The Daughter Chronicles

Friday, October 31, 2014

Whenever Mia gets busy, it's never good news

Poor Mia. I decided to set up a bunch of doctor appointments in October for her, and she also had her parent-teacher conference. So she's been running around getting looked at, poked and prodded, having no fun whatsoever. Here's a run-down.

First, she went to see her neurologist. He didn't say much, but he did like that we have almost weaned her completely off of her bad seizure medication. The stuff she had been taking, valproic acid, was fine for her seizures but made her bones more brittle, so combining it with someone who doesn't walk and bear weight and all those other things that build up bone strength wasn't a good idea. Over the past six months or so, we've gotten her off the valproic acid and onto Lamictal, which seems to working perfectly fine. It's been months since she had a seizure, at least the seizures we used to see (at school, they claim she's had one or two, but the way they describe them makes them sound like they might be times when Mia is just spacing out a bit). So that was nice. I totally forgot to ask the neurologist about her latest tic - she twists her head to the side rather violently, and we're not sure if it's a new kind of seizure or not. It seems somewhat voluntary, or at least something she can control if she puts her mind to it, so I'm not that worried, but I'm still pissed that I forgot to mention it.

Then she had to get a molar pulled. Whenever Mia's teeth are loose, they rarely come out easily, because unlike other kids, Mia doesn't really bother them too much, so they take their sweet old time coming out. For the past few, we've actually taken her to the dentist to get them pulled because they were taking so long. She went to the dentist in September and he told me that it wasn't that big of a deal, but several weeks (not quite a month, but close) later, the teeth still weren't out. I took her in and he pulled one, but couldn't find the other one. Presumably it fell out, but we're not sure if she swallowed it. If she did, it didn't affect her at all. Anyway, those were the last two baby teeth she had, so now she doesn't have to worry about it anymore! Also, all four of her molars had fillings in them, but now her mouth is clean ... for a while. It's still hard to keep them clean, because flossing is a total pain in the butt.

Later in the month, we headed off to the orthopedic surgeon to discuss her back. As you might recall, Mia's scoliosis continues to get worse, and her doctor told us we really don't have any choice but surgery. Our only choice, really, is whether we want to do it right away or wait a few years, and he said there was absolutely no good reason to wait, because it would just get worse. Unfortunately, "right away" means at least April, as he's booked through March, but that works a little, because the recovery period is so long that we thought she'd have to miss a good chunk of school. If we get it done in May, she won't miss too much school or possibly none at all, if he thinks it's okay to wait until Memorial Day, which is when she gets out of school. We shall see. We're still nervous, of course, because it's surgery, but that's the way it is, I guess.

Finally, she went to see her physiatrist, who also didn't have too much to say. She's more worried about her wrist, as it's still bent too much and her splint isn't helping as much as we'd like. I put the splint on her almost every day (I know it should be every day, but sometimes I forget), but I only do it when she gets home, so she only wears it for a few hours. I used to have her wear it to school, but they would take it off sometimes and not put it back on, which defeats the purpose. I'm going to start again and hope it's better this time, because she really ought to wear it for six hours or so a day.

Her last appointment of the month was today, with a pulmonologist. The orthopedic surgeon sent her there as part of the preparation for her back surgery, as they need to figure out how much help she'll need breathing in the post-operative phase. Mia has always been healthy (with the exception, obviously, of brain-injury-related stuff), and her breathing is perfectly fine, so the doctor didn't think she's have any issues after the surgery. So she's cleared for surgery, and I'll have to contact the office to set up it up.

She also had her parent-teacher conference, which was ... okay, I guess. I noted the last time I posted (yes, two months ago - I apologize!) that Mia had been acting poorly at school, and it hasn't gotten much better. Her aide decided she was too much to handle, so they're now looking for a new aide. In the meantime, while they still have aides for her, she doesn't have an aide solely devoted to her, which means she hasn't really developed a relationship with any of the aides and is therefore perfectly willing to be mean to them. They finally decided to put on a mitt we bought - it's like a boxing glove, except far more comfortable, and it's designed to keep kids from pinching anyone. They didn't want to put it on her because state law doesn't want to "restrict" children, and they have to jump through some legal hoops to allow it. Yes, we bought it and told them it was okay to use, but that wasn't enough. They told me they had to amend her IEP, which is fine, but they didn't do it until after the parent-teacher conference. Now, I thought they would need more of the IEP team to sign off on it, but it was just her teacher and the principal (and me, of course), and in the end, I didn't even have to sign the amendment. So they waited two months or so when the teacher could have written up an amendment in five minutes. I love bureaucracies!

