The Daughter Chronicles

Thursday, April 18, 2019

Not-so-sweet sixteen

Today is the sixteenth anniversary of the car accident that caused Mia's traumatic brain injury, and as I do every year, I'm going to write about the year and how she's doing.
It's a tradition! Even as I update this blog less and less because there's not a ton to write about these days, I do like giving people an overview of how Mia is progressing, even if that progress is very slight and slow.

This past August she turned 16, which blows my mind, as I'm sure it does every parent whose kids grow up. She finished her first year of high school last May, had a fun summer going to her camp, and is now almost done with her second year of high school (she's technically a sophomore, but as we plan to keep her in high school until she's at least 21, the traditional designations for what year she's in don't really work). Her first year was good, but I think this year has been a bit better. The teacher and aides know her better, and she has had one peer tutor assigned to her all year, and while I'm not exactly sure what the girl does with her (I could ask, I suppose, but I'm not that curious), I have met her and she seems very nice.
She's learning quite a bit - she knows how to add simple numbers and she uses a stamp to "write" down the correct answers, and she recognizes a lot of words even though she can't really read. She has been eating quite well both at school and at home, so she's gained a little bit of weight - she's up to about 91 pounds right now, and it's getting harder to lift her, let me tell you! - and she always seems to have a grand time at school. She knows who the bus is picking up and in what order, so every morning she tells the driver who she (or he) needs to get next. She continues to enjoy getting out and about at school - she can't go into mainstream classes, but she still loves choir and she always digs P.E. We're just impressed that she does as much work as she does, because when she's at home she is far too distracted to ever try to get her to do brain work.

She's doing well in therapy, which is nice. She continues to swim in the summer and ride horses in the winter, and she made great strides with her occupational therapist this year. She was working on Mia getting her shirt off, which Mia likes to try when we're changing her, which I don't let her in the morning because it takes too long but we often try to encourage when we have some more time (usually we're too impatient, but that's just the way it is).
She also got much better using a knife this year, which I find fairly impressive, and I watched her do it once and saw what a good job she's doing. Unfortunately, her OT is leaving the state, but we're hoping that Mia can pick another one up who can continue working on her with her fine motor skills, because they've gotten much better this year. Of course, the big news this year was that she finally got her activity chair, and that's been working out quite well. She likes sitting in it, and she's standing in it like a pro. She often likes to stand up just to stretch her legs - she gets tired of it quickly, of course, but it's nice that she doesn't really whine about it. If you get close to her she might say "down" quietly, but she's not standing there whining. I think she likes it because it makes her tall, and she gets a nice, slightly different perspective on the world. At school, this year they were still putting her on the standing frame that is simply a flat board with restraints on it, but the therapist there wants to get the chair we got for the school, mainly for Mia, I guess, but probably for other kids, too. Mia's home PT recommends this chair for almost every kid she sees - it's only not great for kids with very low muscle tone - so she wonders why they haven't already gotten one. Of course, I doubt that it will take 13 months for them to get theirs, but I hope they have it when school begins in August, because I know it's very good for Mia. We shall see.

Her seizure activity has been bizarre. She was having a few every once in a while, and we had discussed getting some CBD oil for her, as we thought it would help.
I took her to the neurologist in October but forgot to discuss it with him, and we were going to wait because she was seeing him again in March. Right at the beginning of the year, though, she started having them every night. They're still very short, but she would have at least two and occasionally up to five every night, and it would wake her up and cause her to be sleepy in the morning. It was frustrating because she went through a period for about two years where she didn't have any, and she had never gone through a period where she had so many. After two weeks we went to a local CBD dispensary and got some oil and some ointment for her twitching legs, which are an intermittent problem (no one knows why her legs twitch, not even doctors). We started giving her the CBD oil and noticed an immediate improvement, and it's taken a few months, but she's having fewer and fewer seizures - less than once a week over the past month or so. I took her to the neurologist in March and talked about it, and he was fine with it - he gave me a few pointers about it, and noted that the very few studies that have been done on CBD show that it helps best with seizures. So that was encouraging. The ointment didn't work as well - her leg twitchiness comes and goes, and it came and went while we were applying the ointment, so it didn't seem to have any correlation with the ointment. Both products are a good chunk of change, so we decided to forego the ointment and keep giving her the oil.

There's not much else going on.
She's doing very well, she's working pretty hard in school and she's liking standing at home. She eats a good amount and tries some new things every once in a while, and she enjoys some of the new DVDs we bought her for Christmas (she digs the Wiggles and Mickey Mouse Clubhouse DVDs we got her, including the Wiggles DVD which guest-stars Lou Diamond Phillips, of all people, but she is still not happy with Moana or The Incredibles, and I'm about ready to give up on those) and we still try to get her to play the keyboard we got her, which she does occasionally. She was much better at moving her old wheelchair because it was narrower, but she's gotten decent at moving the new one around, although she usually doesn't have much reason to. She's still a terrific kid, of course, and she seems to be enjoying life as much as she can, so I guess we can't really complain!

I always link to the post about her accident, and I always link to the annual updates: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, 2017, and 2018. I can't believe it's been so long since that awful day, but as always, we're very happy she's with us and she always makes our days brighter. Thanks for reading, everyone!