The Daughter Chronicles

Wednesday, April 18, 2012

It's hard to believe it's been nine years

Another year has passed, and it's 18 April again, which means it's been 9 years since Mia and I were rear-ended by a flat-bed tow truck going 60 miles per hour while we were not moving, utterly changing our family forever. As you might recall, I don't like to dwell too much on the accident, but I do like to review the year that was and see how Mia has been doing and where we're going in the future. If you're new here, here's the full story about that rather annoying day.

This past year has been fairly eventful. In May, Mia and I flew to Pennsylvania, where she spent six weeks at the Good Shepherd Rehabilitation Clinic to help with her eating problems. By the time she went there, she had dropped to about 43 pounds (she was 50 inches tall), and things were somewhat dire. We wanted to see if the clinic could help with her eating issues before we installed a g-tube, because we knew there was no medical reason for her not to eat. As I've mentioned many times, we think Mia doesn't eat for a few reasons: One, we're not sure her brain tells her body that she's hungry, so she might not realize it; two, she's constantly manipulated and controlled by others, and eating is the only thing over which she has control, so when we give her the option of eating, she decides not to take it; three, because of the fact that we don't think she recognizes hunger, she tends to eat things just for the taste, and once she's had her fill of the taste (which happens quickly), there's no reason for her to eat anymore; four, she likes things she can crunch and she doesn't like swallowing, so she doesn't like things that don't dissolve in her mouth and fall easily down her throat, like meat and vegetables. All of these factors make for some pretty poor eating habits.

The therapists at the clinic managed to get her to try a lot of different foods and food combinations (Cheerios in gravy, yum!), and she gained a bit of weight while she was there. She also worked well in physical and occupational therapy, and I think the clinic was good for her socially, as well. She's always been a social kid, but she's always reacted better to adults than other kids, because many other kids don't know how to deal with her and other kids react poorly when she tries to pinch them (adults know that she's unable to express herself in other ways and realize that it's not personal, while kids, naturally, take it very personally). She doesn't often pinch other kids, mainly because she pinches people when they're doing stuff to her that she doesn't like and kids don't do that, but occasionally she'll reach out and pinch a kid. At the clinic, however, they had a lot of kids from different age groups and different ability levels, and Mia seemed to do fairly well with those kids. Some of the kids were not special needs kids, they just had severe broken bones and needed to rehab. Others were lower-functioning than Mia was. It was good mix.

She had to leave school a month early and we were away from Krys and Norah for six weeks (they came out to visit in June, after Norah's school year was over), but while this bothered Krys (who missed her baby), Mia tends to roll with adversity like that. She was very happy to see Mommy and Norah when they visited, but she was more put out by the fact that she couldn't watch as much television as she wanted to. We returned in late June and got to work trying the various strategies the therapists worked on. They did a lot of interesting things with Mia, and for a few months, it worked very well. Mia actually got up to 48 pounds before she decided, once again, that eating was for suckers. This is part of the problem with her - as her issue isn't medical, it's behavioral, she can make up her mind about things and she doesn't respond to reasoning. Mia doesn't understand the consequences of her actions, so telling her that she'll have to go to the hospital doesn't really affect her (she knows enough to dislike the hospital, but not enough to let it guide her actions). So in October through the end of the year, we tried to get her to eat again, with no luck. Finally, we decided to put her on a g-tube. We didn't want to, but it was really our last hope. We've been dealing with her eating problems for years, and ever since her hip surgery in 2009, it's gotten much worse, and she had dropped back down to 43 pounds (at about 50 inches by this time). She had no energy, she went to bed far too early, and the stress of trying to get her to eat was affecting everyone.

In January (the 13th, in fact) we got the g-tube put in, and the difference has been remarkable. She's up to 53/54 pounds now, and she's far more energetic all the time. It's still exhausting being Mia, because she spends so much energy just sitting up, but at least she's getting more calories and she doesn't have to go to bed quite so early and when she wakes up in the morning, she's not a zombie. She's doing better academically at school because she has more energy, but one of the unfortunate side effects is that she's more of a pain in the ass, as well. She's getting more obnoxious and she's pinching more, so we have to deal with that more. Her teachers have figured out how to discipline her, but because her short-term memory is so bad, it takes a lot of repetition to get things to sink in. She's getting better, but she's still acting poorly more often than she has in the past. That's what happens when you have more energy!