I'm not terribly sympathetic to the aides and teachers at her school anymore, though. I know it hurts when Mia grabs and pinches, but I've told them how to deal with her and gave them the tools to deal with her, but they're not listening. I suspect that they're ignoring her a bit too much - probably not for long, but enough that Mia gets pissed off. That's when she's meanest - she still gets upset if Mommy and Daddy aren't paying attention to her. If they don't have a one-on-one aide, the other aides have to deal with other kids as well, and Mia doesn't understand that, and she lashes out. She needs someone next to her all the time, because then that person can be right on her if she tries to be mean to anyone. I get that they're looking for a new aide, but that's not my problem. I'm a bit disappointed with her school this year, because they've been very good with Mia for several years now, and in this final year, they seem a bit more disorganized. The principal told me today that they offered the job to someone, and they're processing her paperwork (working at a school means there's a TON of paperwork), so maybe Mia will have a new aide soon. If she does, I'll have to talk to her before she begins dealing with Mia and let her know what's what. Mia isn't really that difficult to deal with, unless you're not paying attention to her. I know, shocking.

So that's her busy month. The gears grind slowly, but it's always nice to get some progress with her health and with her schooling. It would be nice if we didn't have to go through all of this, but that's the way it is. If she weren't a special needs kid, I'm sure we'd have to deal with other, more "normal" stuff!

Sunday, August 31, 2014

Various August items

August is usually a busy month, as the kids go back to school, but it seems unusually busy this month, so whenever I want to sit down and write about the kids, something else comes up. But now it's the last day of the month, so I'm taking time to write about them!

Item! It's always fun to do bad news first, so of course Mia is having medical issues. Her scoliosis hasn't stabilized, and has in fact gotten a lot worse, since we started putting her in her brace. The surgeon warned us it might, but it's still discouraging. He left the state and we got a new surgeon, who saw her, took an X-ray, and immediately began making plans for surgery. I have no idea why it's progressing so rapidly - it took years to get to the point where the surgeon thought a back brace would be a good idea, and then about 6-7 months from there to SURGERY!!!! We have an appointment in October to sort out when we're going to do it, but it seems to be getting worse, so I'm going to call this week and ask them if they think she should come in for another X-ray. Surgery is awesome, especially back surgery where they have to work on the spinal column, so I'm sure this won't cause any anxiety in the house at all. Sheesh.

Item! Mia started sixth grade this year. Careful readers might note that she started sixth grade last year, and they'd be right. We're in no hurry with Mia, as her curriculum is largely dictated by an IEP, so we thought it might be a good idea to have her repeat sixth grade. She was 11 when this school year started (she turned 12 yesterday), and we thought that socially, that might be a bit young for seventh grade. Most kids turn 13 at some point in seventh grade, so we didn't think it would be a big deal. The cut-off date for school around here is 1 September, so Mia was always about as young as you could get in any particular grade. She doesn't care if she's in her school another year, and they were perfectly happy to have her back.

Item! Unfortunately, her aide from the past two years got a better job (meaning: better benefits), so she took off. Mia has a new aide, who of course has to learn how to handle Mia. Mia seems to be better behaved this year than the end of last year, but she's still being a jerk too often. A few weeks ago, the aide stopped paying attention to her and Mia tried to stab her hand with a pencil. I told her that if she stops paying attention to Mia, she needs to get away from her, because Mia likes all the attention! She thought Mia was angry at her specifically, but I disabused her of that notion - Mia might stab me with a pencil if I stopped paying attention to her. Since then, I think Mia has been better behaved, but that's still annoying. It's just so hard to punish her because she forgets what she does so quickly that she doesn't really know why she's being punished.

Item! Norah, naturally, is doing well in fourth grade. She's still trying to figure out her teacher - she moved up from second grade, so a lot of kids in Norah's grade had her two years ago and love her, but Norah didn't, so she's still trying to figure her out. Norah is ridiculously busy with extra-curricular activities, which we're trying to monitor closely so she doesn't get burned out. She really likes them, and we don't over-burden her, I don't think, but we're still trying to make sure she doesn't go crazy. On Monday, she has art class after school. She's been taking tennis on Mondays and Wednesdays, but I'm not sure if that's just a summer thing - I have to find out after this session ends, which should be in a week. She had Girl Scouts every first and third Tuesday of the month. She decided to join the school's orchestra, which practices before school on Tuesdays and Thursdays. I thought it would be a good idea for her to learn a language, and we decided on Latin, so she's getting tutored in that on Fridays. On Saturdays she has karate. She ran for student council and didn't win, which I think might have been a good thing. So yeah, she's busy. One reason we don't mind her doing all this is because we're not making her compete in anything, which I know eats up time. She does these things for an hour or two a week, and that's it. The second reason we don't mind is that she doesn't have anyone in the neighborhood to play with - our neighbors either don't have children or they're fairly anti-social, and in Arizona, summertime is NOT a time to play outside - so she's making friends in all these activities, which is nice. I do keep telling her that she needs to let us know if she thinks it's too much to handle, but so far she's fine.

That's about it with the kids. Things are humming along, with some bumps along the way - Norah is still a bit too sensitive about things, although I'd rather she be sensitive than not - and we're hoping that Mia's health improves and that Norah continues to be awesome. I don't think we'll have to worry about either of them not being awesome, though!

Wednesday, July 02, 2014

Norah's art!

