The Daughter Chronicles

Tuesday, January 26, 2010

Yay! More surgery for Mia!

Yes, it's true. And no, I'm not happy about it. Oh well.

Last week I took Mia to her orthopedic surgeon to get her X-rayed. She has been crying a lot when we move her, and it seems like her muscles never get looser even though we stretch her a lot. Her PT was mystified, because it seems like a lot of it is her overreacting to movement (which she does a lot), but obviously something was making her uncomfortable. He didn't think it was a muscle tear or a muscle caught in a bone joint or anything like that, because then she'd be in pain all the time, and she's not. So we figured it was time to take her to the doctor so he could look at her hips.

Well, the news wasn't great, but at least we know what it is now. Her right adductor muscles on the inside of her legs, which are very high in tone, are still causing problems. During her initial surgery, the doctor cut one of the muscles, and when he removed the plates on her hips in July, he cut another one. The remaining ones, however, are still strong enough to pull her leg across midline, which happens quite often. They're pulling so strongly that they're pulling her right hip out of its socket. This is, not surprisingly, causing her some distress. There's also a good bit of scar tissue in her groin that he wants to get rid of. He has to cut (he and Mia's PT use "release," which sounds less horrible but is also less descriptive) a tendon in her groin, clean up the scar tissue, and fix some of the hip capsule, which is the bone at the socket where the leg bone fits in (I love that it's called a "capsule"). He claims that the surgery will be on an outpatient basis, which is nice, but that she'll have to wear a Petrie cast for 3-4 weeks afterward. A Petrie cast is a cast on both legs with a bar in between them, keeping them abducted - wide apart. This is, presumably, to allow the bone to lodge further in the socket. He said there was no reason she would have to skip school, but of course her therapy will be set back once again. Sigh.

It has to be done, of course, but it's still frustrating. Krys was a bit angry at the doctor because this happened, but I think she has realized it's misplaced. He did cut two tendons and couldn't predict that her muscle tone is so high that it would pull the bone out of the socket. I just hope that cutting a third tendon will alleviate the adduction, because if it doesn't, she'll have to go back to the doctor to get yet another one "released" before this can happen again. I just wish we had caught this sooner so all he'd have to do is that and not mess with the hip, but I guess we know better. She was due for a follow-up appointment in March, and I plan to take her in much sooner after he takes the cast off just to make sure everything looks fine. It didn't seem like her muscles were pulling the leg so violently across midline, which is why we didn't think of it. I just thought she had been out of action, therapy-wise, for so long that her quadriceps had become insanely tight. It's frustrating because we can't ask Mia what's wrong, and it still doesn't seem like her hip is hurting her all that much. I suppose it was the same situation before her initial surgery, because her hips were in worse shape and she was still able to walk and stand without pain. We can never tell with Mia, because she doesn't often tell us if something hurts.

So it's back to the hospital, another delay in her therapy, more annoying issues with her general care (exactly how does one go to the bathroom while wearing a Petrie cast, anyway?), and potential problems with her eating. The last time she had outpatient surgery, nothing much happened to her appetite, which was nice. However, she's making a lot of progress in that area, and I don't want anything to compromise it. We'll just have to cross our fingers.

We haven't scheduled the surgery yet, but I hope it's soon. We'll see. I wouldn't mind doing it in early March, when she's on spring break, because then at least she can stay home for a week and recover just a bit. I don't completely trust the people at school to take great care of her, and if we can keep her at home without her missing any actual school days for a while and figure out how to care for her, I'd like that. Of course, if she goes in for surgery before that and we think it would be better for her to skip some school, I don't have a problem with that, either.

Yes, the fun never ends with Mia! She's just lucky she's so adorable, or we might have sold her to some wandering Gypsies by now!

Tuesday, January 19, 2010

Mixed signals at Mia's parent-teacher conference!

