Various updates about Mia
In the past couple of weeks, Mia has done a lot. She went to three doctors' appointments and had an IEP meeting. It's never dull with Mia!
First, two weeks ago, she got a new button for her G-tube. The doctor likes to switch it out every once in a while to make sure the old one doesn't get gunky. It was quick and easy - the entire appointment took less than five minutes - but I don't think it was too wise, because it seems to have reminded Mia that she has something stuck in her stomach. She had been leaving it alone, but when she got the new one in, she poked at it a bit more than she had been doing. Luckily, she seems to have gotten over that phase, and she's back to leaving it alone. We're supposed to change it every few months, and I hope she gets used to the change so she doesn't poke at the new one every time. It's not that hard to do it - I think next time, I'll be doing it, and I hope I do it correctly. One does have to stick something into a hole in her skin and into an organ, after all. It doesn't look that difficult, but I've never actually done it before.
A few days later, she went to the physiatrist. She's been checking Mia's muscles and trying to figure out how to stretch her, because Mia is still having difficulty with that. The doctor decided to put in an order for Botox, but it might take a few months for the insurance company to approve it. She also said it's hard to target the correct muscles, because while Mia's muscle tone is high, she also reacts very violently to attempts to stretch her, pulling her legs and arms in hard, so it appears her tone is higher than it really is. She can relax, but her defense mechanisms tend to overwhelm any relaxation instincts. We do know that her left hip and upper leg are very high in tone, so the doctor is going to target those, but I don't know if she needs any other places done. We have a while to wait, of course, because of the wait for approval.
This past Monday Mia went to the gastroenterologist to check on her weight and her progress. The doctor was very happy with her progress - she's up to 50/51 pounds, which is about 6 pounds of weight gain in two months. The doctor told me to get her up to 55 pounds, which is a good weight for her. She's not eating very much solid food, but that's to be expected. Her weight gain has meant that she's much more energetic, much less whiny in therapy (although she still doesn't like it), and she seems to be trying harder in school (because she has more energy, of course). So while she's still having trouble on the physical front, at least she's gaining weight and feeling better. That's nice.
Then, on Friday, we went to her IEP meeting. As long-time readers of the blog (I'm sure you're out there!) know, her annual Individualized Education Program meeting is usually not that bad, even though we've had some annoyances in the past. This year, I was actually prepared for it to suck, because I spoke to the Traumatic Brain Injury specialist for Mesa School District before the meeting. She told me that she had suspicions that since January (when Mia started gaining weight and being more rambunctious at school) Mia hasn't been getting the attention she needs, because the teacher isn't prepared for her. Mia is in a self-contained classroom most of the day, and she is, unfortunately, the highest-functioning kid in there. The TBI specialist told me that reports she was getting from one of Mia's teachers - the itinerant one, who comes to her class a few times a week to work with Mia - was fearful that the special ed. teacher wasn't following up on what they were working on. It's very easy to underestimate Mia, so we were wondering if that had something to do with it. So I was prepared for it to be slightly more contentious than usual.
Luckily, we didn't have to worry. The TBI specialist and the itinerant teacher were, it seems, wrong - the special ed. teacher has been working fairly hard with Mia, even though she has to deal with a bunch of other kids who function at a lower level than Mia does. The teacher - who just started in January and graduated only last May - did say she felt a bit overwhelmed, but she allayed their fears very nicely and showed that she is trying very hard. The meeting got long because we're not sure what's going to happen to Mia next year. She's moving up a grade, so she'll get a new teacher (who will be her seventh in six years of elementary school), and no one knows who that will be. Mesa is committed to mainstreaming the special ed. kids as much as they can, but they've tried that this year with Mia and it doesn't work too well. She's still going to need the majority of her schooling in a self-contained classroom, but we really want her to be in a class where she's not the highest-functioning student. She did really well the past two years because she had a bunch of kids who were only slightly above her in terms of abilities, so she had lots of good role models. We don't know if she'll have that next year; in fact, they don't even know who the teachers will be. This is not an unusual situation, as anyone who's ever worked in a school can tell you, but that doesn't make it any less annoying. We all agreed that I should call the principal and ask for a meeting to determine what's going to happen next year, but even if I do meet with her, I don't know if she'll be able to give me anything concrete. We'll see.
Other than that, Mia is doing well in school, and the IEP meeting went pretty well. It was long, but not as bad as we thought it might be. The TBI specialist and itinerant teacher are very tough when it comes to Mia's education, and I was glad that they were placated by the special ed. teacher, who you could tell was a bit nervous about the whole thing. But she did a good job, and we think we hashed out some pretty good goals for Mia next year. If only we knew what kind of classroom environment she's going to have!
So that's what's been going on with Mia. She's doing quite well, and we hope she continues to improve. That would be nice.
