The Daughter Chronicles

Friday, April 24, 2009

Norah being Norah

The other day, when Krys came home from work, she asked Norah how her day was. My child responded by spinning a yarn about me yelling at her. When my lovely wife asked why Daddy was yelling at her, my child answered:

"I was just being Norah."

So true, daughter of mine. So very true.

(For the record, I wasn't yelling at her. I freely admit when I yell at her, but that day was pretty calm. She asked for a salad for lunch but then changed her mind, and I briefly tried to convince her to eat a salad because it's, you know, good for her. She got upset because, I guess, I dared question her extremely changeable nature, so I suppose that turned into "yelling at her." It was totally worth it to hear her pull out that excuse, though.)

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!

Monday, April 13, 2009

Video evidence of Mia's recovery!

Yes, it's true! Mia is bearing weight again, and that's good news. I decided to make a brief video of her sitting (sort of) and then standing. Be warned - she's not happy about it, so there's a lot of crying. In the middle of the second one, I had to put the camera down to help her PT.

Anyway, it's progress. It's obviously going to take quite some time to even get her back to where she was, but that's cool. At least she's starting to work again! Woo-hoo!

Sunday, April 05, 2009

Some good news regarding Mia's recovery

Mia had an appointment with her hip surgeon on Thursday, and the news was good. He X-rayed her, praised his own work (I love it when doctors do that - "This looks great!"), and said she's healing very nicely. On the X-rays, you can see that her hips have a large range of motion, and nothing looks out of sorts, so that's cool. He said she could start bearing weight, which is also quite nice. As I wrote before, her muscles are very stiff, and stretching them every day just isn't cutting it. What she needs, I believe, is to stand up and start using them again, so I was happy to hear that she could do that. I'm sure her PTs have all sorts of evil things planned for her to use her leg muscles - we'll find out this week! I have mentioned to others that I need to soundproof our house because the screams will cause the neighbors to call CPS - although, given their track record in Arizona, they wouldn't care. I know it's going to be slow to get her back to where she was, but at least she can start this week.

The doctor also said that because she's healing so well and quickly, he can take the plates out earlier than he thought. The plates usually stay in for six months, which would be 26 July, and her (outpatient) surgery was scheduled for the first week in August, as we'll be out of town on the 26th. Now, however, she's getting the plates out on 8 July. He said the right side seemed to be bugging her a bit, and there's no reason to leave them in any longer than that, so she'll be metal-free a month earlier than expected! She may have to recover from a lot, but at least she recovers fast!

She's eating a little bit better, but we're still working on that. I hope that when she starts doing more, she'll need more energy and therefore will eat more, but we'll see. I'm just happy that she can get back to work!