The Daughter Chronicles

Thursday, July 16, 2009

Norah digs the old-school tunes!

Today I took Norah out to get her hair cut. I was playing music (or "mustick," as Norah calls it) on the iPod, as is my wont. When I turned the car off, Norah told me, "I like that song, Daddy."

"That song" was "Misty Mountain Hop" by Led Zeppelin. Truly, Norah appreciates the seminal stylings in rock and roll. Huzzah!

Thursday, July 09, 2009

Mia's hip saga ends with ... blood!!!!!

Well, there was surgery. What did you expect?

Yes, back in January, if you'll recall, Mia had hip surgery. In the six months since then, Mia has endured pained muscles, even more manipulation by her parents, and of course, the loss of six pounds from a 41-pound body, which had caused us a ton of grief. Well, yesterday she went back to the hospital to get the metal brackets that were holding her hips in place removed. Surgery is awesome!

The surgery was scheduled for 3 p.m., and it was supposed to be an outpatient procedure. Yeah, we weren't sure how that was going to work, even with Mia's powerful recuperative powers (she's always ready to go very quickly after coming out of anesthesia). I got there about 1.30 (which is when I was supposed to be there) after the nurse called my wife to tell that the doctor was running late and I didn't need to hurry to get there. Gee, that was nice. We went back into the dark scary places behind the big doors and hung out for a while, and at 2.15 the nurse said that the doctor was just taking his 1.15 appointment back, so we might be an hour behind. Consarnit! However, about 2.45 the doctor came in and said we were ready to go! Mia went back to the surgery area a few minutes after 3, so that was nice. Usually, I can hang out with her while the anesthesiologist fires up the gas and lets her drift off to sleep, but yesterday they took her back to the Super-Duper Restricted Area before they put her under. She didn't care; Mia is remarkably casual about a great deal in her life, and she just said "Bye, Daddy!" and the doors closed on her. When would I see my daughter again!!!!!!!

About two hours, if you must know. The procedure took a bit over an hour, and then the doctor came out and said all was well. He needed to cut another muscle in her leg (as he did when he first worked on her hips) because the high tone was keeping her from opening her right hip. So she has yet another incision in her groin, which can't be fun. She also has incisions on each hip, which isn't that bad as her original cuts hadn't completely healed yet, so I assume he just cut there. She has bandages on her legs that she needs to keep on for 7-10 days (well, not necessarily those, as we have to change them, but she needs to keep them bandaged), and he said she can't do therapy for 2 weeks or so. Considering that in two weeks we're going to San Diego for a few days and then, when we come back, her PT is going on vacation for a while, it might be while until she has physical therapy again. But that's okay. We need to ease her back into it, and by early August, she should be ready to start working hard again.

I went back to the waiting room and, well, waited. For her to wake up, mostly. She was snoring loudly and seemed in no hurry to wake up, so I just sat there. It's somewhat depressing that I knew the nurse by name and he knew me and Mia, but that's the way it is, I guess. After 20 minutes or so, she woke up and was immediately unhappy. Why couldn't she just sleep for the next three days, huh? She was in pain, but I'm not sure how much of it was the incisions and how much of it was her tight muscles, which, as I mentioned, have been vexing her for a while. I think she was also uncomfortable lying down, so we raised the head of her bed and that seemed to placate her a bit. She kept telling us she wanted to go home, and we made sure she wasn't in too much pain when we transferred her to her wheelchair, so we were off! We made it home a little before 7 p.m. I guess it was outpatient surgery!

We put Mia right to bed, and she's been sleeping quite a bit since then. We have Tylenol with codeine to give her, which is quite the miracle drug. Sleeping really helps her, so we're taking advantage of her desire for it. She skipped school and camp today, and she's barely been out of bed. She has completely refused all food and drink, which is what happened after the last surgery. Yay! Maybe she'll lose more weight! We, of course, hope that she gets back to drinking something soon. We'll see.

You'll notice the photographs interspersed in this post. Yes, that's what the doctor took out of Mia - the brackets that were holding her hips in place. They threw them in an autoclave and gave them to me. The doctor asked me if I wanted them, I said that sounded creepy, but really freakin' cool! So now we have the brackets and the screws. Freaky!

Anyway, she's done with that portion of Mia's recuperation. The hip bone could pop out again, as the doctor warned us, but as long as she exercises it regularly, it should be fine. Let us hope it never comes to that again. Having a kid with a traumatic brain injury is crappy enough. Having a kid with a TBI and hip problems is even worse, if you can believe it! We hope that now she can get back to more intensive therapy, which will cause her to need more energy and therefore eat more. At least that's the plan. Wouldn't it be nice if something went according to plan for once?

Monday, July 06, 2009

Norah goes avant-garde!

Last week at pre-school Norah created this masterpiece:

She's quite proud of it, as you can tell. It really wore her out, too:

Okay, those pictures were taken on different days. The sleeping one was taken last Wednesday, while the painting on was taken last Friday. But they fit so well together!

Norah is having a ball at pre-school. And she's creating art! I've seen stuff hanging in museums crappier than that, I'll tell you that much!

Friday, July 03, 2009

Has Mia turned a corner?

I was going to write a post about Mia and her triumph over yet another person who thought she could feed her. Last weekend I visited Pennsylvania and Krys's aunt, who's a nurse, came to visit to help Krys out while I was away. Tammy was of the opinion that she could get Mia to eat, but Mia stymied her! Yay, Mia! Okay, we shouldn't cheer for that, but it's always fun to see Mia defeat yet another attempt to, you know, keep her alive.

But I didn't write that post right away, and while I was mulling it over, something happened. Mia hasn't started gorging on everything we put in front of her, but she has started to eat a tiny bit more than she has been. Right now she's ignoring her goldfish crackers, but she's been eating them regularly the past two days. She's choked down a few pieces of pierogies the past two days. She ate some nuts this morning. She had a few grapes yesterday and the day before. Of course, we usually have to bribe her to eat them, but considering a few months ago bribes didn't even work ... well, we consider this progress.

I wonder if she's just feeling better. She's probably completely healed from her hip surgery, and she is getting the metal plates on her hips out next week, so I certainly hope she's healed! Once she gets the plates out, I'll feel much better, because then she'll be out of excuses with regard to not working, and she can start walking again. Her PT has been making her stand a lot the past few months, but she hasn't been walking. Once we check out the X-rays of her hips to make sure all is well, I imagine she'll be actually doing some activity soon, which might mean she is hungrier. Plus, as she feels better, I don't think she's as grumpy about being moved around, which puts her in a better mood. Of course, she's back to pinching a lot when she doesn't like something, which ironically is good news, because for a few months after her surgery she didn't pinch, which we think meant she just wasn't feeling very good. She's back to being sprightly!

The doctor's office called with the results of her endoscopy, and they said she has no food allergies and mild reflux, which the Prevacid seems to be helping. So there's that as well - maybe it's slightly less uncomfortable to eat, although it never bothered her in the past, so unless she developed reflux recently, I'm sticking with my theory that her lack of eating is completely her being a pain in the butt. I believe that as she gets back to full health and activity, she'll be back to eating. The problem is, of course, that she was never a great eater in the first place, so getting her to gain weight has always been tough. And now she's even lower in weight, so getting her back to even her pre-surgery level is going to be hard. Oh well - just another fun challenge with Mia!