The Daughter Chronicles

Tuesday, March 29, 2011

Hey! Norah's doing stuff!

Yes, the joys of parenting: Trumpeting to the world whenever your spawn accomplishes something that we all take for granted. That's what it's all about! It is actually impressive to watch someone learn something, because so many connections have to be made in the brain for it to work, so even if we might take it for granted, remember - we were once that little kid. "Sunrise, sunset, swiftly flow the --" You get the picture!

So Norah recently learned how to tie her shoes. It was actually something for which they received a certificate at school, even though they didn't actually learn it in school. I hear a lot these days about how kids don't need to learn how to tie their shoes because of the magic of velcro, but the point is not tying shoes, but learning complex movements and being dextrous. When I hear people say there's no point in learning how to tie shoes, I want to punch those people right in the brain. But I perservere in my non-violence!!!!

Of course, Norah ties her shoes "wrong." That is, she makes two loops with the laces and then ties those together. If you're unclear what I mean, I have video (you knew there had to be video, right?):

This is a bit easier than the "right" way, but, oddly enough, harder to untie, especially if she double-knots them. Either way, she doesn't wear tie shoes all that often, but I'm certainly glad she learned how to do it. When she's a bit more confident I will try to get her to do it the "right" way. Because that's how we did it when I was a kid, dadgumit!

She's working on reading, as well, and although she's doing okay, I don't have video yet. Soon enough we will give her a book cold and she'll be able to get through it. Then, the camera and the pressure will be on! Will she fold like a cheap lawn chair? Only the future knows!

Tuesday, March 15, 2011

Trying to keep up ...

I hate not posting more often, I really do. But I suck. Anyway, it's Spring Break, so I'm dealing with two children, one of whom, as you know, doesn't want to gain any weight, which is a bit stressful. However, I thought something that happened this morning was funny. Norah was drawing something while still in her pajamas, and it was getting on to 11 o'clock. I joked to Mia that Norah never wanted to get dressed, and Norah, indignant, said:

"I'm not sillying off here! I'm drawing!"

"Sillying off"? I LOVE it! Norah isn't sillying off, man, she's seriousing around! She finished her drawing, then got dressed. She has things to do, people!

Friday, March 11, 2011

Yes, I'm back with more of Mia's weight problems, unfortunately

I have a nice post to write about Norah and her accomplishments, but I need to film her doing stuff, so that will have to wait a bit. In the meantime, Mia is still having weight issues, but now they're even worse. Good times!

I mentioned last time that she weighed 47.7 pounds fully clothed, which meant she had lost some weight from January, when she weighed 47.2 pounds with only a hospital gown on. Well, last week I got her weighed with her clothes on ... and she weighed 45.8 pounds. Yeah, that wasn't good. I told the nurse to put us on a waiting list for the doctor in case she had a cancellation, because the first appointment I could get with her wad 14 April, and I certainly didn't want to wait that long. Yesterday they called me and said she had an opening, so I hustled on over.

This time they took all her clothes off ... and she weighed 43.8 pounds (plus she grew two inches, so she's up to 50 now). So since January she's lost 3.6 pounds, which is really, really terrible. She's getting worse, too - we can barely get her to drink one Kid Essentials a day, which is only 350 calories, and often she doesn't even drink all of that. The people at school are having the same problems. Mia has entrenched, and nothing at all gets her to drink. The doctor was just as concerned as we were, and we both agreed it was probably time to stick a g-tube in her ... a "gastric feeding tube," for the laymen. Yay!

A g-tube means surgery - she needs to go in, the surgeon makes an incision into her stomach, and they place a valve on her skin through which we feed the tube into her stomach. The valve looks like the thing on a kiddie pool toy, with a plastic cap that snaps into place over the aperture. She doesn't need the tube in all the time, just when we want to get fluids into her. Her doctor is very worried about her weight loss, so I made an appointment with a pediatric surgeon ... but it's not until 23 March, so I have to wait a week-and-a-half to set up the surgery, which I hope can be done soon after that initial consultation.

The biggest fear I've had about a g-tube is that Mia will become dependent on it and give up eating solid foods altogether. That's still a concern, but I'd rather she not starve herself to death, so it's kind of gone by the boards for now. We can send her to school and they can feed her normally, and when she gets home we can try to get as much in as possible. If that doesn't work (as it hasn't been for over a month), we can hook her up before she goes to bed and pump some calories into her. My concern is that she'll bother it a lot, and she could conceivable rip it out, although it would hurt like hell. Given Mia's obstinacy, I wouldn't put it past her. I'm sure she'll get used to it, but until she does, we'll have to be careful.

Krys is worried because it's surgery (the procedure takes 5-10 minutes, but she'll still be anesthetized, which is always a bit scary), but we are pretty much out of options. Her speech therapist tells us that there are aggressive inpatient behavioral therapies that we can try, but none are in this area, so she and I would have to go to another part of the country for a month or two while Mia lives in a clinic and I go insane from boredom. Plus, who knows if it would work or if we'd be able to continue it after she got out. Plus, who knows how long it takes to get into one of those places, and we don't have a lot of time. Maybe we'll try it later in her life if she's still having problems, but right now, her more pressing need is nutrition, stat!

So I'm sure in two or three weeks she'll have more surgery and yet another thing implanted in her body. She already claims she doesn't want to go to the hospital, to which I reply, "Well, you've had every opportunity to avoid it." Naturally, this fazes her not one bit.

Next week is Spring Break, so I can work on her a lot, but I doubt if it will do much to help the problem. I just hope I can keep her from losing more weight in the next 10 days or so before we see the doctor. it's the challenge!

Boy, I wish I had good news. Norah's doing well! How's that?