The Daughter Chronicles

Thursday, August 25, 2016

The little things

When you have a kid with special needs, you need to reconcile yourself to that fact or life can get pretty bleak. I've mentioned before that I'm sad pretty much all the time, but it's a low-level, background sadness, and it certainly doesn't impede my life in any way. Every once in a while it overwhelms me, but it's usually a quick sensation and then I move on. So the big picture doesn't get to me too often, because you just have to deal with the fact that your kid is different and, in Mia's case, will never live on her own, for instance (whether she lives with us or in a group home is a discussion for the future!). It becomes your reality, and you move on.

The little things, though ... they drive me batty. Mia, obviously, needs a lot of extra "stuff" that neurotypical people never have to consider, and it can get frustrating when things don't work like clockwork. And as this is the real world, things often don't work like clockwork. Recently, things have broken down a bit more than usual, and it's been an annoying few weeks. First, her doctor situation. She's been blinking a lot recently, and rather strenuously - she reminds me of Barbara Eden in I Dream of Jeannie - and we're not sure if it's a new form of seizure, as she's never done that before. I finally called the neurologist (I kept forgetting), so we'll see if he gets back to me and if we need to figure it out. Then there's the deal with her physiatrist. I've written a bit about her physiatrist before - a physiatrist is a doctor that, unlike a cardiologist or neurologist, no one knows even exists unless you need one. She had a physiatrist at Phoenix Children's Hospital until that doctor left late last year. I had called for an appointment in October or November and they told me she had left and they were in the process of hiring a new one. No big deal, I thought - I'll just call in the spring, when they told me they should have another one, and it wasn't like it was urgent, it's just that she hadn't seen the physiatrist in a while. So I called in May and they told me the physiatrist wasn't taking appointments until July. That made no sense, but okay. I tried calling in late July, but I didn't know the phone number at that point and we had moved, so I couldn't find my old business card. I finally found "physiatry" on the PCH web site, called the office under which it was listed, and the nurse told me that she had no idea what a physiatrist was. I wasn't mad, just amused, as I told her that perhaps they should take "physiatry" off of their home page. She managed to find the right office, and I had to leave a message with the nurse ... whose outgoing message still listed the old doctor, so I didn't have a lot of confidence that she would get back to me anytime soon. I still haven't heard back, and just recently, one of Mia's therapist gave me a different physiatrist ... but of course I haven't called her yet. Finally, we need to change the way we're dealing with Mia's wrist, which is never straight because the muscles are too tight. We've been putting it in splints for years, but she eventually figures out to take them off, and we can't keep them on long enough for them to make too much of a difference. So we need to do serial casting, which is putting a cast on it for short periods of time and slowly straightening it out. It sounds like a tedious process, but we don't want her muscles to contract to the point where she'll need surgery. So we're looking for a doctor to do that, too.

The doctor situation is frustrating, of course, but not too bad. It's a bit more frustrating than usual because of the replacement doctor on one hand and a new doctor on the other, but it's yet another thing you get used to - doctors are great, but they're really, really busy, and they don't have time for us petty mortals! But then her wheelchair saga began! A few weeks ago, I tried to put air in one of her inner tubes on her wheelchair. A few minutes later the tire was flat again, which ain't good. I called the company that made the chair and told them that her tire was flat and they needed to bring me a new inner tube (they do house calls). A few days later, their technician dude showed up at my house ... without an actual inner tube. He thought she had a hard wheel - I guess that's an option - and he was prepared to install a new tire but not an inner tube. I had no idea why they sent him out there without an inner tube - I made it very clear what I needed, and they have her chair specs on file, I assume. Luckily, earlier that same day, the bolt that attaches the housing for her front caster wheels to the actual frame of the chair had split in half, and that makes moving the chair very precarious (it will still work, but if you go over any bump, the wheel would bend back and you'd basically be pushing a three-wheeled chair, which isn't good for anyone). He had a bolt in his van, so he fixed it up and said he would make sure the office ordered the part, and he even said they'd order new caster wheels for the front of the chair. Look, I painted on a photo to show you guys which bolt was broken - it's the one inside the circle in the picture below:

I called the office a few days later and asked when the parts would be in, because her tire was still, after all, flat. They told me that they would be in the middle of the following week, which would have been about the time when she started school (two weeks ago). So I was busy that week and didn't get a chance to call them, and of course they didn't call me, because that would have been ... what's the word? ... oh, yes, helpful. So last week I still hadn't called them, when on Wednesday (two weeks to the day after the guy originally came out to the house), the other bolt broke. Sheesh. I took her to school and asked them for duct tape, and I wrapped that sucker up, and when I got home I called the wheelchair place and asked if the parts were in. The woman told me they were (she didn't say anything else, so I have no idea if they came in several days before and they just had decided not to call me or if they just came in and I was on their call list for that day), and I told her the person would have to come out after 4 in the afternoon because that's when Mia gets home from school. She seemed to blanch at that (I mean, they're a service company; you'd think their fixer dudes would be available until the evening because people do have school and jobs and such), so I offered to go downtown to the office on Friday (I couldn't make it on Thursday) just to get it done. When I picked Mia up at school on Wednesday the teacher said everyone was scared to move her chair, so I said she'd just stay home on Thursday. I called the office back and asked if they could send somebody out on Thursday, as she was going to be home from school anyway. Luckily, they had someone who could make it.

I wasn't home when he showed up the next day, but Krys was, and ... he didn't have the part to fix the caster wheel. He had a new tire, and he installed that, so that was taken care of, but I couldn't believe that he didn't have the part. She called me and told me that, I said he was not leaving without fixing the caster wheel, dang it! She must have given him the evil eye, because he skedaddled out to his van and found a bolt (it's a hard bolt to find - it's very long, which seems unusual, so I wouldn't be surprised if their guys didn't have them lying around), even if it's not the exact one. He said he'd order an actual bolt that's supposed to go there, and all was well in the world. I couldn't figure it out - the original dude said he was going to order new caster wheels, and when I called on Wednesday, they said the parts were in. So what happened? The only thing I can think of is that when I called on Wednesday, I didn't tell them that the bolt had broken, and they ordered only the caster wheels. See the picture above? Doesn't it look like that entire black housing that's bolted to the main frame should be the "caster wheel part"? I wonder if they only got the wheel part of it, which seems insane. But that's the only thing I can think of. But that would be insane, wouldn't it?

