The Daughter Chronicles

Friday, October 31, 2014

Whenever Mia gets busy, it's never good news

Poor Mia. I decided to set up a bunch of doctor appointments in October for her, and she also had her parent-teacher conference. So she's been running around getting looked at, poked and prodded, having no fun whatsoever. Here's a run-down.

First, she went to see her neurologist. He didn't say much, but he did like that we have almost weaned her completely off of her bad seizure medication. The stuff she had been taking, valproic acid, was fine for her seizures but made her bones more brittle, so combining it with someone who doesn't walk and bear weight and all those other things that build up bone strength wasn't a good idea. Over the past six months or so, we've gotten her off the valproic acid and onto Lamictal, which seems to working perfectly fine. It's been months since she had a seizure, at least the seizures we used to see (at school, they claim she's had one or two, but the way they describe them makes them sound like they might be times when Mia is just spacing out a bit). So that was nice. I totally forgot to ask the neurologist about her latest tic - she twists her head to the side rather violently, and we're not sure if it's a new kind of seizure or not. It seems somewhat voluntary, or at least something she can control if she puts her mind to it, so I'm not that worried, but I'm still pissed that I forgot to mention it.

Then she had to get a molar pulled. Whenever Mia's teeth are loose, they rarely come out easily, because unlike other kids, Mia doesn't really bother them too much, so they take their sweet old time coming out. For the past few, we've actually taken her to the dentist to get them pulled because they were taking so long. She went to the dentist in September and he told me that it wasn't that big of a deal, but several weeks (not quite a month, but close) later, the teeth still weren't out. I took her in and he pulled one, but couldn't find the other one. Presumably it fell out, but we're not sure if she swallowed it. If she did, it didn't affect her at all. Anyway, those were the last two baby teeth she had, so now she doesn't have to worry about it anymore! Also, all four of her molars had fillings in them, but now her mouth is clean ... for a while. It's still hard to keep them clean, because flossing is a total pain in the butt.

Later in the month, we headed off to the orthopedic surgeon to discuss her back. As you might recall, Mia's scoliosis continues to get worse, and her doctor told us we really don't have any choice but surgery. Our only choice, really, is whether we want to do it right away or wait a few years, and he said there was absolutely no good reason to wait, because it would just get worse. Unfortunately, "right away" means at least April, as he's booked through March, but that works a little, because the recovery period is so long that we thought she'd have to miss a good chunk of school. If we get it done in May, she won't miss too much school or possibly none at all, if he thinks it's okay to wait until Memorial Day, which is when she gets out of school. We shall see. We're still nervous, of course, because it's surgery, but that's the way it is, I guess.

Finally, she went to see her physiatrist, who also didn't have too much to say. She's more worried about her wrist, as it's still bent too much and her splint isn't helping as much as we'd like. I put the splint on her almost every day (I know it should be every day, but sometimes I forget), but I only do it when she gets home, so she only wears it for a few hours. I used to have her wear it to school, but they would take it off sometimes and not put it back on, which defeats the purpose. I'm going to start again and hope it's better this time, because she really ought to wear it for six hours or so a day.

Her last appointment of the month was today, with a pulmonologist. The orthopedic surgeon sent her there as part of the preparation for her back surgery, as they need to figure out how much help she'll need breathing in the post-operative phase. Mia has always been healthy (with the exception, obviously, of brain-injury-related stuff), and her breathing is perfectly fine, so the doctor didn't think she's have any issues after the surgery. So she's cleared for surgery, and I'll have to contact the office to set up it up.

She also had her parent-teacher conference, which was ... okay, I guess. I noted the last time I posted (yes, two months ago - I apologize!) that Mia had been acting poorly at school, and it hasn't gotten much better. Her aide decided she was too much to handle, so they're now looking for a new aide. In the meantime, while they still have aides for her, she doesn't have an aide solely devoted to her, which means she hasn't really developed a relationship with any of the aides and is therefore perfectly willing to be mean to them. They finally decided to put on a mitt we bought - it's like a boxing glove, except far more comfortable, and it's designed to keep kids from pinching anyone. They didn't want to put it on her because state law doesn't want to "restrict" children, and they have to jump through some legal hoops to allow it. Yes, we bought it and told them it was okay to use, but that wasn't enough. They told me they had to amend her IEP, which is fine, but they didn't do it until after the parent-teacher conference. Now, I thought they would need more of the IEP team to sign off on it, but it was just her teacher and the principal (and me, of course), and in the end, I didn't even have to sign the amendment. So they waited two months or so when the teacher could have written up an amendment in five minutes. I love bureaucracies!

I'm not terribly sympathetic to the aides and teachers at her school anymore, though. I know it hurts when Mia grabs and pinches, but I've told them how to deal with her and gave them the tools to deal with her, but they're not listening. I suspect that they're ignoring her a bit too much - probably not for long, but enough that Mia gets pissed off. That's when she's meanest - she still gets upset if Mommy and Daddy aren't paying attention to her. If they don't have a one-on-one aide, the other aides have to deal with other kids as well, and Mia doesn't understand that, and she lashes out. She needs someone next to her all the time, because then that person can be right on her if she tries to be mean to anyone. I get that they're looking for a new aide, but that's not my problem. I'm a bit disappointed with her school this year, because they've been very good with Mia for several years now, and in this final year, they seem a bit more disorganized. The principal told me today that they offered the job to someone, and they're processing her paperwork (working at a school means there's a TON of paperwork), so maybe Mia will have a new aide soon. If she does, I'll have to talk to her before she begins dealing with Mia and let her know what's what. Mia isn't really that difficult to deal with, unless you're not paying attention to her. I know, shocking.

So that's her busy month. The gears grind slowly, but it's always nice to get some progress with her health and with her schooling. It would be nice if we didn't have to go through all of this, but that's the way it is. If she weren't a special needs kid, I'm sure we'd have to deal with other, more "normal" stuff!