The Daughter Chronicles

Monday, April 18, 2016

Unlucky 13!

I haven't written on the blog this calendar year because, well, things have been steady. Normal and steady. I could write something every week or so about how things are progressing normally, but that wouldn't be very interesting, would it? However, it's that time of year again - the anniversary of the accident that caused Mia's traumatic brain injury, so I want to write about her year.
It's just what I do!

The big news from this past year has been, of course, her continuing recovery from spinal fusion surgery. She had the surgery a year ago (plus a few days), and it went very well. Then she got her staph infection, which was less fun. That cleared up, though, and she's been on antibiotics ever since, which have kept the infection at bay. The problem with staph infections is that they're very stubborn and hard to kill, so the doctor doesn't know if it's completely gone or not. He told us that it tends to get into the smallest places, like the screws keeping her titanium rods attached to her spine, and if it doesn't get rooted out, they might have to open her up and take the screws out. This sounds awful, but it's not too bad - the whole deal with spinal fusion surgery is that the rods fuse to her spine, so the screws are, after a while, superfluous. Doctors leave them in because, of course, to take them out means opening up her back again, which is never a great thing. So it's not that they'd undo the surgery, but we'd like to avoid it if we can.
The only way to tell if she doesn't have the infection anymore is to take her off the antibiotics and see what happens. Fun! She has an appointment with her doctor in May, and that's exactly what he's going to do. So we're hoping that the infection is dead and gone. That would be nice.

The surgery has really helped her a lot. She's sitting up much better (although she still twists her hips too much, something we'll have to bring up to the doctor) and she seems more alert, probably because she's not expending so much energy sitting up, which I think wore her out a lot. We still put her to bed between 6 and 6.30 every night, but she used to look really tired as that hour approached, and that's not the case anymore. We'd like to keep her up a bit more, but she doesn't seem to mind going to bed that early and we think she still needs a lot of sleep. If it ain't broke, don't fix it. She's also been standing in a stander at school, which is great. She has PT in the afternoon on Tuesday, which I always forget about, so I haven't seen her standing yet, but her aide tells me she looks pretty good. We don't think she'll ever walk even with a stander - she never seems interested enough to get anywhere - but if we can get her upright again for significant time during the day, I think that would do her a lot of good.

She's been doing really well in terms of weight, which has been a constant struggle for years. Last year at this time she was about 66-67 pounds, and currently she's about 82.
That's a huge leap, and it coincided, we think, with a growth spurt (she did turn 13 in August, after all), but she also was eating quite a bit for a few months this winter. She's slowed down a bit in that regard, but she looks great - actually like a healthy person rather than the skeletal girl she used to be - and she seems to have more energy. Of course, that's expressed by grabbing and pinching, as she always does, but that's just something we deal with all the time, and I doubt it will ever change. We're just happy that she's filled out a bit, because she is much healthier now than she's been in the past.

Her therapy continues, with her Occupational Therapist rejoining us after a few months off last year when Mia became so impertinent it was hard for the OT to work with her. After she recovered from her surgery a little, the OT came back and Mia's behavior has been better. After a year without a home Physical Therapist, she got a new one in the fall ... about the time she lost her Speech Therapist, who went to work for a school, which I guess is a bit more stable. So she's been without a Speech Therapist for six months or so. Her PT has worked pretty well with her, and once we move (we've outgrown our house, so we need to find something else), we hope to have more room to get our own stander. It would be nice to get her upright more often than what she does at school, but standers take up a lot of room. She's been back on her horse the entire winter and is doing well there (soon it's back in the pool!), so that's nice too. She seems to be talking more, which I assume has something to do with the more energy, but I also hope is because her Speech Therapist at school is working with her, too. She's not quite a sparkling conversationalist, but she's always getting better at using words correctly, which is keen.

She began junior high this year, so she's at a new school, and that's gone well.
Her teacher is a veteran (which isn't always the case with special ed. teachers), and her aide is very good with her. They love Mia, of course, even though she has been very mean to her aide a lot, unfortunately. She seems to like the kids, too - some of them she knew in elementary school, which is nice, but others are new to her, and they seem to like her and she seems to enjoy their company, although they have to watch her because, of course, she might grab them at any moment. She began her period in December and we put her on birth control pills to control that, and after using one kind that didn't work, the latest pills seem to be controlling her menstrual flow better. It doesn't seem to affect her behavior too much - she was grouchy a lot before puberty! - but if we can eliminate anything that makes her life more difficult, we'll do it. So socially, she seems to be doing well.

Obviously, she still has plenty of issues. We don't know if she's going to need surgery on her wrist so that we can straighten it out - we're still hoping casting it will fix the problem, but who knows - and, of course, she still has a traumatic brain injury. But her surgery went well and it seemed to push her into a new stage, one where she's able to engage a bit more because she's not trying so hard to sit comfortably and her back doesn't bother her all the time. In the past year, she seems to be more part of conversations with us, even if she's still not able to talk very well. Her sense of humor is quite fun - she loves bodily noises, of course, but she also loves it when Mommy or Daddy make "mistakes," like dropping something on the floor - and she's gotten better at doing funny things (well, funny to her) when she knows we're not going to like it.
She gets a mischievous glint in her eye and she makes sure we're looking at her, and then she does something we don't like and laughs when we tell her to stop. So while she still doesn't talk a lot, it's nice that she's able to interact with us a lot, even if she's doing things that frustrate us. Kids - what are you going to do?

As usual, every day is difficult with her, and as she grows, it's going to get even harder (I went to Seattle last weekend, and Krys had to move her all by herself, which was no fun for her), but we'll probably be getting a lift soon to help us move her, so there's that. But every day is great, too, because she's alive and fairly happy (except when we do something horrible like move her or dress her or brush her teeth - we're monsters, really). It's amazing to us that it's been 13 years, but it's been quite the experience. As she gets older, we know we're going to have many more challenges, but at least we know we've been able to handle it so far. She's a great kid!

Previous updates: 2015, 2014, 2013, 2012, 2011, 2010, 2009, 2008, 2007, 2006, 2005. And here's the story of her accident, which I always link to in case people don't know about it.

Thanks, as always, for reading, even though I don't update as much as I used to. I guess that's a good thing, because it means nothing too traumatic is going on!

(These last two pictures are from this morning, just to give you an idea of what she looks like right now! She just got a nice haircut, because she still pulls her hair out too much for our liking and we try to keep it short so it's not easy for her to do it. Yes, it's very vexing.)