So Mia's wheelchair is all groovy again, although I have to call them next week and ask if they're getting the "real" bolt in at some point. But it took a lot longer than I thought it should, and it's just some of the bureaucracy that we have to deal with fairly regularly. Just this week, the court finally approved her accounting from 2015, so they were able to release the funds that she needs to pay for stuff. This wouldn't be a big deal except, of course, that some things she gets are fairly expensive and every year about this time, her funds run really low and every year the court gets later and later in approving the new year's budget. It's just the wheels of justice grinding slowly, but it's still annoying, because we have to ask vendors for a bit of time to pay bills, and that's never a good thing. They're always understanding, but that doesn't mean it's not annoying. I turned in the receipts and bank statements from last year in March, I think, so you get an idea of how long it takes for the court to go over things. Part of it's my fault, of course - I could get the accounting stuff in by the end of January, probably, and I think I'll be able to do that this year, but the court still takes forever to go over it. I've been doing this for over a decade - don't you think if I was going to spend Mia's money on jet skis for me and Krys, I'd have done it by now? I get why they do it - probably one person embezzled their kid's money once, and everyone freaked out - but they could do it a bit faster!

These are just some of the things we deal with on a semi-regular basis. Everything, of course, is predicated on the fact that we're glad that our daughter isn't, you know, dead, but it's still frustrating when you have a kid with so many challenges, both physically and mentally, and the support system around her creaks a lot when you put the tiniest bit of stress on it. We appreciate her therapists, her doctors, and even her wheelchair company, but man, sometimes the little things get to you almost more than the big picture. And that's kind of a bummer.

Friday, June 03, 2016

Norah's fifth grade year

Last week Norah finished fifth grade, which wasn't her best year. She's not quite sure why, but she just had a rough time.
Part of it was her teacher, who was unlike the ones she had in fourth and third grade. Her third grade teacher is a very funny woman who made class a lot of fun. Her fourth grade teacher is a very warm, maternal woman. Her fifth grade teacher is a very nice lady, but she was a bit older (she's 65) and not as funny or warm. Norah had some difficulty adjusting to her, even though we warned her that she shouldn't base how she approaches school by how she liked her teachers, because she's going to have a lot of teachers in the future that she might not like. She got to like the teacher over the course of the year, but it was still tough for her at the beginning of the year.

Then it turns out that fifth grade is pretty hard. I mean, crazy, right? Norah has always done very well in school, and she did pretty well this year. She got more Bs than she had in prior years, but her school counts 94% and above as As, so it's already a bit more difficult to get them, and a lot of her Bs, according to her teacher, were low 90s percentages, which would have been As in other schools.
We've always told her we don't care about her grades as long as she does the best she can, and we're pretty confident that she does, so the slight uptick in Bs didn't bother us. The problems came because she was just having a harder time with the work and I don't think she knew how to handle as well as she could. It's hard to help her because as nice as we might be, she gets far more upset when Krys or I try to help her with school work than when her teacher does. I don't know why. I told her that next year I would help her more, especially with spelling - she's always been good at spelling, but this year she slipped quite a bit - and she seems to be okay with that. We shall see. She also didn't want to do very much extracurricular stuff. She still joined the orchestra and she submitted stuff for the school's Arts & Letters night (and she tied for first place for her 3-D art, because it was awesome), but she didn't try to run for Student Council (which she did in fourth grade), she didn't do any work for the book awards that the school gives (even though she reads a lot, she didn't write up plot summaries and character biographies, which would get her an award at school), and she had a bit of an attitude throughout the year. When I asked her about it, she said as sarcastically as possible (which isn't very), "Daddy, I'm a tween." I don't think she knows exactly what that means, but I guess it means that she can have an attitude and I just have to accept it. She always says it rather jokingly, so I don't take it too seriously, but I still have my eye on her!

She didn't really love the social aspect of fifth grade either, which is too bad because it's only going to get worse. There's a bit of the whole "kids liking kids" thing in lower grades, but it really began in earnest this year, and man, it's annoying.
Norah wasn't too into it - she told Krys she liked a boy early in the year, but she got over that pretty quickly - but her friends were, and they dragged her into it a lot. She was always coming home telling me about some boy liking her friends and whether they liked them back and then they didn't like them but they liked somebody new ... it was exhausting. Plus, some kids were "dating," which we told her was crap, as the kids were never alone with each other and didn't even see each other outside of school. I guess "dating" means that they acknowledged that they liked each other, because often, it was simply a boy telling a different girl that he liked another girl (Norah got this a lot) or the girls just talking amongst themselves about who they liked. Norah didn't love it and hung out with her one friend who also wasn't into it too much, a girl we told her to stick close to, because she knows what's up. Both of them often mocked all the girls for getting caught up in the whole "romance" thing, but it was hard to ignore it all. I told Norah that she might get swept up in it sooner rather than later, but no matter when it became important to her (it didn't become important to me until I was 16, because I'm weird, I guess), if the boy can't tell her directly that he likes her, he's not worth it, and if she can't tell the boy directly, she's probably not as into him as she thinks. (This is all assuming she's not into girls - she's never given any indication that she is, and I hope she would know we'd be fine with that if she were, but it doesn't seem to be the case here.) We'll see what happens going forward. Norah had a rougher time this year socially not because her friends turned into jerks, but they started liking stuff - boys, mostly - that she wasn't as interested in. So I think she had some problems there, although once she started regarding the weird "romance" dance with a jaundiced eye, she got better with it.

It's tough to say she's turning into a sullen teenager, because she's not, and when I say she had more of an attitude this year, I don't mean she had much of one - she's still Norah, after all - just that she is changing, and we're hoping we can make sure her life is still good even as she goes through them. She's still a happy girl and she's still respectful to us and her teachers (well, occasionally she gets a bit lippy with us, but we're fine with that as long as it doesn't get out of hand), but she is bored a bit more often these days - something we've always worried about because Mia commands so much of our attention - and she isn't as interested in trying new things.
She's still playing tennis, and she has fun with that, but she stopped taking Latin lessons and she never got back into karate. We don't push her - she'll figure out what she wants to do - and she's still interested in doing some stuff (like acting, although we haven't found a good acting camp to send her to), and she's still in Girl Scouts because she wants to be a camp counselor in the future, so we don't have many complaints. She's a great kid.

