The Daughter Chronicles

Friday, April 18, 2014

Eleven years goes too fast

Eleven years ago, Easter fell on the 20th of April, just like it does this year (in the West, at least; the Orthodox Church uses a different computation). How do I know that? Because eleven years ago, Good Friday fell on the 18th of April, just like it does this year. And I know that because eleven years ago on Good Friday, Mia and I were in the car accident that changed her life (and, to a lesser degree, mine and Krys's) forever.

Yes, another year has passed, and as I do every year, I take some stock in how Mia's life has progressed during the year.
As I always do, I will link to the story about her accident and some pictures of her in the hospital, in case you haven't read about it yet. Sorry, it's a bit depressing.

This year has been ... okay, I guess. Better than some, and she's making progress in a lot of areas, but in some ways, it's been really depressing. The worst aspect has been her continual problems with her muscles, which show no signs of getting any looser. We're well into the third year of her not being able to straighten her legs all the way - the last time she was able to stand and "walk" (with assistance, of course) was in July/August 2011, and then her legs tightened up and we've been dealing with that ever since. Her physical therapist doesn't do much these days except stretch her legs, and even then he can't get them to straighten out. For a while he was coming only every other week, because he wasn't sure what else he could do, but that didn't work too well, as Mia was just getting tighter every time he showed up. It's very hard for me to stretch her - he does it for an hour and she still gets very upset, and when she's home alone with me, I'm trying to get food into her (see below). It's also very, very hard to stretch her, and is pretty much a two-person job - I help out when her PT is here. Mia doesn't want to lie straight, so when we put her on her back, her legs move to the left to relieve the pressure on her hips. If we straighten her legs, her torso moves to the right to put her in the same position. So when her PT is stretching her, I have to sit next to her and keep her torso straight while he keeps her legs straight. She's not happy about that at all, I'll tell you that much. She struggles mightily against it, and over the past few years, it's become harder and harder for her to relax.
She used to be able to compose herself and her PT could stretch her a bit more, but these days, her muscles are constantly firing, even when she's lying still. He holds her legs down, but unlike in years past, he can't push too hard on them, because her muscles are pushing against him so hard. That's part of why her legs won't straighten out. It's very frustrating.

I haven't gone to see her physical therapy at school recently, mainly because I've been doing other things, but I know they're trying to get her in a stander and get her elevated a little. I don't know how they're doing it, as she doesn't want to straighten her legs, but that's why I want to go to school and check things out. We've been leaving off her orthotic devices for her legs recently, because she's been wearing her back brace constantly. I put her AFOs (her ankle-foot orthotics) on for one day, and she seemed very uncomfortable. The problem, as I noted above, is that she doesn't - and can't - stay straight. If her torso is fixed in her back brace, she is very uncomfortable if her legs are fixed as well. She's straining against the orthotic devices constantly, and that can lead to a lot of fatigue (naturally) and even screw up her bones or muscles, because she won't - and can't - stop doing it. We originally got the AFOs for two reasons - she was pointing her feet constantly, which screws up the tendons in your feet, and the AFOs keep her feet bent at a 90-degree angle to her legs; and she was scissoring her legs when she walked, and the AFOs kept that from happening. Her feet are no longer pointing, and she doesn't walk at all, so we're giving her a break from the AFOs while we work on her back, which is more important at this time. It's all about choices!

So her PT is going poorly. I wrote about her leg breaking in December, which was just another setback. She's still getting physical therapy from a variety of people, but I don't know how well it's working. I think it's maintaining her level of movement, which at this point is all we can hope for. As I wrote above, when she eased back on PT for a little, she got measurably worse, so whatever we're doing for her right now is just keeping her from getting worse, but it's not really making her any better. Her PT doesn't know if anything will ever help her, but we'll keep trying.
I just found out recently that her orthopedic surgeon has left Phoenix Children's Hospital, so we'll have to find a new one. That's fine - new blood can be interesting - and I'll be interested to see if a different doctor has any new advice. Her orthopedic surgeon is a good doctor, and he always gave us good advice, so I'm wondering if a new doctor will have a new perspective. We shall see.

