The Daughter Chronicles

Tuesday, March 30, 2010

Mia: Into and then out of the hospital!

Mia, as you well know, had to go to the hospital over the weekend. Originally she was scheduled to go in on Saturday, but the doctor had to reschedule, so the procedure was done on Sunday. I had to take her in around 7 in the morning, and the doctor drained her wound and stitched her up by 10.30 or so. Then he came out and told me she had to stay overnight. The wound oozed a bit and he was concerned that it might be infected, so he decided to leave the tube in and make sure it drained completely. She only had to stay in for the night, but it was pretty annoying, mainly because the hospital is really, really boring. Krys brought me another book, which was nice, but Mia was watching the television all day, so that wasn't an option. Her doctor wanted to keep her hips apart, so she was lying in bed all day with pillows between her legs, which didn't make her happy. She got used to it, though, and dealt with it, because she's a trooper!

Her night was rough, mainly because she always has difficulty sleeping in the hospital, and of course, she still had the pillows between her legs. She slept okay although not great, but she stayed in good spirits even without a full night's sleep. In the morning, the doctor took the tube out and pronounced her good to go! I took her home, she hung out for the day, and today went back to school. All is well!

She has a follow-up appointment on Thursday, and we'll see what her wound actually looks like. I haven't seen it; the dressing hasn't come off yet, nor am I allowed to take it off. So I assume he's going to change it on Thursday, and give me further instructions. He wants to keep her legs separated as well, which is not going to happen. At night, we've put pillows between her legs, and during the day, she's sat on the floor a few times with her legs apart, but every minute just isn't feasible. She hates it, for one thing, and if we put pillows between her legs, she'd spend every moment trying to get them out. So we're doing what we can, but the best thing for her is to do lots of therapy. Her doctor says there are no restrictions on her, but we're going to take it easy for a bit - after all, we really don't want another hole opening in her leg! But keeping her limber will require therapy, and keeping her limber is all that the doctor really wants.

She's doing well, though, and she's happy. Isn't that what counts?

Wednesday, March 24, 2010

Mia experiences a setback!

As I mentioned, two weeks ago Mia got her cast off. Life was good! She was nice and flexible, and she had a couple of very good days at school prior to Spring Break. Then, on Saturday (the 13th), I noticed that her incision was open. And when I say open, I don't mean a slight opening, I mean a fairly big hole. When I can see the tendons inside her leg, I consider that a fairly big hole. It didn't seem to bug her too much except when I actually moved her, which was nice, but I still wasn't sure what to do. I called the hospital and spoke to the on-call doctor (her surgeon was in Honduras). He said that I should soak some gauze in sterile water, pack the wound a bit, and then put a dry piece of gauze over it. I got distilled water because, as it turns out, one needs a prescription for sterile water. I got the distinct impression that the doctor and her surgeon's nurse (who called me later in the day) didn't quite believe that the hole was as big as I said it was. I've been dealing with Mia for almost seven years. I'd like to think I don't panic. This hole, however, was a bit freaky.

So we did that for a few days. We kept looking at it and it didn't seem to be infected, so we kept changing the gauze twice a day and hoping it would heal. I took her to her regular doctor a week ago just to make sure I was putting the gauze on correctly. He said I should call the hospital back and have someone look at it, because he didn't want the hole to get any deeper. The deeper it gets the greater the risk for infection, so he wanted to make sure they understood the issue. I called the hospital again and again got the idea they thought I was unnecessarily freaking out. But they made an appointment for the next day to check her out.

So I took her to the office and a physician's assistant looked at her (she was a very nice lady, but I must point out that her last name was - no lie - Stufflebeam). She was taken aback by the severity of it, which kind of confirmed my suspicions that they thought I was freaking out. She called Mia's surgeon's partner, who said to keep doing what we were doing, at least through the weekend until her surgeon came back and could look at it. It still wasn't infected, and Mia was handling it fine - even when we moved her, which is when it hurt the most, she wasn't screaming as much as I thought she would (or I would if I had a hole in the hinge between my leg and my groin). So we waited through the weekend.

I called the doctor on Monday and spoke to his nurse, who told me she'd ask him what he wanted to do. She called back yesterday and scheduled an appointment for today - he obviously wanted to check it out. Today he decided to be a bit more aggressive with it. He's going to drain it on Saturday and, if it's not infected inside the wound, stitch it back up. I was hoping he would do that, because we haven't been able to stretch her or do any therapy since the cast came off, and I fear that her muscles are going to start tightening up again. Simply letting the wound heal by putting gauze on it would take a long time, I imagine, and who knows how her muscles would be afterward. I'm sure she'll have to wait to do therapy if he stitches her up, but I'm sure it will be a shorter healing time than letting it heal by itself.

