The Daughter Chronicles

Friday, June 15, 2012

Norah's fascinating fiction

Norah enjoys reading and she enjoys playing with her dolls and making stuff up, so it's not surprising, perhaps, that she likes writing stuff. She wrote this at summer school with a friend of hers - according to her, she wrote and the friend drew the pictures, but I'm not sure how much input the friend had into the overall story. Krys posted this on her Facebook page, and most people agreed that Norah is learing well how to be a chick, as it's very important in the story to mention the shoes. THE SHOES!!!!

Saturday, June 02, 2012

Another day in the hospital? Yay!

Mia spent Friday afternoon in the hospital, but not for anything too serious. She had a Botox injection scheduled, and considering we had been waiting a few months for that to get approved by her insurance company, it was nice to finally get it out of the way. She's had Botox before, but not for over three years, so we'll see how it works this time. For those of you who don't know, Botoz is used on people with high muscle tone to keep the muscle from tightening more, enabling us to stretch Mia more than she has been able to stretch for months. At least, I think that's how it works. Anyway, it tends to help her, even though we like to try other things first. We haven't needed it for so long because her muscles have been okay, but since August, when her muscles started tightening again, we knew we'd probably have to get it done sooner or later. The medication she was taking as a muscle relaxant helped her, but not enough. So off we went!

The process is very quick - from the time they put her under (her hippotherapist was surprised that they knock her out; she says she's had kids get Botox when they're awake, but Mia's doctors have always knocked her out) to the time we left the hospital was about an hour. Of course, they were running late and we were supposed to be there 90 minutes before the scheduled time, so we ended up being at the hospital for three hours, but the actual injections don't take that long. Mia was groggy, as she always is, but she also wanted to go home right away, and she was lively in a few hours. She did go to sleep a bit earlier than usual and slept a bit longer in the morning, but that's about all the ill effects she feels. Botox usually lasts about 2-3 months, but it's most effective between 3-6 weeks, so we're hoping she can start standing more and help her muscles a bit. The doctor did mention that her knee joint has some contracture (a permanent shortening of a muscle, which sucks) and that she'll need a full leg brace to help that, but we already knew that, and if we can skip surgery to actually remove muscles, we'd like to do that, so this coming week I have to call her orthotic guy and talk to him about a brace. Fun! Here's what Botox injection points look like, by the way:
She got some of it in her arm, but most of it in her leg, which looks the same. The doctor worked on the hamstrings of her left leg a lot, and she said for Mia's age and weight, she could have used much more, but she wanted to see how Mia handled it. So if it works but not too well, she can always get a bigger dose. We'll see.

In other (much more crappy) news, our final appeal to have Mia's physical therapy continued to be covered by insurance was rejected. A year ago, we got a letter from the insurance company saying that Mia wasn't making any progress with PT and that anything she gets out of it could be accomplished with a home exercise program. We were a bit peeved by this, so we appealed it. They rejected our appeal, but we had the option of appealing to an outside board, which we did. They too rejected our appeal. So that stinks. The problem is that they continue to consider Mia's therapy "rehabilitative," when it's not at all - she wasn't "habilitative" in the first place, so therapy is not re-teaching her anything, it's teaching her stuff she never knew. I admit that it goes very slowly, but she has made a lot of progress over the years, but I guess that's not good enough for the insurance company. Everyone who works with Mia agrees that she needs PT, but I guess it's a good thing that people who have never seen her or spent any time with her are making those decisions. I wouldn't be too bent out of shape if the insurance were completely free, but, of course, Krys is paying a LOT in premiums, and they still don't want to spend the money. I mean, how about you stop charging us premiums, and then you can cut off some necessary coverage? I'm a bit mad about this, but I guess we'll just have to figure out if we have any other options. I'm certainly glad that health insurance in this country is run like a business, because no one ever gets screwed when things are run like a business, right?

Blech. At least she might be a bit more flexible now. We need to get her on her feet, and this plus her medication plus a leg brace will help a lot. At least, that's the plan.