Last Friday Krys and I went to visit with Mia's teacher, the one we'll call Ms. First-Year, as it's relevant. It was the quarterly review, and we hoped that Mia's school issues had been worked out. Ms. First-Year had a great deal of praise for how Mia is doing right now in school. Mia has been working harder and enjoying herself more. Part of this is due to the fact that she's eating more, so she has more energy. She's also been feeling better (for the most part; we have an appointment with her orthopedic surgeon tomorrow to discuss something that's vexing us about her recovery) and is able to do more around the classroom. Ms. First-Year told us that she's doing fairly well with numbers, she does well on the computer, and last week she assisted on a spelling test by saying the words the other kids had to spell out loud (after some help from the teacher, of course). She is eating well, as I mentioned (she went to the gastroenterologist yesterday, weighed in at 39.5 pounds, and got kudos from the doctor), so that's not too big an issue anymore. She still pinches way too much, but it's rather odd - she doesn't pinch Ms. First-Year all that much, because Ms. First-Year is stern with her. The aides, I guess, are less stern with her, and also (apparently) a lot slower, because Mia pinches them. It's not that difficult to anticipate her pinching, so they must not be paying attention when she's in a "pinching" mood. We've been trying and trying to get her to stop pinching, but nothing seems to work. It's quite annoying.

So, all is well, right? Well, not quite. Ms. First-Year still seems quite flummoxed as to how to deal with Mia. As I wrote in November, she's still locked into this mindset of Mia keeping up with the rest of the class, even though that's not the point. The point is that Mia's IEP is the only barometer of her progress, and if they're working on the goals in the IEP and she's doing okay with those, that's what matters. Ms. First-Year still seems obsessed that Mia is the "lowest performer" in the class (she told us that directly, which might seem crass, but it's not like we don't know it) and that she has to devote so much individual attention to Mia. Well, first of all, she does has three aides in the class, so I'm not sure how much attention she's devoting to Mia (although if Mia doesn't pinch her but she pinches the aides, maybe she is devoting more time to Mia). But it gets back to the whole idea of a special education class - each kid has an IEP, so even if the other kids in the class are similar, they still have individual goals that they have to meet. Perhaps all their goals are similar so she can work on them all as a group, but that's just luck. Mia deserves an individualized education plan (in a perfect world, every child would get one), and if you can't handle that, perhaps you shouldn't be in special ed.

The option she brought up was moving Mia to the "moderately disabled" class. A few years ago, when Mia was first going to elementary school, we checked out both the moderately disabled class and the one she's in now. We decided that the moderately disabled class was beneath her skills while the one she's in now (I don't think it's technically called the "mildly disabled" class, but let's call it that) was above her. When the program at her former school was disbanded (much to our regret, as it worked perfectly for her), we decided that we'd rather put her in a class that was difficult for her than one that was too easy. Ms. First-Year made a big deal about how in the moderately disabled class she'd be one of the best students, but that's just not a big deal for us. I told her I'd call the Traumatic Brain Injury specialist who works for the Mesa School District and see about checking out the moderately disabled classroom, but I don't really think it's the thing for Mia. Krys and Mia's speech therapist don't think I should even check it out, but I told them that at Mia's IEP meeting at the end of the year, I don't want anyone to say, "Well, you didn't even take a look at it" and give themselves an out. I want to look at it, even though I doubt it will be a place I want to put Mia. I would much rather her be the lowest-performing kid in her class, because then she can look at the other kids and see what they're doing and try to model it. Last week her horse therapist put her in a "regular" wheelchair just to see what Mia would do. Mia immediately grabbed the wheel and began rolling it forward (it was in a narrow hallway and someone was steering without pushing forward, so she didn't go in a circle, as she would if she just used her right hand, which she did). Mia knew how to operate a wheelchair because she was in a class with kids in wheelchairs the past two years and she watched them. So why can't we have her in a class where the other kids are learning, and she can learn from them?

