The Daughter Chronicles

Thursday, August 30, 2012

The big 1-0!

Today is Mia's tenth birthday, so yay! All things considered, we're pretty happy she's made it to double digits. Obviously, she might have died when she was 7 months old, but she's had a lot of surgery since then, and while much of it has been benign, I always get nervous when doctors knock her out and cut her open. As far as I can remember, here are her various surgeries:

2 right after her accident, one to save her life and another to install a shunt;
2 major hip surgeries;
10 (approximately) injections of Botox, which isn't surgery but involves knocking her out and sticking a needle into her;
1 to fill four cavities in her molars.

I know that's not as many as some, but it's far more than a 10-year-old should have to endure. Luckily, she's ridiculously healthy except for the brain damage, so she doesn't get sick all the time or have heart problems or other things. So that's nice.

She started school three weeks ago, and I'll have more to write about that in a few weeks, after I go in and observe (which I like to do occasionally). She's doing pretty well - her weight is down a bit, she still has her bald spot (we're going to take her back to her child psychologist to talk about that), and she's not liking her new leg splint (pictures of that soon!). But overall, she's doing all right.

Parents know that you really can't anticipate how much your life will change once you have kids, and that was certainly true with Mia. Obviously, we wish her life had taken just a slightly different course, but we're grateful that she's alive and usually very happy. I suppose that's all we can ask for!

Here's Mia at 10! Look how cute she is!

Sunday, August 12, 2012

Photographs without commentary!

I wasn't in Disneyland last weekend, but my lovely wife and lovely daughter were, and Krys took pictures! So here they are, without much from me, because I have no idea what was going on when they were taken!

They spent three days at the park and then, last Saturday, went to the circus (hence the picture of Norah in front of the elephant pen). A grand time was had by all! I was glad that Krys got away for a few days, even if it was with Norah (I always tell her to get away without the kids, but she couldn't swing that). She was able to have some fun and not worry about Mia, which is always a good thing. And Norah had a grand old time, too. She didn't want to leave, of course, but she was still happy she went!

School has started, which is swell, so I'll have to write a little about Mia's latest situation - a new teacher and a new aide. We'll have to keep an eye on them to make sure they're doing what they need to do with regard to our wonderful daughter!

Friday, August 03, 2012

Unforeseen circumstances

Last week we noticed something rather distressing: Mia has a bald patch at the crown of her head. It happened at some point last Friday or Saturday, and it was rather sudden. Mia tends to twirl her hair and often pull out strands of it, but this was a pretty big chunk of hair - she has a good amount, and it's thick. We have no idea when it happened or if she pulled it out or if it fell out. Krys wondered if we should get her some anti-anxiety medication, but I don't know if that will help - she tends to get bored and want to do something with her hand, and if there's nothing around, she'll twirl her hair. The only time I can think of her having the time to do this is at night, but she does sleep very well, so I don't know. We didn't find a hunk of hair around, so I fear she might have eaten it ... however, she hasn't choked on anything in the past week and I think she would have on such a decent-sized chunk. It's quite the mystery.

This is one of those weird things you don't anticipate when you're taking care of someone long-term. I'm even talking about parents of "regular" kids - you think you're going to be confronted with certain events, but you don't prepare for all of them. With special needs kids, you have more things to think about, but it's the same principle. So I can reconcile myself with "We're going to be changing Mia's diapers for the rest of her life (or at least until she goes into a home, which she may or may not)" and "My daughter will probably never walk, even with a walker," but I didn't really anticipate having to figure out why my daughter has a big bald spot on the crown of her head. I mean, really.

She won't wear hats, and her hair is too short to comb over it (plus, it's so thick that as short as it is, styling it differently is tough), so her bald spot will be there for everyone to see! The only thing I guess I have to do is explain to her teachers (school starts on Wednesday) that we don't know what's going on with her hair. Now we have to figure out if we can do anything to stop her from twirling her hair. That would be nice. I keep wanting to go to the woman who cuts her hair and say, "Give her the Sinéad!" That's one solution!