First, two weeks ago, she got a new button for her G-tube. The doctor likes to switch it out every once in a while to make sure the old one doesn't get gunky. It was quick and easy - the entire appointment took less than five minutes - but I don't think it was too wise, because it seems to have reminded Mia that she has something stuck in her stomach. She had been leaving it alone, but when she got the new one in, she poked at it a bit more than she had been doing. Luckily, she seems to have gotten over that phase, and she's back to leaving it alone. We're supposed to change it every few months, and I hope she gets used to the change so she doesn't poke at the new one every time. It's not that hard to do it - I think next time, I'll be doing it, and I hope I do it correctly. One does have to stick something into a hole in her skin and into an organ, after all. It doesn't look that difficult, but I've never actually done it before.
A few days later, she went to the physiatrist. She's been checking Mia's muscles and trying to figure out how to stretch her, because Mia is still having difficulty with that. The doctor decided to put in an order for Botox, but it might take a few months for the insurance company to approve it. She also said it's hard to target the correct muscles, because while Mia's muscle tone is high, she also reacts very violently to attempts to stretch her, pulling her legs and arms in hard, so it appears her tone is higher than it really is. She can relax, but her defense mechanisms tend to overwhelm any relaxation instincts. We do know that her left hip and upper leg are very high in tone, so the doctor is going to target those, but I don't know if she needs any other places done. We have a while to wait, of course, because of the wait for approval.
This past Monday Mia went to the gastroenterologist to check on her weight and her progress. The doctor was very happy with her progress - she's up to 50/51 pounds, which is about 6 pounds of weight gain in two months. The doctor told me to get her up to 55 pounds, which is a good weight for her. She's not eating very much solid food, but that's to be expected. Her weight gain has meant that she's much more energetic, much less whiny in therapy (although she still doesn't like it), and she seems to be trying harder in school (because she has more energy, of course). So while she's still having trouble on the physical front, at least she's gaining weight and feeling better. That's nice.
Then, on Friday, we went to her IEP meeting. As long-time readers of the blog (I'm sure you're out there!) know, her annual Individualized Education Program meeting is usually not that bad, even though we've had some annoyances in the past. This year, I was actually prepared for it to suck, because I spoke to the Traumatic Brain Injury specialist for Mesa School District before the meeting. She told me that she had suspicions that since January (when Mia started gaining weight and being more rambunctious at school) Mia hasn't been getting the attention she needs, because the teacher isn't prepared for her. Mia is in a self-contained classroom most of the day, and she is, unfortunately, the highest-functioning kid in there. The TBI specialist told me that reports she was getting from one of Mia's teachers - the itinerant one, who comes to her class a few times a week to work with Mia - was fearful that the special ed. teacher wasn't following up on what they were working on. It's very easy to underestimate Mia, so we were wondering if that had something to do with it. So I was prepared for it to be slightly more contentious than usual.
Luckily, we didn't have to worry. The TBI specialist and the itinerant teacher were, it seems, wrong - the special ed. teacher has been working fairly hard with Mia, even though she has to deal with a bunch of other kids who function at a lower level than Mia does. The teacher - who just started in January and graduated only last May - did say she felt a bit overwhelmed, but she allayed their fears very nicely and showed that she is trying very hard. The meeting got long because we're not sure what's going to happen to Mia next year. She's moving up a grade, so she'll get a new teacher (who will be her seventh in six years of elementary school), and no one knows who that will be. Mesa is committed to mainstreaming the special ed. kids as much as they can, but they've tried that this year with Mia and it doesn't work too well. She's still going to need the majority of her schooling in a self-contained classroom, but we really want her to be in a class where she's not the highest-functioning student. She did really well the past two years because she had a bunch of kids who were only slightly above her in terms of abilities, so she had lots of good role models. We don't know if she'll have that next year; in fact, they don't even know who the teachers will be. This is not an unusual situation, as anyone who's ever worked in a school can tell you, but that doesn't make it any less annoying. We all agreed that I should call the principal and ask for a meeting to determine what's going to happen next year, but even if I do meet with her, I don't know if she'll be able to give me anything concrete. We'll see.
Other than that, Mia is doing well in school, and the IEP meeting went pretty well. It was long, but not as bad as we thought it might be. The TBI specialist and itinerant teacher are very tough when it comes to Mia's education, and I was glad that they were placated by the special ed. teacher, who you could tell was a bit nervous about the whole thing. But she did a good job, and we think we hashed out some pretty good goals for Mia next year. If only we knew what kind of classroom environment she's going to have!
So that's what's been going on with Mia. She's doing quite well, and we hope she continues to improve. That would be nice.
posted by Greg at
4:28 PM
2 Comments:
you've become so well versed in stuff I suspect you'd never thought you'd know about...
By
Roger Owen Green, at 25/3/12 7:01 PM
I know, it's weird the kinds of knowledge you pick up based on your circumstances! I mean, having kids forces you to learn all sorts of new things in the first place, and having Mia adds a whole bunch of stuff to it!
By
Greg, at 26/3/12 6:25 AM
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