At Norah's summer program, they have two-week blocks during which they focus on certain areas. Right now it's science, but before that, it was art. They visited three different museums, which Norah liked, and they also created a bunch of art. I figured I would display it!



They had to do a "surreal" piece, so they cut pictures out of magazines and then, I assume, randomly placed them on the paper. Norah thought the image of a lady doing yoga getting menaced by a tiny lion was rather funny. I can't say I disagree!



This is on special paper that you can scratch with a paper clip or any sharp object and create a picture that way. It's much more tactile in real life, but you get the idea, I hope.



Norah dug pointillism, apparently, and almost as importantly, she remembered that it was called "pointillism." That impressed me, I'll tell you that much. Not as much as her doing this small piece in pointillist fashion, but still.



I'm not sure if this was an assignment, but the way she talked about it, I think it was. They were supposed to take something and put it "out of its comfort zone," so Norah drew Minnie Mouse buying a punk outfit. According to her, a "punk" outfit means spikes on the bow that Minnie wears (which I LOVE) and a shirt that reads "A Punk." Well, of course it does. I mentioned that Minnie scared the crap out of me, because the way she colored above her smile makes it look like Minnie has giant, sharp teeth, which she didn't see at all. When Krys got home, she thought the same thing I did. Norah forgot that Minnie has an area around her mouth and eyes that is colored white/tan, so we get Scary Minnie. I think it makes her look even more like a punk, so it fits!



This is her charcoal drawing, and it's my favorite. I know she didn't use a model for it, so the fact that she shades some of the face to indicate a light source is tremendous. She has good instincts, does Norah!

She's been doing some cool stuff with the science, too, but obviously that's less visually impressive (although she did build a cube and a pyramid out of dry spaghetti noodles and small marshmallows). I can't keep her away from learning!

Saturday, May 31, 2014

More orthodontic news!

Norah got braces this week, and she's ... well, not exactly happy about it, but not exactly unhappy about it, either. The orthodontist debated about giving her a second expander or putting braces on, and he finally decided on the latter. He's not sure how long she'll have to have them on - we're going back in six weeks to get a check-up, and I assume he'll know more then. She was pretty good, all things considered - she had to have that plastic thing that keeps your mouth open in for about 45 minutes, and it was getting pretty annoying, but she handled it like a trooper. Her lips got a bit dry, but such is life. It's funny seeing all the things that we're used to happen to someone for the first time - she's had dental examinations before, of course, but they're usually pretty quick. This was the first time she'd had to endure a lengthy invasive presence, dentally-wise, and she liked it about as much as the rest of us do. But she was perfectly fine with it. She's been brushing diligently after every meal, because she's obsessed with keeping food out of them (unlike her father, who didn't care about that crap when he had braces - I kept them clean, but not as clean as they should have been). They ached a bit for a day or so, but it seems like they've gotten better. She just has to figure out which foods are too cold to eat, because cold on metal is never good.

Krys, of course, thinks she's the only person in the world who's cute even with braces, but that's because she's Norah's mommy. She still looks like a kid in braces, which is not the best look. But she's still a cutie!





The journey to straighter teeth continues!!!!

Wednesday, May 28, 2014

Wacky third-graders are wacky

I mentioned a while back that I was teaching a class on artistic masterpieces in the third-grade classes at Norah's school. Well, since the school year is over, my responsibilities are over, and I had a grand time. The kids seemed to enjoy it, too. When I went to Norah's school on the final day of school, a bunch of kids wanted me to sign their yearbooks. One of the other parents who was there said, "You're like a rock star!" Yes, probably because my maturity level is about at the same place as a third-grader's. But that's neither here nor there!

The teachers had the kids write thank-you letters to me (this year, the kids learned how to write letters, which is charmingly quaint in the 21st century), and they were quite the hoot. Here are some of the better phrases and other such stuff in the letters:

First, this very nice child began her letter this way:


Yeah, that's my daughter. I laughed and asked her why she addresses it to "Mr. Burgas," and she said, "I was trying to be respectful!" Norah is awesome.





At the bottom of the paper, there was an owl wearing a beret and holding a paint brush. Most of the kids colored him in, but some, as you can see, went a but further.



"I'm saying one of the funnyest because my dad is the funnyest." I'm sure his dad will be happy his son didn't throw him under the bus.













Both teachers helped the kids out by giving them ideas about what to write about, and as you can see, Norah's teacher happened to mention that I was on time, which the kids ran with. Norah's teacher had a wry sense of humor, so I like to imagine she was joking when she said this, but I've learned many things about kids in the past decade, and one of them is that elementary school kids don't get sarcasm. She may have meant it, but if she didn't, the kids wouldn't have made the distinction. But hey - I was on time!



This girl always wanted to know if the artists were married, if they had any kids, and how they died. When we were in training for this job (we had to get trained, you know!), the trainer said that kids always wanted to know those things. I said it was going to be hard when every artist ever is either gay or had many affairs and they all died of syphilis, but such is life. This girl was exactly what the trainer was talking about. She was obsessed with knowing those things!



