The Daughter Chronicles

Tuesday, May 31, 2011

So, what's Mia up to?

I haven't been writing much about Mia because she's just been doing the same stuff, even though she's making steady progress. Last weekend we went up for a big family dinner at the clinic, so my mom took some pictures. Meanwhile, the doctor and case manager have made some noise about discharging her, which would be great news if I thought she was ready. They seem to think she's much further along than I do. They told me two weeks (which would put it at the end of next week, the 10th or so of June, while I think she might need at least another week, if not two. That would put her in the clinic for eight weeks, which is about where I thought she'd be. They told me their 2-week time frame is not etched in stone at all - they were just speculating. She's doing very well, but I'm not sure she's eating consistently enough or that she's eating enough variety. But she's making good progress, and I expect she'll definitely be home in June sometime.

Meanwhile, I think she's homesick. She's being much more aggressive than she usually is, and while it's due in part, I'm sure, to all the work she's being forced to do, I think some of it is because she wants to go home but can't express herself very well. In between Sunday (when I saw her last) and today (when I visited), she lost her computer privileges because she started destroying the keyboard. I could have told them not to leave her alone with the computer, because she will always destroy whatever can be destroyed (Russian anarchist Mikhail Bakunin once said something to the effect of "what can be destroyed should be destroyed," which Mia takes to heart - I like to think Bakunin would be proud of her), but they let her play with it without supervision, and that's what happened. She doesn't seem put out by it at all, because she always just moves on. But I think it's part of her homesickness, which is why I wish she could leave at the end of next week even though I don't think it's going to happen.

Anyway, she's doing well, and on Friday Krys and Norah are visiting for a week, so they'll be happy to see her. Maybe she'll go home soon after they leave! Wouldn't that be nice?

Pictures, pictures, pictures! We don't often get good ones of Mia smiling, so these are nice.

I like this picture because Mia is wearing her "I'm a star" sunglasses and looks very dismissive, just like a real star!

She also looks too cool for school here.

Not much of a smile, I'll grant you.

This is better even though she's not looking at the camera.

She's laughing here.

Finally, a good smile!

There you have it. I will have more information when I get it!

Thursday, May 26, 2011

Norah finishes her first year of school

I haven't been updating about Norah recently because, well, she's in Arizona and I'm in Pennsylvania, so it's hard to keep up. I do know that when she first got in the pool a few weeks ago, she actually said, "Shiver me timbers, that's cold!" Because she's, you know, awesome. But her first year of school ends today, and Krys told me yesterday that she picked up a bunch of awards. Yes, it's kindergarten, and in today's society, we have to give awards to everyone, but in her school, which is a bit tougher than a regular school, they seem to give standard awards and not necessarily to everyone. So that's nice.

Norah received honors for reading 25 books and 50 books, for knowing 120 Ayres (Ayers?) words, for "citizenship," for outstanding homework, something for math skills, and one for penmanship. I imagine most of the kids got the ones for reading and knowing the words, but I know not everyone got one for citizenship and penmanship. The citizenship one comes from the fact that she never got anything other than an "O" for her behavior (they can get "O" for "outstanding," "S" for satisfactory, and "N" for "needs improvement"), something not all the kids can say. According to her teacher, not many kids got an award for penmanship - the teacher could be lying, but I've seen some of the kids' penmanship and I really hope they didn't win anything! (That's mean, but some of the kids really need to work on their writing.) So while I'm proud of her hard work, I'm just as proud of her behavior and the fact that she does really try very hard no matter what she's doing in school.

Krys and Norah will be visiting Pennsylvania next week, which I'm looking forward to, and maybe I'll have some more to write about with regard to the younger daughter. Who knows. Right now, she's finishing her kick-ass first year at school. Yay, Norah!

Monday, May 16, 2011

Pictures! I have pictures!

Yes, it's true. I have been taking photographs of Mia at her rehab clinic, and now I will share them with you!

Here she is in speech therapy. That's her speech therapist and her occupational therapist trying to get her to eat. That's fun! In the second one she's actually eating peanut butter and jelly. Whoo-hoo!

In one section of the clinic they have a day room. Mia and the other kids hang out in it and work with the recreational therapists. Here she is playing with one of the toys.