I do hope her sixth grade year goes better. The sixth grade teacher is also very nice, but like the fifth grade teacher, she seems fairly no-nonsense and tough, and they're getting a new sixth grade teacher at her school who I know nothing about. So we'll see. I hope Norah accepts our help with her schoolwork and I hope she learns how to work better - I think she was surprised that it wasn't easier for her, as it has been, so she needs to learn how to study better. Of course, I hope she's happy. She doesn't need all the drama!

Monday, April 18, 2016

Unlucky 13!

I haven't written on the blog this calendar year because, well, things have been steady. Normal and steady. I could write something every week or so about how things are progressing normally, but that wouldn't be very interesting, would it? However, it's that time of year again - the anniversary of the accident that caused Mia's traumatic brain injury, so I want to write about her year.
It's just what I do!

The big news from this past year has been, of course, her continuing recovery from spinal fusion surgery. She had the surgery a year ago (plus a few days), and it went very well. Then she got her staph infection, which was less fun. That cleared up, though, and she's been on antibiotics ever since, which have kept the infection at bay. The problem with staph infections is that they're very stubborn and hard to kill, so the doctor doesn't know if it's completely gone or not. He told us that it tends to get into the smallest places, like the screws keeping her titanium rods attached to her spine, and if it doesn't get rooted out, they might have to open her up and take the screws out. This sounds awful, but it's not too bad - the whole deal with spinal fusion surgery is that the rods fuse to her spine, so the screws are, after a while, superfluous. Doctors leave them in because, of course, to take them out means opening up her back again, which is never a great thing. So it's not that they'd undo the surgery, but we'd like to avoid it if we can.
The only way to tell if she doesn't have the infection anymore is to take her off the antibiotics and see what happens. Fun! She has an appointment with her doctor in May, and that's exactly what he's going to do. So we're hoping that the infection is dead and gone. That would be nice.

The surgery has really helped her a lot. She's sitting up much better (although she still twists her hips too much, something we'll have to bring up to the doctor) and she seems more alert, probably because she's not expending so much energy sitting up, which I think wore her out a lot. We still put her to bed between 6 and 6.30 every night, but she used to look really tired as that hour approached, and that's not the case anymore. We'd like to keep her up a bit more, but she doesn't seem to mind going to bed that early and we think she still needs a lot of sleep. If it ain't broke, don't fix it. She's also been standing in a stander at school, which is great. She has PT in the afternoon on Tuesday, which I always forget about, so I haven't seen her standing yet, but her aide tells me she looks pretty good. We don't think she'll ever walk even with a stander - she never seems interested enough to get anywhere - but if we can get her upright again for significant time during the day, I think that would do her a lot of good.

She's been doing really well in terms of weight, which has been a constant struggle for years. Last year at this time she was about 66-67 pounds, and currently she's about 82.
That's a huge leap, and it coincided, we think, with a growth spurt (she did turn 13 in August, after all), but she also was eating quite a bit for a few months this winter. She's slowed down a bit in that regard, but she looks great - actually like a healthy person rather than the skeletal girl she used to be - and she seems to have more energy. Of course, that's expressed by grabbing and pinching, as she always does, but that's just something we deal with all the time, and I doubt it will ever change. We're just happy that she's filled out a bit, because she is much healthier now than she's been in the past.

Her therapy continues, with her Occupational Therapist rejoining us after a few months off last year when Mia became so impertinent it was hard for the OT to work with her. After she recovered from her surgery a little, the OT came back and Mia's behavior has been better. After a year without a home Physical Therapist, she got a new one in the fall ... about the time she lost her Speech Therapist, who went to work for a school, which I guess is a bit more stable. So she's been without a Speech Therapist for six months or so. Her PT has worked pretty well with her, and once we move (we've outgrown our house, so we need to find something else), we hope to have more room to get our own stander. It would be nice to get her upright more often than what she does at school, but standers take up a lot of room. She's been back on her horse the entire winter and is doing well there (soon it's back in the pool!), so that's nice too. She seems to be talking more, which I assume has something to do with the more energy, but I also hope is because her Speech Therapist at school is working with her, too. She's not quite a sparkling conversationalist, but she's always getting better at using words correctly, which is keen.

She began junior high this year, so she's at a new school, and that's gone well.
Her teacher is a veteran (which isn't always the case with special ed. teachers), and her aide is very good with her. They love Mia, of course, even though she has been very mean to her aide a lot, unfortunately. She seems to like the kids, too - some of them she knew in elementary school, which is nice, but others are new to her, and they seem to like her and she seems to enjoy their company, although they have to watch her because, of course, she might grab them at any moment. She began her period in December and we put her on birth control pills to control that, and after using one kind that didn't work, the latest pills seem to be controlling her menstrual flow better. It doesn't seem to affect her behavior too much - she was grouchy a lot before puberty! - but if we can eliminate anything that makes her life more difficult, we'll do it. So socially, she seems to be doing well.

Obviously, she still has plenty of issues. We don't know if she's going to need surgery on her wrist so that we can straighten it out - we're still hoping casting it will fix the problem, but who knows - and, of course, she still has a traumatic brain injury. But her surgery went well and it seemed to push her into a new stage, one where she's able to engage a bit more because she's not trying so hard to sit comfortably and her back doesn't bother her all the time. In the past year, she seems to be more part of conversations with us, even if she's still not able to talk very well. Her sense of humor is quite fun - she loves bodily noises, of course, but she also loves it when Mommy or Daddy make "mistakes," like dropping something on the floor - and she's gotten better at doing funny things (well, funny to her) when she knows we're not going to like it.
She gets a mischievous glint in her eye and she makes sure we're looking at her, and then she does something we don't like and laughs when we tell her to stop. So while she still doesn't talk a lot, it's nice that she's able to interact with us a lot, even if she's doing things that frustrate us. Kids - what are you going to do?