This kid is talking about Rene Magritte's "Le Mariage de Minuit", which freaked more than one kid out.



A few kids said I was loud, which I guess is a good thing? I've always been loud - you couldn't grow up in my house and expect to get a word in if you weren't loud, and I've been so ever since. So sue me. Hey, I can project! We're not supposed to express our opinions about the art or the artists, because the kids at this age tend to follow suit, but I told them that I do not like Jackson Pollock, and this kid agreed with me. I have a higher opinion of kids than a lot of people, and many of the kids loved the Pollock I showed them even though I told them I hate his art. Kids have their own brains!



I'm not sure how scared I should be! This kid is pretty cool, though, so I think I'm safe.

So that's third-graders being kooky. I could never teach elementary kids because they would drive me insane, but I do think they're awesome. I'll be back next year, and we'll see if they still like me!

Sunday, May 11, 2014

Mia's new medication

I finally got Mia in to see her physiatrist, as she's been seeing a bunch of other doctors recently and I haven't had a chance to get her to the doctor. But we saw her, and she checked out Mia's muscles. It's always the muscles!

As you might recall, Mia's muscle tone is very high, which has led to a reduction in her standing to ... well, none, really (she does a bit of it at school, but she's basically sitting in a stander that supports her butt). We have no idea how to decrease her tone, and if it lasts too long, she'll get muscle contractures and she'll never be able to stand again because her muscles will be too short. She's been taking baclofen for some years, which has helped a little, but we were wondering if she needed an increase in the dosage of the baclofen to help her out. Her doctor told us she was at the upper reaches of effectiveness for baclofen, so we didn't move that up. She thought Mia moved fairly well, and I mentioned that part of her problem was that when she was stretching, she seemed scared to move too much because she believed it might hurt her. Mia overreacts to everything, and so when you're stretching her, even if she's reasonably loose, she quickly becomes upset if she thinks you're going to stretch her just a bit more. So she reacts by pulling back even more than before, until she's almost fetal. Mia digs fetal-ness - nothing can hurt her when she's in a ball.

The doctor noticed this too, so she prescribed diazepam. Yeah, that's right - Valium. She believes that Mia's baclofen isn't able to override the reaction she has, but if she were able to relax a bit, the baclofen will help her muscles become looser and she can stretch better. Makes sense, right? Obviously, Valium has some issues, so she started her at a very low dosage - 1 milliliter three times a day. This week I'm going to increase that slowly to 2 ml, but I'm going to go slowly with it. Mia seems to be handling it pretty well so far - when she has a lot of external stimuli, there's not any difference in her behavior, but when it gets closer to bed time, you can tell that she's winding down a bit. Back when she wasn't getting enough food in her, we saw this too, because she didn't have enough energy. Now that she's getting enough food, we think it's the Valium hitting her when she doesn't have anything to distract her.

She's only had one physical therapy session since she started on the Valium, so we can't tell if it's working or not. We can always take her off of it if it doesn't, and right now it doesn't appear that she's reacting poorly to it, in terms of allergies or anything. So we'll keep trying it.

And no, I don't have enough to give it to anyone who wants it. Believe me, people have asked - jokingly, I should hope!

Friday, April 18, 2014

Eleven years goes too fast

Eleven years ago, Easter fell on the 20th of April, just like it does this year (in the West, at least; the Orthodox Church uses a different computation). How do I know that? Because eleven years ago, Good Friday fell on the 18th of April, just like it does this year. And I know that because eleven years ago on Good Friday, Mia and I were in the car accident that changed her life (and, to a lesser degree, mine and Krys's) forever.

Yes, another year has passed, and as I do every year, I take some stock in how Mia's life has progressed during the year.
As I always do, I will link to the story about her accident and some pictures of her in the hospital, in case you haven't read about it yet. Sorry, it's a bit depressing.

This year has been ... okay, I guess. Better than some, and she's making progress in a lot of areas, but in some ways, it's been really depressing. The worst aspect has been her continual problems with her muscles, which show no signs of getting any looser. We're well into the third year of her not being able to straighten her legs all the way - the last time she was able to stand and "walk" (with assistance, of course) was in July/August 2011, and then her legs tightened up and we've been dealing with that ever since. Her physical therapist doesn't do much these days except stretch her legs, and even then he can't get them to straighten out. For a while he was coming only every other week, because he wasn't sure what else he could do, but that didn't work too well, as Mia was just getting tighter every time he showed up. It's very hard for me to stretch her - he does it for an hour and she still gets very upset, and when she's home alone with me, I'm trying to get food into her (see below). It's also very, very hard to stretch her, and is pretty much a two-person job - I help out when her PT is here. Mia doesn't want to lie straight, so when we put her on her back, her legs move to the left to relieve the pressure on her hips. If we straighten her legs, her torso moves to the right to put her in the same position. So when her PT is stretching her, I have to sit next to her and keep her torso straight while he keeps her legs straight. She's not happy about that at all, I'll tell you that much. She struggles mightily against it, and over the past few years, it's become harder and harder for her to relax.
She used to be able to compose herself and her PT could stretch her a bit more, but these days, her muscles are constantly firing, even when she's lying still. He holds her legs down, but unlike in years past, he can't push too hard on them, because her muscles are pushing against him so hard. That's part of why her legs won't straighten out. It's very frustrating.

