Not a quinceañera to celebrate!
Today is 18 April, which means it's time for my annual post about Mia's accident and her progress over the past year. Today marks the fifteenth (!!!) anniversary of her accident, and as always, we're glad she's alive and (relatively) well, even though it's a sad day for both of us, because we both remember the date with such clarity. 
But we also know how lucky we are, because Mia is a happy and healthy kid, and she's not, you know, dead.
I mentioned last year that I wanted to post more often, and since then, I wrote on this blog ... once. About our vacation in June. As the kids get older, they settle into patterns, and not a ton of new stuff comes up, at least for Mia. Norah is dealing with junior high drama every day, but as it's junior high drama and often (but not always) as ephemeral as smoke, I don't write about it. But I will write about Mia's year, as there have been some things of note.
Of course, she went on vacation, which you can read about right below this post. We're fairly confident that she enjoyed herself, even though she wanted to watch television most of the time. But we did get her out and about a few times, and she did play in the ocean a little, so that was all right.
She went to her summer camp, which she really likes, and even though it's in Mesa and we're now living in Chandler and it's probably a good 15-20 miles away, we're still sending her there this summer, as well. They don't care where you live as long as you can pay them! It's nice for her to get out of the house, and it's so hard to figure out what to do with her, so camp is a great benefit. And, of course, the people love her because she's awesome.
She also started high school, so that's been a transition. Because of her birth date (30 August), she comes in before the cut-off date for the grade (1 September), so technically she could have started 9th grade last year, but then she would have started when she was 13, and we had already anticipated that and kept her in 6th grade for two years to get her a bit closer to her peers in age. It doesn't really matter what "grade" she's in - she has an Individualized Education Program (IEP), so she follows that for her curriculum, and she'll be in school long past her 18th birthday, so keeping her an extra year in elementary school didn't really matter, and she's not 15 and in 9th grade, which lines up perfectly well (she'll turn 18 a month or so into her "senior" year). So she started high school, which meant a new school and new teachers that we had to train! It's been a pretty smooth transition, to be honest. Her high school has a big Special Ed. program, with a lots of aides and a program in which some students come in and help out, so there are plenty of people around besides the students. When we met with the Special Ed. coordinator, we were a bit apprehensive because she told us that they don't really do one-on-one aides at the school. It's in her IEP, so legally they have to give us one, but she assured us that there are so many aides and teachers that we wouldn't have to worry about it.
We decided to give it a little while at the start of the year and if we thought she wasn't getting the attention she needed, we'd push the issue. Happily, it hasn't been an issue. We've already had her IEP meeting for the year, and we discussed that topic, but her teacher put our fears to rest, because she always has someone helping her, just not the same person all the time, but everyone has been trained in dealing with Mia. Everyone knows how to change her and get her feeding together, and the biggest thing we worry about is her behavior, because if she has a one-on-one aide, we've seen that over time, the aide feels more comfortable making sure Mia is behaving. It doesn't seem to be an issue this year, thought - either Mia is acting much better or everyone knows how to shut her bad behavior down. Either way, whatever they're doing is working. She seems very happy at school, and she has a good mix of students in the class. Some of them are in wheelchairs, some aren't, some are much less verbal than she is, but many are far more verbal, and there are always plenty of either able-bodied aides or typical students around, so she gets to see a lot of people. As usual, she loves choir, and she's been doing a lot of other things, too. She's been making food, for instance, which she probably doesn't do a lot of, but I'm sure they're making sure she gets into it. They got a stander for her, and she gets into it quite often, which is groovy. We're working on getting a stander for her for our home, but that's a whole other thing that I won't get into right now. It's a giant ranting post on its own!
Meanwhile, her therapy is going well. She still has physical therapy and horse/swim therapy, but this past year she got a new speech therapist, which she hadn't had for a few years (we were on the waiting list!) and a new occupational therapist, which we also hadn't had for a few years. Her speech therapist comes to the house, but her OT is at her hippotherapist's clinic, so she gets two hours of therapy when she goes there. They hired the OT last August, and she knew Mia was looking for one, so we were able to get a good time - right after her horse/swim therapy. It's 25 miles away from our house, so it's a good thing that she can just stay there. Going out there twice a week would be annoying. Her OT has been working with a lot of things, but one thing she's been doing is getting Mia to use a knife, which we find very humorous but which is apparently working pretty well.
