The Daughter Chronicles

Thursday, April 18, 2013

Ten years gone

As I do every year on 18 April, I'm posting today with an annual update about Mia. It has been - wait for it - ten years since her car accident, which is just stunning to me. I can't believe so much time has passed. Am I old yet? If you happen to be a new reader and you're curious about Mia, you can always read up on her issues here. But this isn't about that day as much as it's about the past year of her life. What's been going on?

If you're a regular reader, you probably know some of this, but what the heck, right? Last year at this time she seemed a lot better off than she does right now, unfortunately. She had gotten a g-tube installed in January of 2012, and by April, she had gained quite a bit of weight. She reached a peak of 56 pounds in May, when she went to see her gastroenterologist. All seemed fairly well. But, of course, that didn't last. In late June/early July she started throwing up quite often, and we finally figured out that she was constipated. That was our fault - we weren't paying enough attention, and she was attending summer school, so we forgot to tell them to let us know if she was pooping. We managed to clean her out and all went back to normal for a few months. She was getting a lot of calories and fat, and she was more alert and energetic, and when she went back to school in August, she was working better because she had more energy.

For some reason, in October that all changed. She started throwing up regularly, and we had not idea why. We got her an MRI (the first one in a while) just to check her shunt, which hasn't been operating for several years but might have been messing with her head. The MRI showed that it wasn't her shunt, and it also showed that she has a lot more fluid in her head than normal - some parts of her brain have atrophied because they're not being used, and fluid has filled in the space. It's kind of freaky, actually - if I could figure out how to put the MRI scan on this blog, I would, because it's very weird. The neurosurgeon said that he shouldn't drain her head, because that's just the way her body has responded to the brain injury - the body doesn't like empty spaces, so as her brain shrunk, the fluid filled it in. Draining it might actually harm her. So we left it alone. We also got an EEG, which didn't work out too well - she didn't fall asleep, so it was hard to get a true reading on her brain activity. She's always had seizure activity, even with medication, so we didn't think the seizures were making her vomit, but we thought we'd give it a look.

We've been going to see her gastroenterologist frequently over the past few months, because she's trying new things. First she gave us a thinner formula - not as rich, but also fewer calories and less fat - to try. We were supposed to feed her more often with it, due to that fact that it had less nutritional value in a serving, but that didn't work out. She was still throwing up. She was losing weight, of course, and she couldn't keep her medication down, so this was a bit of an emergency. About six weeks ago or so I weighed her at 47 pounds, which is not good at all. She's currently at about 49 pounds, which isn't much better. The doctor wanted to try a blended food diet, because she thought maybe the formula was doing something to her stomach. We just got that order, so we'll see how that goes. Meanwhile, two days ago Mia was in the hospital for an endoscopy, which can't be any fun. I could have told the doctor she wouldn't find anything, and she didn't - Mia's stomach and esophagus looks perfectly fine. (As an aside, there was at the hospital a couple with a 16-month-old who, I think, was also getting an endoscopy. The mom was pretty broken up about it. I told the nurse after they left that I felt bad for the mom, because she was an "amateur" - I had absolutely no concerns about Mia because she's been through this so often. I was kidding around a bit, but believe me - I'd much rather not have any idea how my kid is going to react to anesthesia and surgical procedures than know exactly how she's going to deal with it!) The doctor did take some biopsies, but I don't think she's going to find anything, because I don't think there's anything wrong with Mia's stomach. I'm convinced that, for some reason, her brain is telling her stomach to reject food - not all the time, just sooner than it would usually. I don't know if that's true, but I hope we can find out. She's going to a new neurologist in May (I don't know if we're going to leave our old neurologist, but I really want a second opinion about her), and we'll see if a fresh set of eyes can see something no one else can.

Of course it's frustrating dealing with her stomach problems, because the less food she gets, the less energy she has, and her schooling has suffered a bit. She was doing very well at the end of last year and the beginning of this year, but ever since she started losing weight, she hasn't had the energy to keep up. It's always the same thing, unfortunately - whenever she seems to make a bit of a breakthrough, something stops her. We're still not sure what's going on with her muscles - ever since August of 2011, she's been struggling with her muscle tone, and she's still not able to stretch her legs straight very well. We've been working with her, and she can finally stand in a stander without crying the entire time, but considering that two years ago she was walking with very minimal support from me and her physical therapist, it's still not good news. We've never been able to figure that out.

Meanwhile, she's gotten really good at moving around in her wheelchair. She still uses only her right arm, and she's really slow, but she usually gets to where she wants to go. She likes wide-open spaces, obviously, because she doesn't have to worry about crashing into anything, but she can maneuver pretty well. She still uses one-word commands far too often, but the good thing is that she's able to use complete sentences if we remind her to use them. She got a new speech therapist late last summer, and she's been working on prepositions and stringing together words with her, and Mia has gotten fairly decent at it. She still gives us the wrong answer when we ask her things, but it's because she's joking with us - we'll tell her that she knows it's wrong and that she should give us the right answer, and she will quickly, laughing as she does it. So her sense of humor is as keen as ever. She's getting a bit better at saying the appropriate thing independently of us - she doesn't always do it right, but she does it more often than she used to. A few weeks ago, completely on her own, she yelled "Idiots!" at a driver who wasn't moving when the light turned green - not the best example, true, because it wasn't very nice, but I didn't say anything at the particular time, and she remembered that I ... um ... occasionally call other drivers "idiots." Whoops. I wasn't proud of her for calling someone an "idiot," of course, but the fact that she used it "appropriately" without mimicking me at that moment was pretty cool. Now I have to get her to say things at the right time that WON'T be insulting. My bad.