I hope it goes well on Saturday. I just get so frustrated with the fact that Mia just keeps coming close to being at full health and strength and then something else puts her back. It's been well over a year since she's had a full coterie of physical therapy, even though she's done some work. I hope this gets her healing faster. We shall see.

Wednesday, March 17, 2010

Mia's schooling concerns take center stage

I've been meaning to write about this for a week, but it's here now! Last Monday (the 8th) we had Mia's Multidisciplinary Evaluation Team (MET) meeting, during which her various teachers and therapists discuss her eligibility for special education. As the school psychologist said, there's no way she's not going to be eligible for special ed., but every three years they have to go over it and figure out her placement. This is in anticipation of her Individualized Education Program (IEP) meeting, which will set her goals for the next year.

I thought it might be a bit acrimonious, but it turned out it wasn't. Her therapists agreed that it wouldn't be a good idea to subject her to standardized tests because she wouldn't understand them and wouldn't perform well at them, so they're going to keep track of her progress as they have throughout the year to come up with goals. This is what they do all the time, naturally, but because they need to evaluate her, it takes on a bit more importance this year. The Traumatic Brain Injury specialist for Mesa schools told us they're trying to get her classified as "multiply disabled" as well as TBI in order to get more funding. I'm not sure why she wasn't classified that way originally, but that's nice. So they're tracking her as usual, and won't worry about more formal testing.

It's the same with her teachers, but her main teacher brought up an interesting point. She said that she's been keeping stats on Mia all year, and one day she'll meet a goal, say, 8 times out of 10, and the next day she'll only get it twice out of 10. The TBI specialist and Krys and I all said at the same time that that's TBI kids, and one just has to deal with it. Mia does learn, but it takes her a long time and she usually experiences several setbacks while she's trying to get it into her long-term memory. If she's having a good day, she might do really well on a goal, but if she's having a bad day, she won't. We told her teacher to take an average, as she's tracking her stats each day. That will give her a better idea about her abilities.

Mia is doing fairly well with handwriting, as she works on that every day. We also learned that she knows the Pledge of Allegiance, with was kind of neat. She's working very hard, and the therapists and teachers all had nice things to say about her. We're still concerned about her pinching her teachers, but we're all working on that. The reason I thought there might be friction was because of where they have been talking about putting her - namely, the moderately disabled class instead of the mildly disabled class, where she is now. She really belongs in a class somewhere in between those two, but that no longer exists at Mesa schools, so we chose to put her in the mildly disabled class, which is too fast for her. The moderately disabled class, however, is too slow for her. So there's been talk about putting her in the moderately disabled class, which we oppose. I wasn't sure if that would come up at this meeting, and it didn't, so the meeting stayed friendly. I'm sure it will come up at the IEP meeting, so I hope that can remain civil. That would be nice.

Her IEP meeting is on the 8th of April, so that will be the next time we discuss her schooling. Should be fun!

Wednesday, March 10, 2010

Exciting news about Mia!

I was going to write about Mia's meeting at school the other day (and still will), but I needed to interrupt because she got her cast off today! Yay!

She had a follow-up appointment with the doctor today. I asked him if we could get the cast off next week because it's Spring Break, but apparently he's indulging in some partying himself, because he's going on vacation. So he said, "Why don't we take it off right now?" I was a bit surprised, but I wasn't about to say no to that! So off it came!

She's a bit weak, which isn't surprising. He said her knees will probably hurt for a few days, and she's still having muscle spasms, which aren't pleasant. On the other hand, she had physical therapy today and her PT said that her legs were not tight at all, and her hip was rotating outward very well. Yippee!

So now we have to work her back into shape and hope that nothing else goes wrong. That would be nice. We'll see going forward.

Tuesday, March 09, 2010

Where on earth did Norah get this?

Yesterday, while I was playing tennis on the Wii, Norah told me, "When you lose, you have to say 'Oh, snap!'" Both Krys and I said, "Excuse me?" I don't really have a problem with Norah saying "Oh, snap," even though she's about, what, a decade behind the times, but we have no idea where she picked that one up. School, we're sure, but which kid we don't know. But it's an example of strange things the kids will pick up at school. I know it will get worse, and I hope we can steer Norah away from some of the more objectionable things she will hear there.

We had a meeting with Mia's "team" of teachers yesterday, so I'll write something up about that in a day or two. Oh, snap, I guess that's a tease. Ha!