I haven't sat in with the therapist yet, because her parents are a distraction, but I'd love to see her using a knife, because I'm very surprised that she even tried it and that Mia is getting better at it.
She's doing pretty well otherwise. She keeps gaining weight, but very slowly, which is fine with us. The last time she was at the gastroenterologist he wanted her to gain some weight, but I'm trying to increase her feeding amount very slowly, because she can't work off fat so I don't want to her to get fat. She's eating as well as usual, which means she's doing fine but still doesn't eat nearly enough to get her off her feeding tube. She wants to sit a lot more than we can let her, because she has outgrown the chair she used to use. She can't really sit on it without leaning too far forward, and we can't put the straps over her shoulders so she twists in the seat and just looks miserable (even though she claims she wants to sit there all the time). So she has to stay in bed a lot, because it's a pain to bring her wheelchair into the house every day (and then get it back out every day). We can do it, but for when she's not in school for longer periods, like during spring break and over Christmas. As I noted, we're trying to get a stander, one that starts as a chair but converts to a stander, but things are going ... slowly, to say the least. When she gets it, she can hang out in the living room more often and watch all the television she wants. She's still having seizures every once in a while, but only one freaked us out - about a month (or maybe six weeks?) ago, she had her worst seizure ever. We weren't even sure what it was - we heard a weird noise and thought Norah was schlumping around upstairs (as she does; she's working on her sullen teenager act). We called up to Norah, but it wasn't she, so we went into Mia's room, and she was having a horrible seizure. It lasted far longer than any she'd ever had - at least a minute, if not two - and we were unable to calm her down for a long time, which we usually can.
She was breathing heavily and moaning and twitching quite a lot, and she certainly wasn't focused on us in any way. It woke her up, of course, so Krys stayed with her for quite a while afterward, calming her down and getting her back to sleep. It wasn't fun, but it hasn't been repeated. We're still not sure why she has random seizures, because there's no real rhyme or reason to what sets them off. She's a lot better than she used to be, but we were reminded that she's still not in the clear completely.
So that's our update on Mia. She's still a wonderful kid, although she still has impulse control problems so we have to remind her constantly not to grab and scratch us, which really hurts (she thinks it's hilarious). She's getting a bit better at using full sentences, although she still prefers one word commands. Occasionally she'll say something that's amazing, with a complete sentence and words she doesn't often use, and we'll be dazzled, but it never lasts. She's getting harder and harder to lift, because she's still gaining weight (even if it's slow, it's still inexorable) and I'm getting older, but for now, I can still lift her, so that's fine. She's enjoying school, and she always happy, so while it's frustrating that we can't find out what's really going on in her head, she seems to enjoy life. I guess that's all we can ask for!
As always, if you haven't read much about Mia, I will provide links! Here's the story of her accident. I've been doing annual updates every year since: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, and 2017. I haven't posted here since June, because I stink, but Mia should be getting her new chair soon, which will definitely rate a post, and I keep meaning to rant about the horrors of junior high as experienced by Norah. We shall see. Thanks for reading, everyone!
I mentioned last year that I wanted to post more often, and since then, I wrote on this blog ... once. About our vacation in June. As the kids get older, they settle into patterns, and not a ton of new stuff comes up, at least for Mia. Norah is dealing with junior high drama every day, but as it's junior high drama and often (but not always) as ephemeral as smoke, I don't write about it. But I will write about Mia's year, as there have been some things of note.
Of course, she went on vacation, which you can read about right below this post. We're fairly confident that she enjoyed herself, even though she wanted to watch television most of the time. But we did get her out and about a few times, and she did play in the ocean a little, so that was all right.
