The Daughter Chronicles

Saturday, April 18, 2009

Six years of one, half-dozen of another

Every year on this date I have to post. Why? Long-time readers will recall that on 18 April 2003, I was in a car accident with Mia, which damaged her brain and sent us all on this long path of unusual parenting. Six years, and we're working as hard as ever with her. If you're interested, you can read the account of the accident here, even though it's very sad. But we're not about being sad today, we're about letting everyone know how she's progressed over the past year!

Her second year of full-time school has been as good as her first year, with even more progress and learning. She continues to enjoy going to school, and her teachers tell us that she's doing a better job interacting with the kids this year than last. She always says hello to her classmates by name, and although she still has a problem responding to people, she's always very friendly. (What I mean is, she will say hello to everyone, but if someone says hello first, she simply stares at the person. You have to coax speech out of her. It's rather odd. But when people allow her to speak first, she's very happy to ask how they're doing, which is about the extent of her conversation.) We haven't heard anything about them having to take her out of kindergarten class for excessive noise-making, as they did last year. She would get so excited that she would screech very loudly, to the extent she would distract the other kids. We haven't heard that they've had to do that this year, which is nice. She's getting better at integrating into a class with a lot of kids. Her school work is still a challenge and a chore, but she's working hard with it. She hasn't gotten much better at writing, but she's getting a lot better at identifying letters and numbers when she sees them in text. We have recently learned that there are going to be some upheavals at school with regard to her teachers, but we haven't gotten the total scoop yet. She's not going to have the same teacher next year, apparently, which kind of sucks, as she's already on her second teacher at the school, and both have been very good. Earlier this school year, I know, her teacher was trying to figure her out, and it would be nice to have the same teacher for a few years so that she can hit the ground running in August (so to speak). Her IEP meeting is in a few weeks, and I'm sure we'll find out more about her situation then.

The big event this past year, of course, has been her hip surgery. I've been writing about it, and there's nothing too new. She's been bearing weight, as the videos below this post attest, and she's slowly starting to gain some weight back, although we haven't weighed her yet since her doctor visit (I'm planning on weighing her at the end of this coming week, as that will be about a month since we saw the gastroenterologist). She seems to be slightly more interested in food recently, which is nice. Her scars are healing nicely, although her right hip is still bruised, which isn't too surprising as that's the hip that had more work done on it. She's still very sensitive when we move her around, but she's getting better. We're still hoping that standing and moving around more will do two things: loosen up her muscles so that it doesn't hurt to move, and make her eat more because she needs more energy. We'll see.

Her other therapies are going fine. Her OT is still working with fine motor skills, and Mia's getting better every time. When a coin is placed in her palm, she can move it to the tips of her fingers without a ton of effort, which is nice. She also recently put together a LEGO-type puzzle of a dragon. The pieces were very small, so she had a hard time manipulating them and putting them in the correct spots, but she managed. In speech therapy, she's doing very well at identifying sounds and animals, and she keeps making progress on the fabled horn hierarchy, which may sound goofy to you (and, to be honest, to me), but it's wildly important! It teaches her how to move her mouth in different ways, and she's doing well with the various horns. Obviously, PT has slowed a bit, but we're hoping that her new hips will be more stable for her. The goal, as always, is to get her out of her chair, at least occasionally. It can't be fun sitting down all the time.

As Norah gets older, we try to get out more with both of them. It's frustrating, because it's hard to do anything with Mia, but we manage. We've gone to a couple of theater productions, and although Mia is easily bored with them, she usually enjoys herself and even when she's bored, she doesn't misbehave. We went on a hike earlier this year (when the weather was still nice), and she had a good time. Paved trails are all over the Basin, so we're looking forward to doing more of that as Norah gets a bit older. We took her to the Tempe Art Festival last month, which was fun, although both she and Norah got a bit worn out. Mia gets tired so easily that it's hard to do things that last all day, but for 2-3 hours, she's usually a wonderfully happy kid. She did, however, like the Verde Canyon train ride we took in December - we're probably going back in autumn to see the colors of the leaves changing. We're going to Disneyland the week of Memorial Day and we're going to San Diego later this summer, so Mia and Norah should have plenty of opportunities to have fun. My parents will be at Disneyland with us, so that should be cool. If Norah can stop being scared of everything, she'll enjoy herself, but I know Mia will love it.

We continue to work to make Mia's life as excellent as possible. It's still extremely frustrating to think about her life and how much it's changed, but that's just the way it is. I don't know if she'll ever be aware of how different she is from most kids, but I do know that she'll always be ready to have a good time and interact with others. It's so nice when I take her to school and she says hi to everyone and waves at them and asks how they're doing. She's so cute when she does it, and it makes me think that she's going to keep getting better at talking and learning, so we have to keep pushing her. I haven't really seen a limit to what she can do, even with the problems she has in her brain. She knows how to walk, and there's no reason to think she couldn't walk with just some minimal assistance. She knows how to talk, so why can't she keep building her vocabulary? She has an excellent long-term memory, so I don't see any reason why she can't learn to read. Her short-term memory isn't that great, but we keep working on that, too. I'm not living in a dream world, and I realize that she's probably never going to live on her own, but as far as we can tell, there's no reason she can't have a decent life. She rarely even plateaus in her therapy, and although the progress she makes it mind-numbingly slow, it's still progress. It's certainly not ideal, but it's something.

Thanks for reading, everyone. I really do appreciate it.

I've written something like this every year of the blog. In case you're interested in her progress, here are the links: 2005, 2006, 2007, and 2008. I like looking back to see how far she's come. It's a long road, but at least it's a road!


  • Thanks for writing TDC, Greg. I rarely have any responses worth leaving, but I never miss a post.

    All the best to youse guys!

    By Anonymous layne, at 19/4/09 9:06 PM  

  • You're a good daddy. I'm sure that some days you don't feel that you are, but you are.

    By Blogger Roger Owen Green, at 20/4/09 1:59 AM  

  • Thanks, guys. It's always nice to hear from you.

    By Blogger Greg, at 20/4/09 5:14 PM  

  • Greg -

    Just saw this. Congratulations on the progress! Your daughters are beautiful, and you guys are awesome for working so hard for Mia.



    By Blogger Tyson, at 3/5/09 10:30 AM  

  • Thanks, Tyson.

    By Blogger Greg, at 3/5/09 1:12 PM  

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