[Edit: I discovered that she got it from the Madagascar: Escape 2 Africa. At one point, Chris Rock says, "Oh, snap!" She never picked up on it before, which is why I had forgotten about it, but for some reason now she's picking up on it. I still want to ask if some kids at school say it, because according to some women Krys works with, saying "Oh, snap" is the hip thing about the young teen set.]

Sunday, March 07, 2010

The big difference between girls and boys!

Norah has a new swimming teacher and a new level, as she graduated a few weeks ago. She hasn't met her new teacher yet, but I made sure it was a woman. She had a man once, as a substitute, and she screamed the entire time and wouldn't get off the step by the side of the pool. I don't know what her problem is! So yesterday, we asked her what her problem with "boy" teachers is, and she replied:

"Boys are not awesome." Beat. "Girls are awesome."

So there you have it. The battle of the sexes, explained by a four-year-old. It's so easy when you just break it down a little!

Friday, March 05, 2010

More of Norah's smart-assery

As Norah gets older, I expect her to be more and more of a smart-ass. As long as it's not excessive or snotty to the point where she doesn't do what I ask of her, I don't have too much of a problem with it. It's a fine line! This week, for instance, she came up to me and said, "Daddy, I just looked in the refrigerator." I asked what about that, and she said, "There's no milk in it." She meant there was no cup with her milk in it, so she couldn't drink any. I just looked at her and started laughing. Then I told her that perhaps she should ask for milk if she wanted some, and she did. So I didn't care that it was a bit smart-ass.

A few days later, while Mia's PT was here, Norah came over with one of her dolls and asked me to put its hair in ponytails. I told her that she needed to start learning how to do it herself. She said, "I can't do that, I'm only four." Mia's PT chuckled. That wasn't really smart-ass, but it was hilarious. I told her that it doesn't matter that she's four - she should give it a try!

She cracks me up. I know anyone who has kids knows how hilarious young children can be, and Norah cracks me up. Even when she's being a smart-ass!

Monday, March 01, 2010

It's time for a Mia update!

One week later ... how's Mia doing, you might ask? I'm sure you think about her all the time, even though she's not your child!

Mia had a rough week, although she's getting better. She stayed home on Tuesday, Wednesday, and Thursday. It was extremely boring for her, as you might expect. She managed to take a long nap on Wednesday, but on Thursday she didn't appear tired and was much happier all day. We give her Valium for her muscle spasms and we have some pretty strong pain medication, but it seemed to be making her nauseous, so we have been trying to skip that and stick to Motrin, which seems to work. I wasn't going to send her back to school until today, but she was so good on Thursday that I really didn't see any reason why she couldn't go back on Friday.

So I took her in on Friday and spent some time there, just to make sure they were okay with her. They were worried that they wouldn't be able to get her through doorways (she could get through them, with only a little extra maneuvering) and how they were going to change her. As long as they have two people to change her, everything seems to be fine. They have to be careful moving her around and making sure none of the other kids bang into her, but so far that's been okay. They told me she was good in the morning but she wore down as the day went on, which isn't surprising. Mia gets worn out fairly easily, and given the fact that she's not eating very well (since the surgery, that is - we believe she's back to being peeved at us so she's not eating) and she's lugging around a heavy cast (well, not lugging, but it's still weighing her down), it's not surprising she was getting tired. I went by after school to check if she would fit on the bus, and that went well too. So her first day was fairly successful.

Her weekend was pretty boring, unfortunately. She can move around even less than she usually does, and we can't take her out anywhere (well, we could, but it would be a HUGE production), so she's pretty much stuck in front of the television. She'll play with some of her toys, but it seems like she's less patient with them now than she was before the surgery - I don't know if it's just the effort of pulling herself up to a sitting position or what, but she plays with her toys for a few minutes and then tells us she's all done. So the weekend went really slowly, as you can imagine.

Today she was back in school, and apparently everything went well again, and again she hit a wall in the afternoon. She slept in very late yesterday morning, and I think waking her up at 6.45 this morning was something she just didn't enjoy. That's about as late as I can wake her up, though, so she's just going to have to get used to it! She actually fell asleep on the bus ride home, which is a very rare event. We decided to put her to bed about 6.15, so we hope that helps keep her at least awake at school. The teacher didn't say she started acting poorly, just that she was sleepy. So maybe they can give her a break if she nods off. Her muscles are stretched way out and she's wearing a big heavy cast, after all!

She has a follow-up with the doctor next Wednesday, and I really hope he decides when she's getting it off. The following week is Spring Break, and I would love it if she could get the cast off then. We shall see. It's already been a long week, and I anticipate the next few weeks will also be trying. But hey! that's what being a parent is all about, isn't it? At least Krys and I don't have to sit around with our legs pulled apart and in heavy casts!