As usual, every day is difficult with her, and as she grows, it's going to get even harder (I went to Seattle last weekend, and Krys had to move her all by herself, which was no fun for her), but we'll probably be getting a lift soon to help us move her, so there's that. But every day is great, too, because she's alive and fairly happy (except when we do something horrible like move her or dress her or brush her teeth - we're monsters, really). It's amazing to us that it's been 13 years, but it's been quite the experience. As she gets older, we know we're going to have many more challenges, but at least we know we've been able to handle it so far. She's a great kid!

Previous updates: 2015, 2014, 2013, 2012, 2011, 2010, 2009, 2008, 2007, 2006, 2005. And here's the story of her accident, which I always link to in case people don't know about it.

Thanks, as always, for reading, even though I don't update as much as I used to. I guess that's a good thing, because it means nothing too traumatic is going on!

(These last two pictures are from this morning, just to give you an idea of what she looks like right now! She just got a nice haircut, because she still pulls her hair out too much for our liking and we try to keep it short so it's not easy for her to do it. Yes, it's very vexing.)

Wednesday, December 30, 2015

An update on Mia's horse riding

Mia rides horses during hippotherapy, but they usually stop in April or so when it gets too hot, and they switch to swimming. So since her back surgery, she had a few months off before she had to get back on a horse, but she's been riding for a few months now, and I did take pictures, but of course I've been slow to post them. We thought her surgery would help her sit up better, and it has, very much. She's still having some problems when her muscles get twitchy, because she tends to lean forward and isn't able to get back up without a lot of difficulty, but when her muscles aren't acting up, she's sitting really well on the horse. Here are some photographs!

You can tell how much better she's sitting, which is nice. It makes therapy easier and more helpful, and she is, naturally, much happier. Yay, Mia!

Sunday, November 15, 2015

Mia's bra and other teenage stuff

Mia turned 13 in August (I'm so old!!!!), but she didn't become a "teenager" until November, when Krys bought her some bras. Mia has had some adult developments for a few years, but recently, her breasts have gotten just big enough that Krys started to worry that she was becoming uncomfortable. She decided it was time for Mia to start wearing bras, and so it was done! Mia thinks it's all very humorous, of course - for years, she has enjoyed pointing out "boobies" on Mommy and Daddy (yes, she does it to me, which is technically correct, I guess, but obviously different), and she likes mentioning her own "boobies" as well. Now she enjoys telling us about her bra when we put it on her. Right now, she still isn't very developed, but it's nice that she's perfectly happy with her new undergarments, because it bodes well for the future.

A few days after she started wearing her bra, the second thing happened. Yes, she got her period, which we've been anticipating for at least two years. We've been taking her to the endocrinologist to get her checked, because we wanted to make sure that we were prepared for it. He told us that we can give her hormones to regulate her a bit, but there was a catch: insurance companies won't pay for it until she actually goes through a menstrual cycle. My question, of course, is How would they know? I mean, I get that the doctor wouldn't want to prescribe it if she hadn't gone through a menstrual cycle, but what if we just lied to him? When she finally started bleeding last week, I called the doctor to let him know, and it's not like he asked for proof or anything. It's just weird. Anyway, she started bleeding, and there was ... much rejoicing? I mean, not really, but at least the waiting was over. She didn't seem to feel any discomfort or pain, which is nice, and it wasn't a very heavy flow, so that was nice too. Norah has been freaking out a little about getting her period (which is, let's hope, still three years away) because she thought there would be a lot of blood, so she was happy to see that Mia didn't bleed very much. I don't think Krys had the heart to tell her that everybody is different, but I guess she'll find that out soon enough!

So the doctor prescribed birth control pills, because that's what they do. We give her the pills but skip the placebo week, just moving on to more of the actual pills. This means she'll still get the benefits of the hormones your body produces but won't bleed. The doctor told us that once or twice a year we should give her the placebo so that she can get cleaned out a bit, which is just one of those things that, not for the first time, makes me glad I'm a man. We started giving her the pills today, and we'll see how that goes. As I'm often dealing with her by myself, I really didn't want to deal with a lot of blood, so I hope the birth control pills work. I have no reason to think they won't!

Mia's transition to adulthood makes me think about what we're going to do with her as she ages. A lot of people have expressed admiration that we've dealt with having a special needs kid, which never made sense to me - I mean, she's our kid, what are we going to do? But having a child with special needs seems easy compared to having an adult daughter with special needs. I mean, she's hard to deal with right now, but we knew we'd have to raise a kid when we decided to have kids. We didn't anticipate having her after she turned 21 or so, but it's coming faster than we might want, and it's something we're going to have to deal with. I know a few people with adult special needs kids, and there are plenty of programs for them, but it's still terrifying. Of course, even further down the road is what's going to happen after we're dead, but that's not as immediate as Mia growing up and needing something to do and someplace to go. We still have time, but we know we have to start thinking about it.

So yeah, having a child with special needs is hard. But man, it sounds easy when I think about what's coming. These past few weeks have just been a fun reminder of the future! Yay!

Monday, June 29, 2015

Turning the corner?

I haven't posted in two months because Mia's back surgery stuff has taken up so much of my time, and it's been dominating the news in our household, too, so it's just been hard to sit down and write when something new always comes up.
I've been updating a bit on Facebook, but now that she seems to be out of the woods at least a little, I thought it would be good to write a bit more in-depth here.

Her surgery was on 8 April, and all went well. It was far shorter than I thought it would be - the doctor told us it would be about four hours, but I didn't know if that was from when she disappeared to when she was finished or when he opened her up to when she was finished, because she went back with the anesthesiologist at 8 o'clock (in the morning) and the doctor didn't start until a little after 9, and he was done two hours later. He was pleased with the surgery, as he said he got her a lot straighter than he thought he would be able to get her - her back was curved so much that he said there was little chance of making it completely straight, but he wanted to get it within acceptable parameters, and I guess it was better than he thought. She had to spend a few days in the hospital, of course, but they're keen to get her out of there, so we were hoping it wouldn't be a long stay. She managed to get discharged the following Monday (the 13th), and she settled down in her hospital bed in her bedroom for a while.
The doctor told us to get her up as often as possible, so we tried to do that, too. I was hoping she could go back to school in May, because it was the last month of her time at her elementary school, and I knew everyone would want to see her before she moved on to junior high.