It gets back to my suspicions about the motives people do things. I've written about this before, but it's still pertinent. I wonder exactly why Ms. First-Year wants to put Mia in the other class. If she's selfish, it's because Mia is a lot more work than she anticipated and she just wants to get rid of her. I think that's part of it, because she does seem to be in over her head just a little, which is certainly normal for a first-year teacher (I know it was true for me). It's frustrating thinking that you can go into a class with a curriculum all set and then have all sorts of circumstances come up that thwarts you, but that's what teaching is. If Ms. First-Year doesn't figure that out soon, she's in for some trouble down the road. Another reason could be that she wants us, Mia's parents, to feel better. I don't know if parents desperately want their kids to be "top of the class" even if the class isn't anything special, but we're not like that. We want our kids to be in the best learning environment. If that means she's further behind the kids but the potential to learn is better, so be it. I don't think she's suggesting it for Mia's benefit, even if she might try to convince us it is. Mia is perfectly happy in the class, and she is definitely learning. Yes, it's incredibly slow, but that's the way it is with Mia. If she has to stay in that class for a few years, it won't bother her at all. And she'll learn what she needs to. Krys is of the opinion that the kids in the moderately disabled class are the ones who are "stuck" (for lack of a better word) at a certain developmental stage and will never progress. That's not true of Mia - even though her progress is very slow, she does progress. So I'm not sure why Ms. First-Year suggested it. I suspect it's because she just doesn't know what to do with Mia. Which is odd, because in the first part of the meeting, she was telling us what she's been doing with Mia, and it seems to work. I guess she just feels like dealing with Mia is taking away from dealing with the rest of the class, but she didn't say that. Nor should it be true, based on the fact that she has three aides.

So we're heartened by how well Mia is doing in school, and we're hoping she continues to do better. I'm probably going to go check out the other class, but I'm also going to let the TBI specialist that I don't think it's that great an idea. We'll see. I think Ms. First-Year is doing a fairly decent job, even though she has room for improvement. If she can realize that things are a tad bit different when you're the teacher and not the student, she should be fine. We'll see if she can step up. According to her, Mia has!

Monday, January 11, 2010

Mia's a big-time reader!

Krys has been working with Mia to teach her to read, even though it's a hard slog. She memorizes books quickly enough, especially if she really likes them, but that's not the same as reading, is it? But Krys is still trying!

Recently she's been getting better at it. Last week Krys was reading The Golden Egg Book to her, and she was pausing to work through some words with her. Mia read, without help, the words "hill," "up," and "big." Krys tells her to sound out the letters and then put them together. Mia is getting very good at doing it herself. Because she RULES!!!!!

We'd really like her to be able to read, because that will help her in the real world quite a bit. I have no idea if she'll ever be able to walk on her own, but if she can read, she can do a lot more in life. That would be nice.

Friday, January 08, 2010

Sassy girl!

I think it is a universal law that girls who are 10 and younger kind of have to be sassy and adorable. It's just how they roll!

Norah is, of course, no exception. Last night I mentioned that I had to take the Christmas tree down (which I did today!). She asked, "Why do you have to do that?" I told her that Christmas was two weeks ago, it's not coming around for a while, and the tree is taking up a lot of space. After that, she said, "Why are you telling me that?" What? You just asked me! Why I oughta ...

The funniest thing was the way she was standing when she retorted. I managed to get a picture in a re-enactment. This is, I promise, about two minutes after she said it, and she was standing exactly like this:

I kid you not, she was standing with arms akimbo, wearing an apron. She got the apron for Christmas and now she loves to wear it while she helps me make dinner. Because she's awesome.

I also forgot to post a couple of pictures from a few weeks ago. She and Mia were watching television one evening (it was a Friday and Krys was working somewhat late) and ... Norah fell asleep on the floor in front of the television:

Maybe being sassy so much just plumb wore her out!

Saturday, January 02, 2010

Here, for your consideration, many videos of the girls (and the parents of the girls) at Christmas

Yes, I've been neglectful. Last weekend was busy, and then this week I was home with the children all by myself, which took up a bit of my time. I still could have done this, but I kept forgetting. Just be glad I didn't write about the week before Christmas, when all three women in the house decided to be sick! (Though not at the same time, which made it a bit easier.) But now I have some time (it takes forever for these to upload to YouTube), so here are the kids opening their Christmas presents! Just ignore the fat man who shows up in one of them. He's a tool!

I know it's a lot. Sorry, but that's the way the computer splits them up. You can pick and choose, though!

I hope everyone had a great Christmas and New Year or whatever else you might celebrate. The kids are back at school, and I'm happy. Man, they're a handful when they're home for so many days in a row! Phew!