She also started high school, so that's been a transition. Because of her birth date (30 August), she comes in before the cut-off date for the grade (1 September), so technically she could have started 9th grade last year, but then she would have started when she was 13, and we had already anticipated that and kept her in 6th grade for two years to get her a bit closer to her peers in age. It doesn't really matter what "grade" she's in - she has an Individualized Education Program (IEP), so she follows that for her curriculum, and she'll be in school long past her 18th birthday, so keeping her an extra year in elementary school didn't really matter, and she's not 15 and in 9th grade, which lines up perfectly well (she'll turn 18 a month or so into her "senior" year). So she started high school, which meant a new school and new teachers that we had to train! It's been a pretty smooth transition, to be honest. Her high school has a big Special Ed. program, with a lots of aides and a program in which some students come in and help out, so there are plenty of people around besides the students. When we met with the Special Ed. coordinator, we were a bit apprehensive because she told us that they don't really do one-on-one aides at the school. It's in her IEP, so legally they have to give us one, but she assured us that there are so many aides and teachers that we wouldn't have to worry about it.
Meanwhile, her therapy is going well. She still has physical therapy and horse/swim therapy, but this past year she got a new speech therapist, which she hadn't had for a few years (we were on the waiting list!) and a new occupational therapist, which we also hadn't had for a few years. Her speech therapist comes to the house, but her OT is at her hippotherapist's clinic, so she gets two hours of therapy when she goes there. They hired the OT last August, and she knew Mia was looking for one, so we were able to get a good time - right after her horse/swim therapy. It's 25 miles away from our house, so it's a good thing that she can just stay there. Going out there twice a week would be annoying. Her OT has been working with a lot of things, but one thing she's been doing is getting Mia to use a knife, which we find very humorous but which is apparently working pretty well.
She's doing pretty well otherwise. She keeps gaining weight, but very slowly, which is fine with us. The last time she was at the gastroenterologist he wanted her to gain some weight, but I'm trying to increase her feeding amount very slowly, because she can't work off fat so I don't want to her to get fat. She's eating as well as usual, which means she's doing fine but still doesn't eat nearly enough to get her off her feeding tube. She wants to sit a lot more than we can let her, because she has outgrown the chair she used to use. She can't really sit on it without leaning too far forward, and we can't put the straps over her shoulders so she twists in the seat and just looks miserable (even though she claims she wants to sit there all the time). So she has to stay in bed a lot, because it's a pain to bring her wheelchair into the house every day (and then get it back out every day). We can do it, but for when she's not in school for longer periods, like during spring break and over Christmas. As I noted, we're trying to get a stander, one that starts as a chair but converts to a stander, but things are going ... slowly, to say the least. When she gets it, she can hang out in the living room more often and watch all the television she wants. She's still having seizures every once in a while, but only one freaked us out - about a month (or maybe six weeks?) ago, she had her worst seizure ever. We weren't even sure what it was - we heard a weird noise and thought Norah was schlumping around upstairs (as she does; she's working on her sullen teenager act). We called up to Norah, but it wasn't she, so we went into Mia's room, and she was having a horrible seizure. It lasted far longer than any she'd ever had - at least a minute, if not two - and we were unable to calm her down for a long time, which we usually can.
So that's our update on Mia. She's still a wonderful kid, although she still has impulse control problems so we have to remind her constantly not to grab and scratch us, which really hurts (she thinks it's hilarious). She's getting a bit better at using full sentences, although she still prefers one word commands. Occasionally she'll say something that's amazing, with a complete sentence and words she doesn't often use, and we'll be dazzled, but it never lasts. She's getting harder and harder to lift, because she's still gaining weight (even if it's slow, it's still inexorable) and I'm getting older, but for now, I can still lift her, so that's fine. She's enjoying school, and she always happy, so while it's frustrating that we can't find out what's really going on in her head, she seems to enjoy life. I guess that's all we can ask for!
As always, if you haven't read much about Mia, I will provide links! Here's the story of her accident. I've been doing annual updates every year since: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016, and 2017. I haven't posted here since June, because I stink, but Mia should be getting her new chair soon, which will definitely rate a post, and I keep meaning to rant about the horrors of junior high as experienced by Norah. We shall see. Thanks for reading, everyone!
posted by Greg at
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