She was okay for a few weeks, but then she got a mild fever, which is always annoying. It never got too high, and it often came down, but it persisted. I took her to the ER on 30 April, because it rose that night and, of course, her pediatrician was unavailable. Krys noticed that along her spine, it seemed a bit spongy, too, which was probably not ideal. The night at the ER was pretty awful - we waited for almost three hours in the waiting room, and I told them I was going to leave because she could just as easily sleep at home and I could call the doctor in the morning. I don't know if that spurred them into action (the nurse I spoke to was very sympathetic, but she said they kept having higher priority emergencies come in, which, fair enough, but then I could just go home, right?), but soon after that, we got into a room. Mia slept fitfully through the night, but I was awake the entire time, and then took blood and ran tests and concluded that they had no idea what was causing the fever. They asked if I wanted to admit her, but I said I would just take her home, as she had an appointment with the surgeon the next week and if the fever got worse, I'd just bring her back to the ER. So that was that.

I did see the surgeon the next week, and he told me that she had some fluid build-up along the spine, which was not abnormal, and it usually caused a fever.
He took a look at her back, which seemed fine. It wasn't red, and when a bit of fluid oozed out of a small open wound, he noted that it was clear with a bit of red mixed in, which meant it was just the fluid with some blood in it. He said it would have been a lot darker had it been infected. He said that the fluid would seep out through the skin over the course of some days, but to keep an eye on it. That sounded good to me. I took her home and kept an eye on her. The following Saturday (the 9th), it started to leak out. Quite a lot, actually, getting all over her bed and shirt, so I put her in the bathtub to let the rest seep out and clean her off. Krys was off in Pennsylvania dealing with what turned out to be an overblown medical emergency with her mother, so dealing with Mia by myself was oodles of fun. I got her out of the bath and noticed that protruding through one of the open wounds in her back was what looked like a bubble of pus. Well, that was what I was supposed to be looking for, so off we went to the ER once again. After they ran tests, the determined that it wasn't exactly pus, but subcutaneous fat, which often sticks out through wounds. Had I known that, I probably wouldn't have taken her to the hospital, but it was good I did, because they also determined that she had a staph infection. Which meant ... more surgery!

They're still not sure how the staph infection got in her - it could have happened during the first surgery, even though they try hard to sterilize everything. They don't think it was very much, because it took so long to grow and wasn't even noticeable when the surgeon looked at her a few days earlier - in fact, she really didn't have any outward signs of it even that Saturday, except for the fever.
So I guess we caught it early, which was nice, but it still meant they had to open her up again. So on Saturday evening, they operated on her again, and this time, they left her back open. They put what I assume was a plastic sheath right beneath the skin and placed a vacuum beneath that to clean her out, but they still left the skin open, and it was one of the most horrible things I've ever seen. They left her open until Tuesday, when they closed her back up. She was able to leave the hospital on Friday, the 15th, and she hasn't had to go back since. Huzzah!

Her doctor put her on an aggressive antibiotic regimen, as she had a PICC line in her arm for six weeks, and we gave her antibiotics three times a day, waking her up every night between about 9.30 and 10.30 to do so (we didn't try to wake her, but she usually did). We had to make sure there wasn't any air in the saline we gave her, because, you know, that could kill her. Good times! She didn't love it, but she dealt with it. She also had to take an oral antibiotic - Rifampin - that we gave to her through her G-tube which came in capsule form, so I empty it into water and then put it through the tube. The powder in the capsule is red, and it stains everything. It's quite annoying. Her PICC line is out, though, and we've moved on to a different oral antibiotic, which we'll give her for at least six months. The doctor originally said six months, but the last time I spoke to him, he said a year, so I guess I'll find out in a few months when we go in for a follow appointment. And, because it's Mia, she got a yeast infection, presumably from the antibiotic.
We've been treating that for a few weeks and it looks much better, but we're hoping now that she's switched antibiotics, it will go away. We shall see.

She saw the doctor on the 11th of June, and he took her stitches out, and her back looks pretty good (I mean, she has a long scar up it, but the skin is closed and it's not red or inflamed at all). We're finally able to give her a good bath (we couldn't get the PICC line wet at all, so even though she had her stitches out, she was still wearing a garbage bag over her arm), and she seems perfectly fine with not being woken up in the middle of the night. She is sitting more often and longer every day, even though she's still not ready to sit all day. We're still keeping her fancy chair in her bedroom, because we have to transfer her back to her bed so often, but she's getting better. So that's nice.

She didn't get to go back to school because of the infection, but she was out of the hospital on the last day, so I took her to her "promotion" ceremony. She sat very well, and everyone was very happy to see her. She's been going to that school for five years, so a lot of people have gotten to know her well, and they were happy they got a chance to say goodbye. She's been well enough to go to her special needs summer camp, although they've had to give her lots of breaks in the bean bag because her back gets tired. Obviously, we're hoping that by mid-August, when school starts, she'll be recovered enough to sit most of the day. She finally started physical therapy again, as she hadn't been cleared for that, but now she is.
She wasn't able to go in the pool because of her PICC line, but I hope she can go in this week (the PT was getting her pool redone, but it should be finished). She really digs the pool.

Mia has been forced to be fairly tough throughout her life, unfortunately, and she's been pretty good through all this. Her hips hurt her, I think, probably because she's been lying down so much and hasn't had a chance to stretch them, but we hope that will change now that she's cleared for therapy. She doesn't really mind the hospital except for the people coming in at all hours of the night and prodding at her, and even that just makes her whine a little. She's still our happy girl, and I think the surgery will help her immensely, as she's already sitting so much straighter and we hope this will help with her standing. Her PT put her in a stander last week and she didn't have any problems with it. She still whines a lot, but, I mean, wouldn't you?

Here's the most recent photograph of her back - it looks really good:

And here are her X-rays from before her surgery and after. The first two are from before, and the next two are from after. The difference is pretty dramatic. Note in the last one, how much hardware is actually inside her. Yikes.

I was amazed when I saw how much better her spine looks. Technology, right?

So that's the latest update on Mia. We always keep our fingers crossed that she won't have to go back to the hospital, so we're doing it now!

