The Daughter Chronicles

Wednesday, January 30, 2008

Videos of Mia

I have been trying for some time to find time to upload videos onto my computer and thence onto the blog, but didn't have time until my parents visited this week, and as my father is a computer genius, he could puzzle the whole thing out! So now I have a YouTube account and a camcorder, and there's no stopping me!

I wanted to post videos because pictures don't really do justice to what Mia is working on. I can show pictures of her in her gait trainer, but you can't really visualize how she moves in it. I can describe how she sits up, but it's tough to imagine the struggle she has in doing it. So I'm going to try to film her doing various things, beginning with these three clips below.

The first is one of her sitting up during one of her physical therapy sessions. This was filmed the day after Christmas (so about a month ago), and she's gotten even better in the days since. She occasionally doesn't want to sit up at all, but usually she zips right up. This is a good example of the way she sits up, however.

The second two (from the same day) are of her walking with her physical therapist. I'm holding her hands, because that's how we do things around these parts! The first video is from a different angle than the second one, because when we watched it on the camera screen it was much darker, and I told Krys she needed to move to a different vantage point. That's why she calls me "Señor Spielbergo" in the second video - she was being snotty. That's why I love her!

For both of these videos, I ask that you ignore my whiny voice. I had a stuffy nose, so my voice was even more annoying than it usually is. Pretend it doesn't exist and you'll be much happier!

Also, Norah is kind of wandering around in these. I'll get a video of her at some point, but this is all about Mia right now!

I hope you enjoy these. Now that I know how to do it, I'll have to post some more of them!

Friday, January 25, 2008

Mia in stirrups

I always try to post once a week, at least, so when I don't even do that, I feel guilty. I've been very busy the past few days, because my parents flew in to visit and we've been running around. Plus, there's just not much going on. Mia is doing fine in school, Norah is a typical two-year-old in that any slight change in her status quo results in a great deal of screaming on her part until she realizes the entire world is NOT trying to kill her or otherwise deprive her of fun, and we're doing our thing. So it's just kind of moving along.

However, this morning at horse therapy, she got to ride with stirrups, which is pretty cool. I wish I had known, because I would have taken pictures (I didn't have Norah with me because of the grandparents' visit, so it would have been the perfect day to go outside and check her out, because Norah misbehaves so near the horses, as she loves them so much!). But her therapist said the stirrups really helped her sit up straighter and keep her torse stabilized, with is, after all, part of the point. So that was nice.

Next week she has an appointment with an orthotic specialist who is going to fit her for some strange device. I'll definitely post about that, but I'll try to have something to say prior to that as well. I know I have a loyal audience of about 3 people, so I feel bad when I go this long without something new!

Thursday, January 17, 2008

Mia odds-'n'-ends

On Monday the 7th we attended Mia's second parent-teacher conference. Mia is doing very well in school, although she still has a lot of work to do. She can sign her name somewhat well, which is nice. You have to hold her hand, but she knows how to make the letters and she knows how to spell it. Her problem is that she's holding the pencil so tightly and concentrating so much on the "M" and "i" (she does fine with the "a," for some reason) that she can't lift the pencil off the paper. She gets to the end of the "M," for instance, and stops. Occasionally she keeps going and makes a scribble, but she has gotten better at stopping when she should. However, she stops and can't do anything, because she can't lift her pencil. It's weird, but we're working on it. She's working on writing the alphabet and picking specific letters out of several, and it's slow work. She can do it one day and fails the next day, which is to be expected from all children, not just brain-damaged ones. We're hoping that these things can get into her long-term memory, because that's pretty good. She can name books she hasn't read in six months and then "read" along with Krys perfectly well. So we know she'll remember it once it sticks, but we have to get it to stick!

She's doing fine in other aspects of school, too, and apparently eating fairly well, trying new things and actually getting quite a bit of food into her. That's always good to hear.