Another big problem that has come up recently is her age. She's 11, and we're pretty confident she's heading into puberty, and that's not good for anyone! Recently she's been very feisty, acting out more at school and even trying to pinch me more than she used to, which is very unusual. This past week she drew blood from one of the kids in her class, which is not a good thing. We've tried for years to get her to stop pinching and scratching, with varying degrees of success. I think the kids in her class tend to forget that she doesn't tell people to get away from her if she doesn't want you around, she just lashes out with her right claw. I told her aide this week that even though we can tell Mia to be nice as often as we can, they also need to make sure the kids aren't crowding her too much, because she'll start pinching. Her behavior is unusual only in its intensity, and we think it has to be puberty, because nothing much has changed in her environment. I've called a doctor at Phoenix Children's Hospital who runs an adolescent transition clinic for special needs kids, as we're trying to arrest puberty as much as we can. Norah asked why kids go through puberty (she still doesn't want to know the details), and I told her it's to they can have children. As that's not really an option for Mia, why should she have to go through all the crap that goes along with it? We know we can stop/slow some of the more annoying aspects of puberty, so we're hoping that's the way to go. I, for one, do not want to change the diapers of a menstruating girl. I don't think anyone can blame me.

All is not gloomy, though. Her weight has increased - the last time she was officially weighed, she was at 57 pounds, which is the highest she's ever been - and that means her energy as increased. She's doing well with the formula she's on, and we're trying to get more water in her so she doesn't get dehydrated. She's more active at school and she doesn't have to go to bed as early as she used to because she's not exhausted, even with the back brace on all day. At school, they're very happy with her progress - she's working harder and seems to be doing better with the work. She still has trouble formulating full sentences, but she's getting better at it, especially when everyone reminds her that she has to. They were very happy with her progress at her annual IEP meeting. We also decided to keep her in 6th grade for another year. She will be 11 when the new school year starts, and won't turn 12 until about three weeks into the school year, so she'll be very young for 7th grade. She will still be taught according to her IEP, which has nothing to do with what the rest of the kids are learning, so the only reason to send her to the next grade would be because socially, she's ready to go. We thought she was a bit young to enter 7th grade, where most kids are already 12 and some even turn 13 during the year, so we asked if she could stay at her school for one more year. So that will be nice - she can grow up a little before moving on. At least that's the theory!

It's been a somewhat eventful year in other areas not specifically concerned with Mia's health. We got a new van, as she was dangerously close to outgrowing the old one. It has a nice wheelchair ramp and a large area for the chair in the back, and it's pretty neat. She got a new chair for the house, which is larger than the one she had for years, and she digs it quite a lot. She got a new speech therapist - the third since her long-time therapist moved - and she likes the new one a lot. As always, we're keeping our fingers crossed that this one hangs around for a while - for some reason, speech therapists tend to switch jobs a lot, while her PT (who's been with her since the very beginning) and her OT (who's been her therapist since 2005) keep keeping on. She's doing quite well with OT and speech, which offsets the struggles she's having with PT a bit. I mentioned last year that she got a new lawyer (but kept the same paralegal, which helped), and that transition went smoothly. The court has some new guidelines to follow about keeping track of her expenses, which is annoying but nothing too terrible. One thing that bugged me recently is finding out that she's slowly running out of money. We want the money she received in her settlement to last for her entire life, but that's not going to happen unless we change the way we use it. It gains about 4-5% per annum, which isn't a bad rate of return for a conservative portfolio, but we take out about 7-8% per annum, which makes it unsustainable, obviously.
She's safe for a while, and we're probably not going to take as much out when she reaches adulthood (maybe we will, but we don't anticipate doing so), so we're hoping we can lower the percentage we take out, but who knows. We really can't cut any of the expenses we accrue, because they're all things that are essential for a kid like Mia, and they're too expensive for us on our own - her diaper bill, for instance, runs quite high, and most parents of 11-year-olds don't have to worry about that expense. This past year was a bit extreme, as we took a chunk of money out for the new van, but it's still frustrating that her principle is slowly diminishing. Nothing to worry about right now, but something we're already addressing so it doesn't become a big problem.

This has been a pretty decent year, all things considered. Yes, she's getting bigger and harder to move, and her physical state isn't as good as it has been in the past, but she's doing better in school, she's interacting more with people around her (although, as I noted above, it's not always positively), and she's gaining weight and therefore she has more energy (or course, we don't want her to gain too much weight because she doesn't do any exercise and can't burn it off), which is very neat. Her new anti-seizure medication - Lamictal - seems to be working pretty well, and we're slowly weaning her off the stuff that makes her bones brittle. Fewer seizures means she's sleeping better, which is always a good thing.

As always, it's tough raising a kid like Mia, but it's also very rewarding when things go well. We don't have a lot of confidence that her muscular problems will ever get resolved (short of replacing her muscles and tendons with bionic parts and turning her into Jaime Sommers), but we're very happy that she's working harder in school and she seems to be enjoying herself more. You take the good with the bad, I guess.

In case you've missed some of the other annual updates, here they are: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, and 2013. Man, I can't believe how much she's grown. Who could have predicted that?

Thanks for reading, as always, and I know I've been slacking a lot recently in writing. I will try to update more often!