The Daughter Chronicles

Sunday, November 27, 2011

So Norah had to get a haircut to match Mia's ...

Norah's 'do was getting a bit shaggy, so she got a cut. Not quite as severe as Mia's, but her hair is thinner and, of course, she doesn't try to chew on it. I was going to post the before and after pictures anyway, but the "before" photo has something interesting:

You can't really see her hair that well, but you can see her playing with Krys's iPhone. Yes, she's discovered the addictive nature of the iPhone. I told Krys that she was leading our daughter down the dark path, but she didn't care. Norah is probably already more technologically advanced than I am - that's not hard, of course, but she is only six. Soon she'll be downloading apps into her brain directly and she'll leave humanity behind!!!!

Until then, she looks awfully cute with her new haircut, doesn't she?

Sunday, November 13, 2011

Mia's new wheelchair and other news

Last Thursday, Mia went to Phoenix Children's Hospital to get an X-ray of her hips. As I've mentioned, her muscles have been so tight over the past months and we don't know exactly why, so we had to check to make sure that her femoral bones weren't coming out of her pelvic bone, which would cause some discomfort, obviously. When she saw the physiatrist a few weeks ago, she thought it would be a good idea to get an X-ray, so away we went!

It turns out that there's nothing wrong with her hips. The thigh bone is right where it should be, in the pelvic socket. The doctor didn't say anything about whether she's going through a growth spurt, but I didn't push it because what can he do about that? All I cared about was whether her bones were in the right place, and they were. It's good news, but it's also annoying because we still aren't sure why her muscle tone went haywire a few months ago. I guess we're still sticking with a growth spurt. We're still working on stretching her, and she's making a little bit of progress, so that's not bad.

On Friday her wheelchair finally arrived. We got her measured two months ago, and the guy who was working on it told me that if I paid for it myself (and waited for the insurance to reimburse me), it would get here in 2-3 weeks. If I waited for the insurance, it would take two months. So I paid for it, and it still took two months. Oh well. It's here now, and life is good. Check it out:

It's a nice chair for Mia. It has lateral supports by her chest, shoulder straps, and a chest strap. As she's been leaning to her left a lot these days, this helps keep her up. She also has lightweight wheels so she can move it better, and projections on the rims are there to help her move it with her left hand (the theory is that she can reach the projections and tap them instead of actually holding onto the rim, because she can't hold onto the rim). She also has a tray, which her last chair didn't have. So it's pretty neat. She hates it - it keeps her upright, which isn't a great stretch but it's better than what she usually gets, so after she's been in it a while, she starts to get really annoyed. But that's okay - she needs to stretch, after all. We'll see how it goes at school. I imagine they'll be happy because she has to sit up, and she's been having trouble working because she wants to bend over all the time.

She's a tiny bit stretchier than she has been, so maybe the baclofen is working. We'll see. We hope that we can start stretching her more and she figures out that she can move the chair more easily than she could her other one. That would be nice, especially if it makes her more amenable to actually eating. Oh, the hopes and dreams we have!

Sunday, November 06, 2011

Mia's new 'do!

Mia got a haircut!

This is the shortest her hair has ever been, I think. We get her hair cut short because she tends to start putting it in her mouth as soon as she's able, plus the thickness of her hair makes it difficult to comb. This time, she's been twisting her hair with her finger a lot more (she's always done it, even as a tiny baby, but it's gotten worse as her hair got thicker), so we told the woman who cuts her hair to give her a pixie cut. If it were up to me, she would have gotten the "Sinßad O'Connor"! I don't think Krys would have enjoyed that, though.

Doesn't she look cute, though? I know, she always looks cute, but now she looks even cuter!!!!

Tuesday, November 01, 2011


Norah dressed as Rapunzel for Halloween:

She had a fun time trick-or-treating, but she didn't go to a few houses because she was too scared. I stayed home, because Mia didn't want to go. Usually Mia only wants to go out for a little bit, but this year, with her muscle problems and the medications making her sleepy, she was almost out by six o'clock, and she really didn't want to go out. Oh well. Maybe next year! So I don't know much about Norah's sojourn around the neighborhood. I just know she enjoyed it! As usual, I doubt if she'll eat much of her candy. She likes candy but doesn't eat it excessively, and anyway, we won't let her do that. I suspect that like last year, it will hang around here for a few weeks and then Krys will take it into work, where it will vanish quickly. It's the cycle of life!