This past Monday we went to Phoenix Children's Hospital to see her neurologist. He wanted to check her out after she had been in school six months. He hardly looks at her anymore, because he's never terribly concerned about her. I told him that she startles very easily when she hears a loud noise and that we were wondering if it was a seizure, but it's not, apparently. We wanted to know because it's been well over two years since she had a seizure and we were hoping we could cut back on her medication. He said we could start lowering the dosage on one, which was cool. Maybe soon she won't need any at all. Other than that, nothing new came out of her appointment. We'll see what he says in a year!

Finally, Krys came home on Tuesday night. She went to Pennsylvania for a few days to visit her grandmother, who had a stroke the week before Thanksgiving. It was her third trip back since, and the kids always miss her. On Wednesday morning she went into Mia's room before she left for work to say hello. I had just woken Mia up (it was about 6.45, and she needs to eat breakfast before going to school, so I get her up about then) and she was a bit groggy, but she said Good Morning to me and told me she was ready to go to school. Krys came and said hello and gave her a kiss, and Mia ignored her. She actually looked around her at me impatiently, as if to say she wanted Mommy out of there. Krys was very sad because Mia seemed mad at her, and I was sad for her, but again, it's a perfectly normal reaction for a kid to have when her Mommy goes away for a few days, and anything about Mia that's normal is a good thing, even if it's a negative thing. Krys came home last night and read to her and spent some time with her, so all appears forgiven for now. I know Krys felt bad about it, but I always like when Mia acts like a regular kid.

Norah, of course, is fine. And by fine I mean she's two and a pain in the butt. But that's why we love her!

Saturday, January 12, 2008

Toilet-training Mia

After a longer break than usual, how's that for a good first subject of the New Year?

We have been thinking about toilet-training Mia for a few years, but it's very difficult. We have a potty seat, but because she can't sit very well, she doesn't balance on it except with a great effort. So we usually have to sit there and hold her, which isn't terribly conducive to natural elimination functions! So we started looking around for a toilet seat for her. We found one, got the money for it approved in her yearly budget (we have to submit her expenses to the court annually, at which new funds are released, and we occasionally anticipate greater expenses for things like toilet seats), and then ... nothing. Well, nothing because I kept forgetting to order it. Yes, I'm an idiot. She went to school, of course, and wasn't around that often, and it just kept slipping my mind. Finally, in December, I called the company that makes them and ordered it. It arrived a week later.

Yes, a week later. It's really astonishing how fast things get done when insurance isn't involved. Of course, that makes life with insurance much more frustrating, too. We don't often bypass her health insurance, but for large Durable Medical Equipment (DME) purchases, we do because of the hoops through which you must jump to get them, plus most health insurance has a pretty low ceiling on the amount they cover ($1000, usually). So for things like wheelchairs, we just get the money from her account and let the court know, and it's never been a hassle. I'm not a big fan of health insurance as it now stands, in case you can't tell.

The toilet seat is very easy to use. It has a foot plate with straps to keep her feet from flying out, and a lap belt to secure her. She has no problem sitting on it, and actually seems to enjoy it a little. Of course, she doesn't pee at all. I have tried to put her on it when I think it's about time for her to go, but she just sits there for a few minutes smiling and batting at the shower curtain, and then finally she says "All done pee" and wants to get off. She doesn't want to hear about trying to pee after that! A few times when I knew she had to poop, I put her on it to encourage her. She immediately stopped trying, which is odd, because you think it would be easier with nothing stopping her! Usually she tries to poop while sitting in a chair, which seems a lot harder! So we're not having much success.

Still, we're going to keep trying. She's getting to the point where we'll have to start special-ordering her diapers, and although I'm not sure if she'll ever be able to go without diapers, it would be nice if she could at least try it because she knows when she has to go. As with everything with Mia, it's going to take a while, but if there's one thing we've learned in the past five years, it's patience. She will not defeat us!!!!!