Once she gets up to 55 pounds, her gastroenterologist will probably want her weight to stabilize, so we won't have to fill her up so much with the high-calorie drink we pump into her. That's good, because we can still give her some of that but we can also work on getting her to eat solid food. Since January, her intake of solid food has dropped even more than before, probably because she's experiencing a full stomach for the first time and she realizes she doesn't have to put food in her mouth. This gets back to her behavioral problem with eating, and there are therapists who help wean kids off of g-tubes when the time comes. Before we put the g-tube in, I spoke to a behavioral therapist who wanted to help, but I told her I would rather put the g-tube in because her weight was so dangerously low. I know it's a behavioral problem, so we'll probably bring in a therapist eventually, because I really wouldn't like her to have a g-tube forever. That would be annoying.

Of course, a good thing in one aspect of Mia's life is usually offset by something going wrong in another aspect, and this year, it's her muscles. When she got back from Pennsylvania, she was doing pretty well standing and walking (with a lot of help, of course, but still). Around August, however, the muscles in her left leg and hip started getting tighter, and we still don't know why. It's happened before - her muscle tone is always going to be high, and she seems to experience cycles of it when it's higher than her "normal" - but this time, it didn't go away. She began pulling her legs up so her knees touched her chest and cried whenever we tried to straighten them, even the right leg, which has less muscle tone. I thought it might be a problem with her hips, but an X-ray showed that the bones are fine. We started visiting a physiatrist at Phoenix Children's Hospital, and she prescribed baclofen for her. Mia had taken baclofen back in 2008, but it had messed up her stomach, so we stopped. This time, it seems to be better for her, and she's been taking it for about six months. In September we started taking her to a new therapist, who works on teaching her body how to move better, and that's helped too. She's also still doing her horse therapy, which is always a good thing. Her physical therapist is very concerned that if we don't get her stretched out, she might develop contractures, which would preclude her from ever walking. That would suck. So we're being somewhat aggressive about it - her physiatrist put the wheels in motion for her to go through another round of Botox injections, which have helped her in the past. If that doesn't work, she'll probably have to go in for surgery to perhaps remove a muscle. She's gotten better - she can stand in her gait trainer without weeping these days - so maybe we can use medication for a bit longer before we have to take the radical step of surgery, but we'll have to see. It's very frustrating, because several years ago, with the help of her PT, she was able to walk across the room, but now she can't even stand up.

She also got a new wheelchair in the fall. Her old one was more like a stroller, and while she hadn't outgrown it yet, her therapists at school were frustrated because they were trying to get her to stand and transition from the chair to other chairs in the classroom. Her hippotherapist gave us a loaner, but Mia was getting a bit big for it, and I didn't want to hog it, especially when other people probably needed it more than we did and couldn't pay for a new one. So we ordered up a new one, and it's pretty keen. It has a lot of support for Mia, but we can also unstrap everything and let her sit in it unfettered, which we do when she's rocking in it so hard we fear she's going to break it (Mia likes to rock). She's very good at getting around in it, too - when she first started trying to maneuver a wheelchair, she often spun in a circle because she didn't use her left hand, but she's gotten a lot better at going straight (although she still veers to the left). We've been teaching her to keep her left arm (with its splint on) down on the rail of her left wheel so that it provides a bit of a guide. She loves zipping around in her chair, although she gets annoyed when we try to make her go where we want her to go. She's quite clever about turning - she uses walls, chairs, and people to turn, and doesn't care who's in her way!

Her school year has been interesting, to say the least. Mesa schools decided to begin mainstreaming special ed. kids, which is a horrible idea but which is the trend these days. They tried it with Mia, and quickly realized that wasn't the best idea. She's been going into a general ed. class all year, but she doesn't get a lot of instruction there, because it's kind of pointless. The district keeps taking away the good programs they have for special ed. kids, which is really annoying, but they do try to give her a good education (as good as you can get in Arizona, what with the legislature taking away all the money from schools). We've expressed our opposition to mainstreaming Mia, because it doesn't do any good for her, and the school is willing to listen, which is nice. At her IEP meeting recently, we discussed options for next year, and we're still waiting to hear about what the school has planned, but she has done quite well this year, and I hope that we can figure out the best environment for her. Educating neuro-typical kids is hard enough, but special ed. is an entirely different and far more annoying animal.