I haven't gone to see her physical therapy at school recently, mainly because I've been doing other things, but I know they're trying to get her in a stander and get her elevated a little. I don't know how they're doing it, as she doesn't want to straighten her legs, but that's why I want to go to school and check things out. We've been leaving off her orthotic devices for her legs recently, because she's been wearing her back brace constantly. I put her AFOs (her ankle-foot orthotics) on for one day, and she seemed very uncomfortable. The problem, as I noted above, is that she doesn't - and can't - stay straight. If her torso is fixed in her back brace, she is very uncomfortable if her legs are fixed as well. She's straining against the orthotic devices constantly, and that can lead to a lot of fatigue (naturally) and even screw up her bones or muscles, because she won't - and can't - stop doing it. We originally got the AFOs for two reasons - she was pointing her feet constantly, which screws up the tendons in your feet, and the AFOs keep her feet bent at a 90-degree angle to her legs; and she was scissoring her legs when she walked, and the AFOs kept that from happening. Her feet are no longer pointing, and she doesn't walk at all, so we're giving her a break from the AFOs while we work on her back, which is more important at this time. It's all about choices!

So her PT is going poorly. I wrote about her leg breaking in December, which was just another setback. She's still getting physical therapy from a variety of people, but I don't know how well it's working. I think it's maintaining her level of movement, which at this point is all we can hope for. As I wrote above, when she eased back on PT for a little, she got measurably worse, so whatever we're doing for her right now is just keeping her from getting worse, but it's not really making her any better. Her PT doesn't know if anything will ever help her, but we'll keep trying.
I just found out recently that her orthopedic surgeon has left Phoenix Children's Hospital, so we'll have to find a new one. That's fine - new blood can be interesting - and I'll be interested to see if a different doctor has any new advice. Her orthopedic surgeon is a good doctor, and he always gave us good advice, so I'm wondering if a new doctor will have a new perspective. We shall see.

Another big problem that has come up recently is her age. She's 11, and we're pretty confident she's heading into puberty, and that's not good for anyone! Recently she's been very feisty, acting out more at school and even trying to pinch me more than she used to, which is very unusual. This past week she drew blood from one of the kids in her class, which is not a good thing. We've tried for years to get her to stop pinching and scratching, with varying degrees of success. I think the kids in her class tend to forget that she doesn't tell people to get away from her if she doesn't want you around, she just lashes out with her right claw. I told her aide this week that even though we can tell Mia to be nice as often as we can, they also need to make sure the kids aren't crowding her too much, because she'll start pinching. Her behavior is unusual only in its intensity, and we think it has to be puberty, because nothing much has changed in her environment. I've called a doctor at Phoenix Children's Hospital who runs an adolescent transition clinic for special needs kids, as we're trying to arrest puberty as much as we can. Norah asked why kids go through puberty (she still doesn't want to know the details), and I told her it's to they can have children. As that's not really an option for Mia, why should she have to go through all the crap that goes along with it? We know we can stop/slow some of the more annoying aspects of puberty, so we're hoping that's the way to go. I, for one, do not want to change the diapers of a menstruating girl. I don't think anyone can blame me.

All is not gloomy, though. Her weight has increased - the last time she was officially weighed, she was at 57 pounds, which is the highest she's ever been - and that means her energy as increased. She's doing well with the formula she's on, and we're trying to get more water in her so she doesn't get dehydrated. She's more active at school and she doesn't have to go to bed as early as she used to because she's not exhausted, even with the back brace on all day. At school, they're very happy with her progress - she's working harder and seems to be doing better with the work. She still has trouble formulating full sentences, but she's getting better at it, especially when everyone reminds her that she has to. They were very happy with her progress at her annual IEP meeting. We also decided to keep her in 6th grade for another year. She will be 11 when the new school year starts, and won't turn 12 until about three weeks into the school year, so she'll be very young for 7th grade. She will still be taught according to her IEP, which has nothing to do with what the rest of the kids are learning, so the only reason to send her to the next grade would be because socially, she's ready to go. We thought she was a bit young to enter 7th grade, where most kids are already 12 and some even turn 13 during the year, so we asked if she could stay at her school for one more year. So that will be nice - she can grow up a little before moving on. At least that's the theory!