Saturday, April 18, 2015

Twelve of one, dozen of the other

It's 18 April, which you might recall is the anniversary of the car accident that caused Mia's traumatic brain injury, and so that means it's time to check in on her annual progress. It's been 12 (!!!) years since the accident, and yes, I'm as amazed by the passage of time as you are. I can't believe it's been that long sometime, but here we are.

If anyone doesn't know what Mia's deal is, I wrote about it back when I started this blog, ten years ago. Every year she makes progress, although occasionally it's very slow and haphazard, and this year was no exception. She has continued with her many therapies, but there have been some setbacks in that area. She's still doing well with her hippotherapist/swim therapist, and her speech therapy is going fine, too. Unfortunately, things aren't as great with her other therapy. Beginning around December/January, she began being somewhat unresponsive to her occupational therapist. She was trying to pinch her a lot, and she wasn't listening to instructions, and things were deteriorating a little. All of her behavioral problems, we think, can be traced to her back, but I'll get into that below. After a few months of this, her OT thought it might be better to take a few months off. So she hasn't seen her OT in a while, and we're looking for June or July as a time when she can come back.
Meanwhile, Mia lost her physical therapist in October, which is also a pain. He had a lot of new cases for kids 0-3 years old, which he was required by the state to take on, and they were all very far away. Mia was his last client anywhere near here, and he didn't have the extra time to come to see her. Mia's insurance for PT ran out a few years ago, so she was a private client, and state-mandated work takes precedence. It was her original PT, so he knew her very well and did a lot of great work with her, so when he left, we were pretty bummed. We contacted the business that provides her speech and OT and they put us on a list for PTs, but we still haven't heard anything. It's a bit of a bummer.

However, at school, her PT has gotten better. At the beginning of the school year, she had some issues with getting up in a gait trainer and walking - she was being very poorly behaved, and she had some personal issues with her aide. In December, she got a new aide, and she has clicked nicely with her, so her PT at school decided to try getting her up in her gait trainer again. It's been going well - she's been able to stand (awkwardly, but still) and move her legs to walk, even though she still needs to be strapped in and her left leg doesn't move as well as her right leg. Obviously, she's going to take a break from that for a while she recovers from her back surgery, but we're hoping that when she returns to school full-time in the fall, she'll be able to stand up straighter and move her legs better. Ever since 2011, when her muscles inexplicably got tighter, we've been working toward getting her upright again, and this past year she's made a lot of progress in that regard, which is nice. We got her a new splint for her arm, which has worked pretty well.
Her old splint was a dynamic one, which means it pushes back against her and forces her to work very hard to bend her wrist, which we didn't want - her wrist needs to be straight so the muscles don't contract too far. It worked pretty well, but her physiatrist thought a resting splint, which simply holds her wrist in one place and doesn't force her to work, might be better. She definitely likes it more, because it's not as much work, so she wears it a lot longer. I don't know if she'll ever need surgery on her wrist to fix the problem, but for now, her doctor is happy with the splint.

Her school life has gotten a bit better since she switched aides, as I mentioned. Early in the year, she had a new aide, as her aide from the previous two years got a better job with better benefits, and the new aide had to get a handle on Mia and her behavior. Unfortunately, she never really did - she liked Mia a lot, but I think she took Mia's pinching too personally, and it really upset her that Mia wasn't nicer to her. We told her repeatedly that it wasn't personal, but she just couldn't handle the violent way Mia reacts to things. There may have been other factors that we weren't privy to, but I know that was a big part of it. She got a new aide and things improved greatly. The new aide even says that Mia never pinches or tries to bite her, which is surprising to us. Mia likes her aide so much that the other teachers and aides at her school have a really difficult time with her when her main aide is gone, either when she's absent for the day or even just for thirty minutes for lunch. Mia is horrible to anyone else who tries to work with her, and we're not sure why. I mean, she's not very nice to us, but we're doing horrible things to her like changing her diaper or moving her around.
At school, she seems to take great pleasure in lashing out at anyone who comes within her "grabbing zone" whether they're doing anything to her or not ... except her aide. She's nice to her speech therapist, I guess, but again, she's not making her work physically, so maybe that's it. Her current aide is assigned to her, not the school, so we're hoping that she can move on to seventh grade with Mia in August. Mia is finishing her second year of sixth grade - we held her back because she would have been 11 when seventh grade started, and we didn't think there was any reason to rush. Now, we think she's ready. We've visited the middle school she'll be attending, and it seems like a nice place, and the teacher is very experienced. So we'll see how that goes.

Her behavioral issues don't seem to be linked to puberty. She'll be 13 in August, but the last time we went to the endocrinologist, he said her blood tests showed that her hormone levels are still low, so while she's showing signs of puberty, she's not in it yet. We're still planning on trying to manage it - apparently you can cut the hormones from the pituitary gland and introduce them artificially, which gets her the hormones she needs but also keeps her (theoretically) from having crazy mood swings. With the way she behaves now, the last thing we want is her to have crazy mood swings. Her weight is doing well, although she's gaining very slowly. We increased her feeding from about 750 ml of formula to 1000, with an extra 800-900 ml of water per day, and she's handling that perfectly fine. She weighs about 66 pounds now, which is about 10 pounds heavier than last year, so that's something. I don't know how much she's supposed to weigh, but she looks very healthy, so there's that. We still can never get a good height on her, but now that her back is straight maybe that will be a bit easier. Her gastroenterologist is still not completely happy with her bowel movements, but I refuse to give her Miralax or another powder laxative, because it doesn't cause her to go regularly and it turns her poop into mush, which is absolutely no fun to clean up. So we've been giving her suppositories as needed, and that seems to work fine. I know her gastroenterologist would rather her poop every day, but I'm much happier with her going once a week as long as the stool is nicely formed. If the doctor wants her to go every day, she can come over and bathe Mia every day when her poop gets everywhere.

So Mia is doing pretty well. Of course, dominating everything these days is her back surgery, which she had 10 days ago on 8 April. Her Cobb angle a week before the surgery was 85 degrees, which is pretty serious. We don't know what it is now (the surgeon won't take X-rays until the 7th of May), but he was very pleased with the surgery and she looks a lot better. I'm going to write more about her surgery in a few days, but it went very well and she's recuperating nicely. I hope to send her back to school on 4 May, at least for a few hours, but we'll see. Her straighter back will help relieve her constipation, we're sure, and we hope it will help her when she's in her gait trainer, as well. She has to get used to the new way her body is positioned, but she seems to making good progress in that regard.