This gives you an idea of what the day room looks like.

This is some of her physical therapy. She's bowling. Yay, bowling!

This is a light trainer, which offers some support but not as much as a gait trainer. She's pretty good at walking in it.

Mia really digs swings. So they made it part of her therapy!

Here's my parents and me hanging out with Mia. She just wants to watch TV; she doesn't care about these people who love her!

So those are some of the pictures of Mia as she works. She's working hard and making some progress. I hope it continues!

Monday, May 09, 2011

Mia's (temporary) new home

Last week, Mia and I flew to Pennsylvania so that Mia could start staying at Good Shepherd Rehabilitation where, it is hoped, she can work on her eating problems. She entered the facility on 2 May ... and hasn't been seen since!!!!!

Okay, not exactly. I drove her up to Bethlehem on Monday and got her settled in. The facility has a large day room where the kids can play with a bunch of different toys; a patio for when the day is nice; a cafeteria; and a bunch of rooms, in one of which Mia is staying (with a roommate). The kids go outside with the nurses, as well. On Tuesday I drove up and saw her on her first "official" day under her new schedule. She has speech therapy three times a day, and she gets physical and occupational therapy once a day, every day. Her schedule is pretty full, in other words. I watched a few of her therapy sessions. The speech therapist is trying to get her used to foods she doesn't necessarily like - she uses food Mia likes and moves to food she doesn't like. Yogurt, for instance, which Mia often ignores. They've been taking Cheerios (which she'll eat) and putting them in yogurt so Mia has to fish them out and lick them off. They get pretty messy - that's part of the point. Mia, of course, decided she would drink a lot of Pediasure the first day, even though we couldn't get her to drink anything before she arrived there. I told them it was probably the novelty of it all and she probably wouldn't keep that up, although I would love it if she does. The speech therapist is just trying to get her used to all the various food before they start pushing her to eat. Mia was having a good time with it even though she still wasn't eating a lot, so I guess that's something!

I also checked out a PT session. As they work with Mia every day, they're going to try to get her to use her left hand a little more. They want her to be able to brace herself on her left hand so she can use her right hand more, because right now if she's using her right hand and she starts to lose her balance, she stops doing anything with her right hand and braces herself with it. So they want to get her to use her left hand a bit more, if only for stability. They also want to work on her transitions from her wheelchair to a different chair or her bed, because I can't carry her all the time! Her PTs are excited about this, and I'm certainly hopeful that they can make some progress with it.

I went back on Thursday to meet with the doctor and her case manager. Every Thursday the therapists and doctors have a meeting about the patients' progress and what they're going to work on in the next week. Then they meet with the parents. The meeting about Mia wasn't all that exciting because she had just arrived and I already knew most of it, but it's still good to hear their plans. Finally, my mother and I went up on Sunday (yesterday) for a Mother's Day tea. That was fun.

I wasn't sure how often I was going to go up and see her, but after the first week, I think I'm going to leave her alone most of the time. The instant she sees me, she starts chanting that she wants to go home and watch TV. The nurses thought that was sad because she wanted to go home, but I had to tell them that for Mia, "home" only means a place where she can watch television - she can watch TV in her room at the clinic, and that makes her happy. I asked the therapists if she was demanding television when I wasn't there, and they said she was fine. So I'm more of a distraction than anything. She doesn't have a lot of free time anyway, and I'd rather she spend it in the day room playing with the recreational therapists (yes, they have recreational therapists, whose job is to play with the kids) than watching TV. Mia's perfectly happy when I'm not there, after all, so while I'm still going to visit her, I'm going to limit my appearances at the place.

The clinic has a nice group of kids, and Mia seems to enjoy it. They have some babies, but they also have a 5-year-old, a 7-year-old, an 8-year-old, an 11-year-old, and a 12-year-old, all with varying degrees of physical and mental disabilities. Some kids are there simply to recover physically from accidents, while others are there for reasons similar to Mia. The kids seem to like Mia, even though Mia tends to ignore them. But she likes saying hello to everyone, and when I'm there and I can watch her without her seeing me, she seems to be enjoying herself.

She's been in the clinic for a week now, and I do hope we can see some progress soon. That's not too much to ask, is it? I will continue to update her work as she moves on, and it would be nice to report good news.