Doing things with Mia is always a dicey proposition, because she dislikes doing anything and wants to sit around and watch television most of the time. (Recently she's a bit more interested in playing with toys, which is keen. She's even taken to playing with dolls, which shows a lot more imagination than she's ever shown before, and I wish I could somehow film her, because it's absolutely adorable.) We took her to Hershey Park in June, which was all right, and we all went to San Diego in July for the comic book convention - Mia loves going to the con for brief periods, because she likes trying to grab as many people as she can. In December we went on the Polar Express near the Grand Canyon, and she seemed to enjoy that quite a bit. Krys doesn't take her to movies or theater anymore, because she gets too obnoxious. We're going to Pennsylvania in June and we're planning on taking her to the Franklin Institute, so we'll see how that goes. It's frustrating, because some things will really impress her, but her attention span is so short that it's never for very long, and then the familiar refrain of "Watch TV" begins. Sigh.

It's been a tough year in some respects, but she has made a lot of progress in many areas. The problems with her muscles are the biggest issue, and we hope that in the coming months we'll figure something out. She managed to make quite a bit of money last year (we just paid her taxes), which is a change from recent years, when the stock market has been wonky. We keep hoping that the market will continue to much better, because she's going to need her money for the rest of her life, after all. For the past few years, we've been, if not exactly worried, a bit bummed that her portfolio isn't doing better, but 2011 was a good year in that regard. Even though we have fairly good health insurance, it's always good to have her nest egg to draw from if we need to. She's going to need a new gait trainer very soon, and while her insurance will cover it, they might not cover everything. Health insurance is very frustrating, in case you didn't know.

So that's what's going on with Mia. She remains a wonderful child, and she's getting better socially, talking better and with a wider vocabulary, and exhibiting some faint signs of "normal" childhood play and interaction. She'll never be "normal," but if she can interact better with the world around her, at least she'll be able to enjoy something other than watching television. Norah is helping us more and more with Mia, which is great, and Mia seems to enjoy having a sister more and more each day. As always, there's a ton of work we all have to do, but it's always nice to see the progress she's made, even with the setbacks. We always keep in mind that almost everyone in an accident like the one she was in is killed, so it's somewhat impressive that she's still alive. Every day is tough in one way or another, but we just love seeing her grow and learn.

If you have way too much time on your hands, you can read the annual updates before this one: 2005, 2006, 2007, 2008, 2009, 2010, and 2011. Dang, I've been writing this blog for a long time!

Anyway, thanks for reading. I know I've been really bad about updating the blog with any regularity for a while, and it's mainly because I don't want to repeat myself. Mia is working with stuff, Norah is kicking ass in school ... you know the drill. I should write about Norah more often, because she's going through the normal growing pains of a first-grader, but then something else rises up and pushes whatever passes for "drama" away, to be replaced by more "drama." You know how girls are! So I'd like to thank everyone who reads, whether you're new or if you've been reading for seven or so years. I hope it's still interesting!


  • Hoping to see you in PA! Thanks for the update, Greg. It is good to read and see the progress, even if last year had it's challenges. Love the pic of the girls in their PJs on the Polar Express and of you all in front of the mountain (Sedona?). Loved all the pics really....

    By Anonymous Michelle, at 20/4/12 10:50 AM  

  • We're flying in on the 5th of July and leaving the following Saturday (the 15th?). If you want to come up, we'd love to see you guys.

    Yes, that's Sedona. Mia's OT got married up there in October, which was nice because we got to take some nice pictures!

    By Blogger Greg, at 20/4/12 1:40 PM  

  • feHello Greg and Krys
    Mia is so beautiful its amazing seeing her now compared to the first time in the hospital,I remember when I heard about the accident I just knew I had to go and see if I could help, when I seen Krys holding that precious little baby so innocence. Mia was crying and crying and she was having trouble with fluid build up on her bain and had but in a shunt in the side of her bain..I remember thinking how can this two people be holding up. Both of them worked like a team they never gave up hope. They kept their cool and maintained in order to provide and make sure Mia got the best care possible, I love you guys, Your my Hero's
    You two have done a great job, Mia is a lucky girl to have you for her parents. Very enlightening to read your blogs and see how far Mia has come even with the sit backs. You and Krys have a beautiful family, Norah is so precious so sweet looking. Take care and keep up the whatever it is your doing because it's working, Mia looks great!!
    Janet Elkins

    By Blogger Janet Elkins, at 23/4/12 5:51 PM  

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