It's been a somewhat eventful year in other areas not specifically concerned with Mia's health. We got a new van, as she was dangerously close to outgrowing the old one. It has a nice wheelchair ramp and a large area for the chair in the back, and it's pretty neat. She got a new chair for the house, which is larger than the one she had for years, and she digs it quite a lot. She got a new speech therapist - the third since her long-time therapist moved - and she likes the new one a lot. As always, we're keeping our fingers crossed that this one hangs around for a while - for some reason, speech therapists tend to switch jobs a lot, while her PT (who's been with her since the very beginning) and her OT (who's been her therapist since 2005) keep keeping on. She's doing quite well with OT and speech, which offsets the struggles she's having with PT a bit. I mentioned last year that she got a new lawyer (but kept the same paralegal, which helped), and that transition went smoothly. The court has some new guidelines to follow about keeping track of her expenses, which is annoying but nothing too terrible. One thing that bugged me recently is finding out that she's slowly running out of money. We want the money she received in her settlement to last for her entire life, but that's not going to happen unless we change the way we use it. It gains about 4-5% per annum, which isn't a bad rate of return for a conservative portfolio, but we take out about 7-8% per annum, which makes it unsustainable, obviously.
She's safe for a while, and we're probably not going to take as much out when she reaches adulthood (maybe we will, but we don't anticipate doing so), so we're hoping we can lower the percentage we take out, but who knows. We really can't cut any of the expenses we accrue, because they're all things that are essential for a kid like Mia, and they're too expensive for us on our own - her diaper bill, for instance, runs quite high, and most parents of 11-year-olds don't have to worry about that expense. This past year was a bit extreme, as we took a chunk of money out for the new van, but it's still frustrating that her principle is slowly diminishing. Nothing to worry about right now, but something we're already addressing so it doesn't become a big problem.

This has been a pretty decent year, all things considered. Yes, she's getting bigger and harder to move, and her physical state isn't as good as it has been in the past, but she's doing better in school, she's interacting more with people around her (although, as I noted above, it's not always positively), and she's gaining weight and therefore she has more energy (or course, we don't want her to gain too much weight because she doesn't do any exercise and can't burn it off), which is very neat. Her new anti-seizure medication - Lamictal - seems to be working pretty well, and we're slowly weaning her off the stuff that makes her bones brittle. Fewer seizures means she's sleeping better, which is always a good thing.

As always, it's tough raising a kid like Mia, but it's also very rewarding when things go well. We don't have a lot of confidence that her muscular problems will ever get resolved (short of replacing her muscles and tendons with bionic parts and turning her into Jaime Sommers), but we're very happy that she's working harder in school and she seems to be enjoying herself more. You take the good with the bad, I guess.

In case you've missed some of the other annual updates, here they are: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, and 2013. Man, I can't believe how much she's grown. Who could have predicted that?

Thanks for reading, as always, and I know I've been slacking a lot recently in writing. I will try to update more often!

Wednesday, February 26, 2014

The cyborg-ization of Mia continues apace!

Back in December, Mia saw her orthotic surgeon and he didn't like the cut of her jib. By which I mean, he thought her back was bending in a way that was not completely copacetic. I wrote about this two posts down (man, I really need to update the blog more often, don't I?), but it's useful to remember. He was concerned about her scoliosis, so we made an appointment with the orthotic guy who crafted her AFOs (for her legs) and her wrist splint (for her wrist). In January, we headed downtown, where he put a body sock on her, marked it up with all sorts of lines to indicate where things would be, and sent me away. A few weeks later, Mia's brace was ready!

The brace won't fix her scoliosis, according to her doctor. It can arrest the bendiness, but it's not going to straighten her spine. We just hope that it won't get worse at this point, so for now, we'll see what happens with the brace. It's very hard to put on - as Krys has pointed out, it's much like a corset, but I would bet the materials used for it are much tougher, so wrapping it around her, even before I start tightening it, is a chore. Once I get it on her, I need to make sure it's down far enough. The orthotic guy cut a hole in it so that her G-tube button can be accessed, and the hole needs to be in the right place so the button is exposed. This is harder than it sounds. Mia, as you might recall, does not like straightening her legs even a little bit, and the brace comes down right to where her legs bend. To get it a bit lower, I need to lay Mia on her side and tug down on the brace while trying to keep her body immobile. Yeah, it's hard. It tickles Mia, though, so at least she doesn't whine about it. Even though I get it as far down as I can, the button is still very close to the bottom edge of the hole in the brace, so I have to call the orthotic guy and ask if he could make the hole bigger, because if the brace rides up at all (and given Mia's predilection for rocking back and forth in her chair, it's a strong likelihood it will), the edge of the hole will push against her button. It's a thin layer of rubber, so it will either pull the button completely out (which is a possibility but unlikely) or it will get between the button and her skin and rub, causing a lot of irritation. No fun at all!

Mia has been wearing the brace for a few weeks, and she seems perfectly fine with it. It forces her to sit up straight, which makes the people at school happy, because when they're hooking up her G-tube to her button, she can't bend over and make it difficult for them. Obviously, she can't put her head down on her tray, although recently that hasn't been a problem - she's much more energetic than she has been in the past. Today was the first day I put her AFOs back on - the orthotic guy told me to give her about a week to get used to the brace - so she's looking more like a cyborg today than ever. But if it keeps her back from getting more twisted, that's the way it has to be!