As always, we're so happy that she's not dead, because she easily could have been killed. As sad as we are (and we are, almost every day - I've mentioned this before, and it's true; we don't let it cripple us, of course, and anyone who knows me knows I'm usually in a good mood, but whenever I think about Mia, which is often, I can't help being sad), we're proud of Mia because she's had to go through so much and she's almost always in a great mood and she tries so hard in her life. I can't even imagine what it's like to be her - I don't even know how much she understands about her situation, but it still must be frustrating - but she's such a wonderful girl and as annoying as she can be (and she can be), she's always telling us she loves us and she always want to snuggle with her mommy (me, not so much, but that's okay). Norah continues to be a big help - she's far more mature than most kids her age, because we've pretty much forced her to be, and she helps us out a lot. We're still working to make Mia's life more enjoyable and easier, and even though it will probably never be easy, we can still work toward that goal.

So we'll hope that someone can figure out why her stomach isn't working perfectly, and maybe we can get her standing up more often. We're getting a new mini-van soon, because she's outgrown the one we have and the new one will be modified so we can just put her wheelchair in where the seat is. It's pretty cool, actually - we already have an estimate on it and now we have to present it to the court. Her lawyer is moving to a different job, so we'll have to check out a new one (who her lawyer recommended), so we're hoping that transition goes smoothly. She continues to enjoy school even though it's been difficult this year, and her IEP meeting went well and her goals for next year are certainly achievable. She's come so far in a decade, so even though she still can't do as much as we'd like, it's wonderful that we've been able to have the time with her. And she usually makes me laugh at least once a day, so I can't stay too sad even when I think about her.

If you're that interested, I've been doing annual reviews for some time: 2005, 2006, 2007, 2008, 2009, 2010, 2011, and 2012. Yeah, I can't believe it's been ten years, either.

Saturday, April 06, 2013

Mia's stomach problems: Continuing down the rabbit hole (so to speak)

When last I checked in about Mia and her tendency to vomit, she had been put on a new formula (which didn't work) and the doctor had ordered a gastric scan to see what was what. Let's pick up the story there, shall we?

Over Spring Break (the second week in March), I took Mia to the hospital for said gastric scan. They put a radioactive dye in her formula (yummy!) and put some into her stomach and then let her lie there for about an hour while they watched what happened. A few days later, the doctor called and said that, yes, her stomach empties much more slowly than it should. I mean, I could have told them that, but they used SCIENCE! to confirm it. Yay, SCIENCE!

The doctor prescribed erythromycin to help clear her stomach more quickly. Some of you (those who have no actual life, I would imagine) might be thinking to yourself, "But Greg, isn't erythromycin an antibiotic?" Correct you are! However, a side effect of erythromycin is that it's a "gastric agonist," which means it helps the stomach digest things faster. How handy is that? (On a side note, Gastric Agonist was the name of my punk band in college.) One of Mia's therapist's sons (phew!) actually took it a few years for the same reason, and it helped him quite a bit. So we got some erythromycin and fired it up!

Yeah, it didn't work. She had a few days during which she managed to get three complete feedings in her, but over the first week, I think she had two (2) vomit-free days and four (4) with vomit (on the 7th day, I didn't feed her the third time because we had an Ice Cream Social at Norah's school and I didn't want Mia to vomit at the event). So I called the doctor, and a few days ago, back we went!

I hadn't spoken to the doctor about the actual gastric scan, but she said it didn't show WHY her stomach wasn't emptying as fast as it should, just that it wasn't. SCIENCE! She then suggested that we need to slow down the rate at which we fill her stomach. I don't really think her vomiting has anything to do with the speed at which she's getting the food - last Sunday I didn't feed her after about 1 in the afternoon, and she threw up around 5 in the afternoon. She had four hours to digest with nothing going into her stomach, and she still threw up. But I figured we'd give that a chance. More than one person has suggested feeding Mia at night, because then you can do a ridiculously slow feeding and it doesn't interfere with her life at all. We object to this for a few reasons: One, Mia likes to figure out how to take things off, and we fear she'd figure out how to pull the tube out of her stomach. Unlike other kids, you can't explain to her that this is for her own good. Two, I posted these pictures on Facebook a few weeks ago, because they were very cute:

Mia sleeps in a fetal position and moves quite a bit during the night. We fear that she'll do something to the tube running out of her stomach and detach it that way, not even deliberately. So night-time feeding is, we think, out. On Thursday we sent her to school and they fed her very slowly for 5 hours. When she came home I fed her for another 4. She only got ~550 ml of formula into her, which is far less than the 800 or so that the doctor wants. She's only awake every day for about 12 hours (maybe she'll need less sleep if she gets more food, but right now, she really needs it), so basically we'll be feeding her constantly. But we're willing to try. Then, yesterday (Friday the 5th), we got about another 500 ml into her ... and she threw up. Good times! So today I'm feeding her the regular way, which means she's not going to get very much into her. On Monday I'll call the doctor again and tell her what's what.

The doctor has decided to give her a new kind of formula which is just blended food, but we haven't gotten that from the medical supply place yet. She's also going to do an endoscopy to see what's going on inside Mia. We'll see what happens with that. I'm convinced her brain is telling her stomach the wrong thing - maybe telling the wrong sphincter to close so that the food comes up instead of going down. The brain is a weird organ, and who knows what Mia's is telling her body. I think the only way we're going to get her to stop vomiting is the get the neurologist involved. But that's a rant for another day! I'm perfectly happy with the doctor's last suggestion, which is hospitalizing Mia for a few days to check her out thoroughly. Maybe I can convince her that that's the way to go. We shall see!

So, a lot of stuff going on with Mia and her digestive system, and none of it working. Mia: The Perfect Metaphor For The American Government! Whoo-hoo!

(Oh, that was just mean. It's an insult to traumatic brain injury sufferers everywhere!)

Tune in later for ... progress? Wouldn't that be nice?