As always, she's usually a very happy kid, despite her pinching and attempts at biting when we move her around. She's getting better at using sentences (even if she doesn't like to, because why use more than one word when she can use one?), and she always happy to see everyone. We don't know how much the improvement in her back will change her behavior, but we're hoping it does make her feel better, because it can't be fun bending to one side all the time. Her sense of humor continues to develop - she loves farting and burping and will laugh like crazy whenever she or anyone else does it - and she seems to be interacting with kids better these days, which is nice. When she goes to middle school, we hope that this will continue, because she'll be in contact with an even larger pool of children. She hasn't figured out how to move her new wheelchair yet, because the wheels are a bit farther back than on her older one, but she's getting there, and I'm sure she'll get it eventually.
Even with her behavior, her quality of life seems fine, and we're hoping it continues to improve. She deserves it!

I've been doing these annual updates for a while, as you might expect, and if you want to take a trip down memory lane, here are the links: 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, and 2014. As always, I'd like to thank everyone for reading - I was talking to someone the other day who was asking about Mia and said she didn't mean to pry, but we have no problem discussing her life, and we've gotten some wonderful feedback over the years. Mia, of course, makes everything worth it.

Sunday, April 05, 2015

(New) bed time for Mia

Ever since we found out that Mia needed back surgery, we've been talking about getting her a new bed. Even longer than that, we've been discussing what would happen when she got so big neither of us could pick her up comfortably. Krys has already reached that point, and she's getting bigger slowly but surely every day. So we knew we'd have to get a hospital bed that we could lower so that transitioning her from a chair to the bed would be easier than picking her up.

Krys found a hospital bed on-line, and so recently we bought one. They don't take insurance plans; we have a prescription for it, so we're going to try to get something back from the insurance company (I'll wait until you pick yourself up from the floor after laughing so hard you fell out of your chair). It cost less than $900, but we spent an extra $200 for someone to come out and assemble it. I wasn't taking any chances with it! A few weeks ago, it arrived, the dude put it together, and we were off! We decided to switch the kids' rooms, because Mia's old bed is built like a tank and it was much easier to disassemble Norah's bed and move her into Mia's bedroom. She likes her new bed; we put the box-spring and the mattress on the frame, and she's now sleeping about four feet off the ground. We told her we could take the box-spring off, but she loves being high up. She's wacky. Mia, meanwhile, doesn't care about where she sleeps, and she's adjusted to the new bed perfectly well. Krys bought her a television for her room, as when she gets out of the hospital after back surgery she's going to be bed-ridden for at least a week (and we hope not longer than that). She doesn't seem terribly impressed with the way the bed raises her head, but I bet she'll like it when she's trying to watch television!

We haven't needed to lower it to get her in it yet; she still doesn't weight all that much (66 pounds the last time we got her weighed) and I can carry her relatively easily. Still, it's good to have. It's nice and long (the mattress is 80 inches long), so she should fit in it for several years, and Krys bought some padding for it, as the mattress isn't exactly the most comfortable thing in the world. It will be interesting to see how she deals with it when she's recovering from surgery. Maybe it will make her life a little bit easier!

Here are some pictures of the assembly and Mia lying in the new bed. She is, of course, as cute as can be.

Tuesday, March 24, 2015

The saga of Mia's new wheelchair!

Mia got her first "real" wheelchair (she had a stroller that was kind of hybrid before it) in November 2011, so three years later, she had outgrown it by quite a bit. In December I took her to the wheelchair place to get her measured for a new one. The last time, it took two months from when she got measured to when she got it. Surely it wouldn't take as long this time, right?!?!?

When I got her measured, I mentioned to the dude that we were getting new insurance at the beginning of the year. He told me not to worry about it, because it would be covered under the insurance we had at the time. The saga of our insurance is wacky, too, but basically, we kept Obamacare (through Aetna) last year even after Krys got a job, because it was cheaper. Then her company got sold, and the new insurance was cheaper, so we were switching at the beginning of the year. That's crucial to remember.

So we hunkered down and waited. They have to make the wheelchair to her specifications, of course, and they have to send it through the insurance. That's always the fun part. So we waited. Around the end of January/beginning of February we received a letter stating that Aetna had approved the wheelchair, but the date on it was after the first of the year. We wondered if the company needed to send it through the new insurance even though the dude told me not to worry about it. I called the company - and didn't get through to the woman I needed to talk to, which is not surprising (it's the same company that made her chair three years ago, and I was dealing with the same people - the woman is very nice and fairly helpful, but she's dreadful at returning phone calls), but once I talked to her (she actually returned my call promptly, which would not last), I found out what happened. They had checked the eligibility of Aetna in January, and we were still active, so they submitted it under that. Here's where it starts to get annoying (it would get much more so): Aetna did not let us cancel our coverage. They told us that we couldn't just cancel it, like responsible people. They had to generate a bill, send it to us, and we had to not pay it. Then they would cancel us. If this sounds like the dumbest way to cancel something that you've ever heard, well, you're not wrong. We haven't paid a bill since December, and we just recently got a letter saying that they were going to cancel us by the end of March if we didn't pay. I mean, really. I'm very grateful for the ACA because we needed insurance when Krys was laid off at the beginning of last year, but that's just moronic. Anyway, I told the woman that we're covered under new insurance (you know, like I told the dude in December), and gave her all the relevant information, which I could have done, you know, early in January. She said she would submit it to the new insurance (United Health Care), and we were off!

