This blackjack is not great!
I've been writing these posts for a very long time - the first time I wrote an annual "accounting" was in 2005 - and I know, over the past few years, they have become more ... perfunctory, I suppose, although I do like writing them and I try to find some new things to say. But as Mia has grown, things with her just don't change too much, and so these posts just don't have the new information that people might want. I will keep writing these posts, of course, and I do always plan to write on this blog more than once a year, so we'll see, but it does bug me that these posts might not be more entertaining for the readers (not that I have readers!). Mia's life is interesting, but she has reached a plateau in terms of her development, which is good for her and for her parents, but not great for people who want to get some updates about her. So, here we go.
It is, of course, the anniversary of Mia's accident. On 18 April 2003, we were hit by a flatbed tow truck on the exit ramp of the freeway, breaking my collarbone and causing a traumatic brain injury in my daughter. Since then, our lives have been completely different than what they were before that day, and everything we do is filtered through how it affects Mia. Most parents, of course, know this feeling, as most of what they do take their kids into account, but because Mia is so reliant on us, it's to a larger degree than most people. It can be frustrating, as I've noted before, because we simply can't do some things because it doesn't work for Mia. We know it was a bit hard on Norah, as her childhood was affected through no fault of her own, and she didn't have a "normal" life because of her sister. It's a wonderful experience, too, don't get me wrong - Mia is a super kid, and we think she's had as good a life as we can give her. It's been 21 years. Sheesh.
This past year has been relatively quiet. Mia is still in school, of course, because the law says she can stay in school until the year she turns 22, and that means that next year is her final one, and she still loves it. She's so excited to get on the bus, and when I have to pick her up, she's always having a good time. Her teachers and aides love her and don't want her to leave, and I keep telling them that they need to write the legislature and get them to change the law! But we'll deal with what happens after she gets out of school later on.
Mia is interesting - she does learn, but very slowly, and she doesn't always let us know what's going on at school. I guess in that way she's a lot like most kids. Occasionally she'll say something that we haven't heard her say before, and we know she learned it in school, and we wonder why she doesn't say it more often! I bought a Philadelphia Eagles sweatshirt over the winter, and Mia thought it was nifty. She pointed at the eagle on the front and told me it was a bird. I told her it was an eagle, and we left it at that. The next day she pointed at it and said, "Bald eagle," which surprised me because I hadn't said that. She learned it at school and transferred that knowledge to a different situation, which is very nifty. She can do that, and we very much like it when she does, but it doesn't happen that often. It's very gratifying when she is able to take things she's learned and apply them elsewhere. She's been working with a speech therapist this past year - she doesn't always have one, but the one she has now has been here for a few years, which is nice - and her vocabulary has expanded a bit, which is nice. We try to encourage her to speak in longer sentences, like we always have, and she's made progress there. She also, as I noted, comes up with some words that she learned other places or ones she hasn't used in a long time but are still lodged somewhere in her memory. It's slow, but it seems like it's slightly easier to communicate with her and, more importantly, for her to communicate with us than it has been in years past. Not exponentially easier, but just a bit. We'll take any progress we can.
Physically, she's still the same, pretty much. She still gets physical therapy, although she did lose her swim therapy this past year, as the woman who ran the clinic decided to shut it down. I don't think they ever completely recovered from COVID, and she was getting older, so she decided the time had come. Mia had stopped riding horses a few years ago, but during the summer, she still went in the pool, and she very much enjoyed that, so it was disappointing that she wouldn't be getting that anymore. Plus, during the winter, instead of the horses, she was getting regular PT, which of course was a big help. She still gets PT at home and at school, but slightly less therapy than she was getting, which is too bad. Last year at this time we were waiting to hear about getting her Botox for her leg. She has involuntary twitching in her right leg (mostly; occasionally it migrates to her left), and she had Botox several years ago to help it, which it did, but it was a case of diminishing returns after a while, so we discontinued it. The twitching seems to annoy her, but it doesn't seem to hurt her, so instead of constantly getting shots that might not work, we just stopped doing it. The twitching comes and goes, so very often, it's not an issue. Early last year, though, she started another phase, and it became so bad that it was keeping her up at night, so we decided to consult a doctor, who suggested Botox again. She's older and bigger, so the doctor said she could use a bigger dose and target the muscle better - when she got it done years ago they zapped the entire leg. We tried to get her in, but we actually didn't get it done until December, thanks to our switch in health insurance and, it seems, the inefficiency of the doctor's coordinator (who was very nice about it, but also seemed to be lost occasionally). Plus, it didn't seem to work that well. We went back about a month ago for another shot, and the doctor told us that putting an orthotic on Mia would help keep her foot in place while the Botox did its work. Mia wore an orthotic some years ago, so we went back to the orthotic specialist - who's a very nice dude - and got fitted for another one. We'll see if that helps going forward. It's frustrating, because the twitching isn't really detrimental to her health (well, except when it keeps her awake), but no one knows what causes it or, really, how to stop it. It also seems to migrate to her left leg more readily when we Botox her right leg - we saw this phenomenon when we put rods in her back, as the torque in her muscles had to go somewhere, so it went to her hips. The brain is obviously sending messages to her muscles to twitch, and if the muscles in one leg can't do it, the brain will just send them to the other leg! But still, we'll see what happens when she gets the orthotic on her foot. Maybe it will help.
Other than that, nothing much is going on. I wrote last year that we were trying to get her onto the state's health insurance, a process which is still ongoing but closer to fruition than it was last year. We'll see what's going on with that in the months ahead. We just can't believe she's 21. It's wild.
She's a wonderful kid, of course, and we're very happy that she's in our lives and seems to enjoy life. We're doing all we can to keep making it better - it's hard, but that's what you do as a parent! If you're at all interested in the updates I've written over the years, here's a list:
Mia's accident
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