She also got weighed at the doctor's office yesterday, and she's up to 53 pounds, which is a 3-pound gain since October. So that's nice.

Anyway, here are pictures of her fancy new brace:







Those last two pictures show the hole through which her G-tube runs pretty well. With the buckle there, it might be dicey to cut the hole bigger, but I'm sure it can be done!

Next in the cyborg-ization of Mia? I'm trying to get a fully-functioning exoskeleton that would allow her to walk, but I'm not sure if that's feasible.

Wednesday, January 29, 2014

Art for the masses!

I decided to volunteer at Norah's school in the "Art Masterpiece" tutorials that they do. Across Phoenix, school districts have for years participated in "Music Masterpiece" and "Art Masterpiece" classes that the parents teach. The parents are trained and then they go into classes every other week for 20 minutes and discuss a piece of music or a work of art. They can talk about whatever they want about the art - they can focus on the artist and his/her world, they can talk about color, they can talk about the school of art in which the painting fits, or they can talk about the techniques the artist used. We leave the print we have in the classroom until the next session so that the kids can check it out on their own time. I don't know what they do with the music stuff, because it's hard to leave that lying around.

Norah has been checking out music and art since kindergarten, of course, but I was never involved. Earlier this school year, however, the principal mentioned that they were having trouble rounding up volunteers for the Art Masterpiece portion (the music goes in the fall, the art in the spring), so I said I'd give it a go. In November I went to the training sessions - three two-hour sessions over three weeks - and last Friday, I went into the classroom for the first time. Originally, I volunteered for the third-grade class that Norah is NOT in - they had a volunteer for that - but over the course of the past month or so, apparently the parent they had for Norah's class couldn't do it, so I told them I could do both classes. Fun!

I went to the other class first. The print I was talking about was Pieter Bruegel's "The Harvesters' Meal" from the mid-1500s. I began by telling the kids a bit about the 16th century and humanism, which I'm sure went right over their heads. Oh well. I talked a little about Bruegel, but I don't want to go into the artists' lives too much. When I was talking to one of the admins in the office who's done this before, she said the kids always want to know if the artists were married and how they died. I said that since they all had horrible personal lives and they all died of syphilis, this would be a problem. So I tried to deflect them as much as possible - I honestly couldn't find out how Bruegel died, so that was that. One girl, I swear, was totally trolling me - she wanted to know how he died, how many kids he had, and how many pets he had. I did tell her he had two sons, but I didn't know how many more kids he had, and I told her it didn't really matter how many pets he had. I know plenty of the kids in there, so I had some fun with them. I hope they learned a little bit, at least.

Norah's class got Renoir's "At the Concert," so I spoke a bit about Impressionism and what Renoir and painters of his ilk tried to do with their paintings. I also know a lot of kids in Norah's class, so I felt pretty comfortable with them, too. Surprisingly, they didn't care how Renoir died, which was nice. I talked to them about where they thought the ladies in the painting were (this was before I told them the title), and one girl answered that they were on a wagon, which I thought was a bit odd. We talked about texture and how Renoir tried to make that evident in the painting. They were fun - I don't know how much they absorbed, but I figure if they get a bit of it, that's probably good enough.

I enjoyed it quite a bit. I still love teaching, and at Norah's school, the kids are a bit more respectful than at other schools, plus the teachers have already made it clear that they need to shut up and listen, so I don't have to do the hard part of getting them to behave. I made them laugh a couple of times because I said "crappy," which I probably shouldn't have, but oh well. I freaked one girl out because I said "Hell" - as in, painters prior to Bruegel's era tended to paint stuff depicting Heaven or Hell - but if that freaks kids out, they need to toughen up a bit. Some of the kids spoke out of turn without raising their hands, but it wasn't too big a deal. The first teacher was impressed with the volume of my voice - I can get loud when I want to! I didn't yell, but I did speak loudly - that's just the way I am, man! Overall, it was fun. I'll have to see if they learn much over the course of 10 weeks (which is how long the program lasts).

Next up: van Gogh and Cezanne! Will I talk about van Gogh's ear (which, I'm sure, will be the only thing they remember)? We shall see!

Sunday, December 22, 2013

Mia's medical mayhem!

So just when I was going to sit down and write about Mia's follow-up visit to her orthopedic surgeon, something else happened. It's never dull with Mia, unfortunately!

After Mia's hip surgeries, she had to see the orthopedic surgeon every so often for X-rays so he could make sure everything was well. Last October, they told me I could wait a year to see him, but when I called for an appointment in November, they told me I should have been back in six months. THEY LIE!!!! Oh well. So a few weeks ago, I took her on her standard pilgrimage to Phoenix Children's Hospital to see the doctor. We have been concerned about her high muscle tone and what we should do moving forward, because we want to make sure that she's still able to stretch her legs even if she doesn't stand that often. If you don't stretch, your muscles get shorter and eventually, you can't stretch them even if you want to. As much as Mia sits all day, we still want her to be able to stand in a stander every once in a while, but it's still very hard to stretch her legs and we wanted the doctor to take a look at that.