The interesting thing about it all is that the woman told me the chair was already done and on its way to their showroom, and she told me she wouldn't make me wait for it until the new insurance signed off on it because that wouldn't be very nice. She told me that it would be 10 business days until it arrived. So we waited. And we waited. She told me this on a Friday, so two weeks later, I expected the chair to be there. I even waited until the following week to call her. So I called her. She didn't answer and never returned my call. The next week Mia's teacher called me. The bus driver didn't want to take Mia on the bus anymore because the brakes on her chair were pretty much shot (her size was the main reason she needed a new chair, but the worn-out brakes were a major consideration, as well). I called Transportation to see what the deal was, because the bus has straps to tie her down, after all, and her brakes aren't as necessary on the bus as they would be, say, when you just want her to sit still. The dude at Transportation told me that it wasn't about when the bus was in motion, but when the driver was loading her onto the bus and in the process of strapping her down. If her brakes were worn out, she could easily move the chair and bang the driver on the head while the driver was kneeling down strapping her in. Fair enough, thought I, but I did note that Mia has an aide with her, and she could hold the wheelchair still. The dude at Transportation told me, and I swear I'm not making this up, that the aide is not qualified. Not qualified to keep a wheelchair from moving for less than a minute while someone else straps it down. I didn't argue - the rules have been etched in stone, I'm sure, for centuries, and they're not going to bend them for me - but I did chuckle to myself a little. I got off the phone and immediately called the wheelchair place, and got ... no answer. So over the next week-and-a-half, I had to pick Mia up from school. Sigh.

I called the wheelchair place again - and got no answer again - before deciding I would start calling every hour, on the hour. The first time I tried that - on the Monday of the next week - I actually got through to the woman. She told me that she was still waiting for the insurance to come through, and that the chair was in their possession. So could I get it? She told me that they could deliver it that Friday - four weeks after she told me it would be 10 business days until it arrived - and that the dude would come out to our house late on Friday afternoon. Then, of course, he was about two hours late even for that, but her new chair had arrived! And yes, it took even longer than two months!

It's basically the same kind she had before - it's the same brand, the same color, and it has her name embroidered on the back and the front wheels light up when the turn (no extra charge for those two fun features). It's longer and wider than her previous one, which is nice going over small steps - our landing has a small step that always felt steeper when I was pushing the chair over it, but now we just zip over it - and across thresholds. On the last one, she had rubber knobs attached to the rims on the outside of the wheels to help her move it, but we got rid of those because she's good enough at propelling it without them, and that also allows those rims to be closer to the wheel. The back wheels are a bit farther back than previously, and I'm not sure how good at moving it she is, because she hasn't had many chances to do so. I keep forgetting to ask if she gets around in her classroom, because that's where she would try to move the most. It's also a tighter fit in the van, naturally, because the chair is bigger, but it still fits, so that's nice. Mia looks a lot more comfortable in it, naturally, because her feet aren't almost touching the ground.

Of course, I took pictures:

So that's the saga of Mia's new chair. Next: the saga of Mia's new bed!!!!! (Yes, Mia lives through many sagas. She's like a Valkyrie!)

Saturday, February 28, 2015

I am ... Mia's impacted colon

As you might recall, Mia has had issues with constipation since her accident, because she doesn't walk, so her insides don't move things around as well as they should, and therefore things get blocked up. Recently, her issues have gotten worse, which is too bad. We took her to the gastroenterologist in late December just for a regular check-up, and the doctor was very concerned with her "impacted colon." Yeah, you never really want to hear that phrase in conjunction with anything, so it was a bit distressing. Her scoliosis is making her constipation worse, because her spine is bent so badly that it's crunching her colon a bit, so that solid waste moves through it even less easily than it used to, which is not a very good thing. So we had to take steps!

The first day, we gave Mia an enema. If I live to be 200 years old, I never want to give anyone an enema ever again. It wasn't even that awful, but it was very awkward and the entire concept of it was just terrible to comprehend. People actually give enemas for a living? That's cray-cray, I tells ya. Anyway, we gave her a lot of MiraLAX, a lot of suppositories, and we tried to clean her out. After that we tried to ease back on it a little, but enough to maintain her pooping. Her gastroenterologist, whom I have seen far too often over the past two months, wants her to poop every day, which is never going to happen, I'm afraid. So she wants us to be really aggressive about giving Mia various aids, and I'm not as comfortable with it. The problem is that for whatever reason, Mia will not poop for several days (even with MiraLAX and suppositories) and then over the course of a few days, she'll basically never stop. It's awful, and then the cycle begins again. With the MiraLAX, her stool was getting softer, and because of that, it wasn't as obvious when she had pooped, so the possibility that she would sit with it in her diaper for a while came up, and that leads to urinary tract infections and just general messiness. We've had to dump her in the bath tub quite a lot in the past two months because it's pointless to try to clean her up any other way. That's not a lot of fun when I'm home alone, let me tell you. I would love for her to poop every day, of course, but I'd rather it be every few days and be a fairly well-defined stool rather than every day of mushiness. I don't think the gastroenterologist agrees.

So we've been trying to find a balance. I go back to the doctor, she tells me to try this and that, I try this and that, and it works with varying degrees of timeliness. One problem is that Mia's new food, which isn't a milk-based or synthetic formula but blended food, seems a lot easier on her stomach, so she doesn't act as uncomfortably constipated as she used to. Back in the day, you could tell when she was struggling to poop, because her stool was fairly hard and she would strain a lot. These days she doesn't seem to mind being constipated, and I imagine her stool isn't causing as much difficulty even if her colon is impacted. That doesn't mean it's healthy, of course, but it does mean that we tend to forget that she's probably constipated - we have a lot on our minds, after all, and when she doesn't act like she's uncomfortable, we don't think about her constipation. It's Saturday morning, and she hasn't pooped since Tuesday, but she seems fine. We're still trying, of course, but it doesn't feel like it's as much of an issue.

The latest thing we're trying is oral suppositories, which I didn't know existed. She took her first one last night, so we'll see how that works (in conjunction with the MiraLAX, of course). One reason why her gastroenterologist is so obsessed with her constipation is because of her upcoming back surgery (about five weeks away, yay!). The pain meds she'll be on cause, you guessed it, constipation, so the anticipation is that her problems with only be exacerbated. I'm not so sure, though, because if her bent spine is partly causing the severe constipation, that presumably won't be a problem after the surgery, as her spine will be, you know, straight. So while the meds might cause constipation, if we remove one factor from what's causing it and add another, it should be a net sum of zero, right? So she'll still be constipated, but about as bad as she is now, which I don't think is as bad as the doctor thinks. But we shall see. We're crossing our fingers that the surgery will be a boon to more than her sitting position!