the 7th of May), but he was very pleased with the surgery and she looks a lot better. I'm going to write more about her surgery in a few days, but it went very well and she's recuperating nicely. I hope to send her back to school on 4 May, at least for a few hours, but we'll see. Her straighter back will help relieve her constipation, we're sure, and we hope it will help her when she's in her gait trainer, as well. She has to get used to the new way her body is positioned, but she seems to making good progress in that regard.

As always, she's usually a very happy kid, despite her pinching and attempts at biting when we move her around. She's getting better at using sentences (even if she doesn't like to, because why use more than one word when she can use one?), and she always happy to see everyone. We don't know how much the improvement in her back will change her behavior, but we're hoping it does make her feel better, because it can't be fun bending to one side all the time. Her sense of humor continues to develop - she loves farting and burping and will laugh like crazy whenever she or anyone else does it - and she seems to be interacting with kids better these days, which is nice. When she goes to middle school, we hope that this will continue, because she'll be in contact with an even larger pool of children. She hasn't figured out how to move her new wheelchair yet, because the wheels are a bit farther back than on her older one, but she's getting there, and I'm sure she'll get it eventually.

Even with her behavior, her quality of life seems fine, and we're hoping it continues to improve. She deserves it!

I've been doing these annual updates for a while, as you might expect, and if you want to take a trip down memory lane, here are the links: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, and 2014. As always, I'd like to thank everyone for reading - I was talking to someone the other day who was asking about Mia and said she didn't mean to pry, but we have no problem discussing her life, and we've gotten some wonderful feedback over the years. Mia, of course, makes everything worth it.

(New) bed time for Mia

Ever since we found out that Mia needed back surgery, we've been talking about getting her a new bed. Even longer than that, we've been discussing what would happen when she got so big neither of us could pick her up comfortably. Krys has already reached that point, and she's getting bigger slowly but surely every day. So we knew we'd have to get a hospital bed that we could lower so that transitioning her from a chair to the bed would be easier than picking her up.

Krys found a hospital bed on-line, and so recently we bought one. They don't take insurance plans; we have a prescription for it, so we're going to try to get something back from the insurance company (I'll wait until you pick yourself up from the floor after laughing so hard you fell out of your chair). It cost less than $900, but we spent an extra $200 for someone to come out and assemble it. I wasn't taking any chances with it! A few weeks ago, it arrived, the dude put it together, and we were off! We decided to switch the kids' rooms, because Mia's old bed is built like a tank and it was much easier to disassemble Norah's bed and move her into Mia's bedroom. She likes her new bed; we put the box-spring and the mattress on the frame, and she's now sleeping about four feet off the ground. We told her we could take the box-spring off, but she loves being high up. She's wacky. Mia, meanwhile, doesn't care about where she sleeps, and she's adjusted to the new bed perfectly well. Krys bought her a television for her room, as when she gets out of the hospital after back surgery she's going to be bed-ridden for at least a week (and we hope not longer than that). She doesn't seem terribly impressed with the way the bed raises her head, but I bet she'll like it when she's trying to watch television!

We haven't needed to lower it to get her in it yet; she still doesn't weight all that much (66 pounds the last time we got her weighed) and I can carry her relatively easily. Still, it's good to have. It's nice and long (the mattress is 80 inches long), so she should fit in it for several years, and Krys bought some padding for it, as the mattress isn't exactly the most comfortable thing in the world. It will be interesting to see how she deals with it when she's recovering from surgery. Maybe it will make her life a little bit easier!

Here are some pictures of the assembly and Mia lying in the new bed. She is, of course, as cute as can be.