He took X-rays of her legs, but when he came in to see her, he thought it would be a good idea to X-ray her back, too. Everyone who works with her has been concerned about scoliosis for some time, so we've been keeping an eye on it. It had been a while since her back had been X-rayed, though, so the doctor sent her back to the imaging room! It turns out he was wise to do so - her back was at 45 degrees, which I guess is bad? It sounds bad, doesn't it? (Hey, it's called the Cobb angle! What do you know?) He wasn't as concerned with her leg muscles, because a lot of that comes from the scoliosis. I do need to call her physiatrist and talk to her about her Baclofen amount - that's the medication that relaxes her muscles. Her physiatrist has talked about a Baclofen pump, which releases it steadily into her body, but I'm not sure if she weighs enough for one. Her orthopedic surgeon also mentioned that the pump is as big as a hockey puck and it's attached to her gut, so it actually makes scoliosis worse because kids sit oddly when they have one. So I'll have to ask the physiatrist about increasing her dosage and seeing if that makes a difference. The orthopedic surgeon also mentioned that her neurosurgeon (she has a LOT of doctors!) could perform a rhizotomy, which would destroy some of the nerve roots to lessen the spasticity of her muscles. But that's something we'll have to discuss with him!

The scoliosis, though, concerned her orthopedic surgeon. He mentioned that she's too short to get rods in her back, and I'm not sure if we would do that anyway, because it sounds awful. For now, he suggested a soft back brace, which will at least slow the degradation down for a while. I've made an appointment with the guy who fashioned her AFOs and her hand splint, so in January, she'll be heading off to get more body armor. Soon she'll be Robocop and all our crime prevention problems will be solved! Until someone comes up with a way to replace bones and tendons with robotic parts, Mia is going to have issues. I also called the people who made her wheelchair, because you can modify a chair to help alleviate scoliosis. I'm not sure if they'll be able to modify this one or if she'll need a whole new chair, but we'll see. I'm sure it will be the latter, because of course it will.

All that news was annoying enough. Then, this past Friday, I compounded the problem. I was getting Mia ready for school and I sat her up in bed to brush her hair. When I do that, she always pulls her legs up because it's more comfortable (that whole stretching thing, you know). This makes her unstable, as you might imagine, and it's always hard to brush her hair when she's swaying so much (even though she holds onto the railing on the side of the bed). On this morning, she was more unstable than usual, and so I did something stupid: I put my hand on her left thigh, right above her knee, and pushed down a little to stretch her leg. I've done it before, and usually there's no problem. However, this time she screeched really loudly, and I knew something was wrong. She calmed down, and I figured it was just an unusually tight muscle spasm and she'd be fine. I got her to school and told the nurse that she wasn't feeling great. The nurse called before they sent her home and said she was still screeching when they got her out of her chair and tried to change her. So when she got home, I put her in bed and let her relax. We could tell that she was still uncomfortable, but we figured we'd let her sleep on it, and if it was just an aching muscle, it might feel better in the morning.

On Saturday it wasn't much better - a little, but not much - so I took her to the emergency room at Phoenix Children's (it's not the closest hospital, but since they have all her records, we take her there if time isn't a big constraint). They X-rayed her and found ... a broken tibia! Yay! Yes, I actually broke the top of her shinbone, at the back of her knee. As you might imagine, I'm feeling quite awful right now. I mentioned when she went to the endocrinologist that he was surprised she hadn't fractured a bone yet because her bone density was so low, and of course, a few months later, she fractures a bone. We've been working on getting her off the medication that caused her low density, but it hasn't been long enough for her bones to recover. So she fractured a bone. Oh joy.

They put a cast on it and told me that she needs to see the orthopedic doctor in a week, because it might be healed by then. Or it might take another week. Either way, she's still unhappy, but at least her knee is immobilized and presumably it's healing. The good news is, of course, that it's Christmas break, so she's not going back to school until the 6th of January. That means she can just lie around in bed or sit in her chair, and we don't have to move her too much. She can chillax and heal without worrying about going to school and moving around too much. I hope that by Monday the 6th she's either out of her cast or almost ready to get out of it. That would be nice.

Logically, I know that it was probably a matter of time before she had a fracture. That doesn't relieve my guilt at all. I feel terrible, even though I had done what I did many times before and I didn't push her leg very hard - I know that her leg doesn't stretch very well, so I don't push down on it very hard at all. I just wanted to stabilize her a bit while I brushed her hair, and she got unlucky (I know, Mia's unlucky - how shocking). I'm very upset about it.

We're getting her onto different medication that won't mess up her bones as much, and we're hoping that over the next year or so her bones can get stronger (bones don't get stronger forever, so we're hoping they get stronger quickly in the next year before they slowly start to get weaker). In the meantime, we're hoping this fracture heals quickly and well.

Man, I feel bad for Mia. She's too awesome to have to deal with this!