The Daughter Chronicles

Saturday, August 30, 2008

Six years in

Today is Mia's birthday. Yes, six years ago, she entered our lives and changed everything. I've written about her birthdays before (here and here and here), and I'll write about her birthday party next weekend (it's awfully inconvenient for her birthday to always be around Labor Day, because we either have to have her party the weekend before the date or the weekend after; as her birthday falls on a Saturday this year, it would have been perfect to have it today, but we figured people might not come because of the three-day weekend), but I will say that every birthday she has is a joyous event, as we weren't sure she'd make her first one. And, of course, she gets more beautiful every year:

But we already knew that!

Wednesday, August 27, 2008

And now for something completely different

Yes, it's Norah singing the theme from the Spider-Man cartoon of the late 1960s/early 1970s. I'm stunned she actually sang for the camera - she usually shuts up the instant you point a camera at her or even look at her. She always messes up the lyrics at the point where I tell her what they are, but I'm still impressed that she knows them all. Krys taught them to her after I bought Spider-Man band-aids at the store. Now, of course, Spidey is her favorite superhero! Enjoy!

Saturday, August 23, 2008

Norah is quite the patriot!

As I drove down the freeway the other day, Norah looked out the window. Suddenly she said, "Statue of Liberty." I looked into another lane and saw, on the back of a big 18-wheeler, the aforementioned Lady Liberty. Norah knows what the Statue of Liberty is because she has seen it on a Little Einstein video. I was just impressed that she not only saw the picture, but that she remembered it.

It was cool to hear her say that, and, as usual, reminded me how much she has passed Mia by. I hate to think that whenever Norah accomplishes something, but I can't help it. Still, I'm glad she's taking knowledge from elsewhere and applying it to the world around her. She's been doing it for a while, but this was one of the more obvious examples.

Monday, August 18, 2008

A rite of passage for Norah

This past Saturday, Norah woke up about 25 minutes to six. In the morning. She came into our bedroom and bothered the cats for a while, which woke me up. But I stayed in bed, dozing. I could hear her wandering around, but as long as she wasn't screaming her head off, I was happy. For an hour the world was calm. I finally got up about 6.40 and walked out into the kitchen/family room area to find Norah, who was no longer in the bedroom. Sitting on the floor was my daughter. With a hunk of her own hair in her hands.

Yes, she had gotten hold of some craft scissors that Krys has been using for her cross-stitching and started chopping off her own hair. She looked right at me and said, "Why you cut off hair?" She does that quite often - she knows she's done something she probably shouldn't do, and she mimics what she thinks her parents will say to her. I just chuckled, because I wasn't mad at all - she's a kid, after all, and we're always happy when our kids do typical kid things. I was upset a little because she could easily have hurt herself with the scissors - they're amazingly blunt, which makes the fact that she could cut her hair more amazing, but they're still scissors - but if she wants to cut her hair, go for it, say I. I went back to the bedroom, shook Krys awake, and told her to look at her daughter. Norah followed me into the bedroom and climbed up on the bed. Krys was briefly aghast, but what are you going to do?

We called the salon where the females get their hair cut and made an appointment for later that afternoon. The woman who cut her hair was impressed by how well she actually did, so we told her that Norah was just practicing to be a stylist. She got a cute little pixie cut, and we told her that at least her head would be cool now, as it's bereft of so much hair. She often wants her hair in a ponytail because it's hot on her neck, but that's not an issue anymore! When the woman was done cutting her hair, Norah said, "You look wonderful," which is her way of saying "I look wonderful" (she has some trouble with "I" and "You," which I guess is normal), and we were off!

Of course we chronicled it all with photographs. What kind of parents would we be if we didn't capture all the embarrassing moments of our children's lives for when they're older? So here they are:

Here's all the hair she took off:

Here's her brand new haircut:

She's still a cutie, isn't she? We don't think she's quite sure what happened, but she seems happy with it. We're not sure what this will do to her wavy hair, as when Mia's head was shaved, her new hair was very thick and hard to comb (it still is). Norah has always had thin hair, so we'll see if it grows back thick or not.

So that was Norah's Saturday. It was quite the scene.

Sunday, August 17, 2008

Annual official photographs of the kids

It's that time of year again, when we dress the kids up, drag them to Sears, and force them to sit still long enough to take fancy photographs of them. It's all fun! Actually, the kids do enjoy it, even though they don't always cooperate. The biggest problem is that it takes quite a while, what with all the ordering afterward, and Norah, not surprisingly, got a bit cranky. But, as usual, the pictures came out great. When you have the two most beautiful children on the planet posing for them, you can't help but have nice photographs!

We didn't order all of them, of course, but they gave us a CD with several poses on it. So I thought I'd do like I always do and post some. Enjoy!

Those are nice, aren't they? Of course, Norah did something this weekend that ... well, you'll just have to come back to find out. More pictures will reveal the shocking events!

Thursday, August 14, 2008

The charms of modern America

Today I took Norah to the mall. When I got her out of the car and placed her on the ground, her feet landed right next to ... a used condom. In the parking lot. Of the mall.

I want to move to the country. Like, the outback. Or the Amazon rain forest. Or Greenland. Sheesh.

Saturday, August 09, 2008

The cats love Norah

We got new cats in March, and while one is exceedingly friendly, the other two remain a bit skittish. One of them has warmed up to us, while the other is slowly getting used to Krys even though she still runs away from me. I try to tell her I'm a swell guy, but she's not buying it! However, all the cats - even the freaky one - love Norah. We're not sure why, as Norah isn't all that nice to them. We try to keep an eye on her, because we don't want her being mean to the cats and we don't want the cats swatting at her, but she still treats them as if they aren't living creatures. She pushes down on them too much, in other words, because she doesn't realize that could hurt them. They mostly stay under beds and out of sight, because they're cats and that's what cats do, but I still have to keep an eye on her when they show up, because even though she pets them nicely, she'll eventually push or lie down on their kidneys, and that can't be fun.

The other day, however, she was lying on the floor in the family room. Kiko, one of the cats, was lying next to her. Kiko's back paws were in Norah's face, but Norah didn't care. Even when Kiko pushed on Norah's face, which she did occasionally, Norah didn't care. I thought it was quite bizarre, so I took pictures:

I still can't figure out why the cats like Norah so much. I'm perfectly friendly to them! I love cats! Yet they run away from me. I guess they're those masochistic cats you hear so much about.

Sunday, August 03, 2008

Mia's busy week

Mia had a busy week last week, and therefore I had a busy week. It was the first of the two weeks she has off between the end of summer school and the beginning of the school year (yes, she starts her school year on 11 August, and that's a week later than schools in Tempe start), otherwise known as the two worst weeks of the year. She had two weeks off between the end of school and the start of summer school, but it was cooler here then. Now, it's almost foolish even to go outside, and finding things for Norah to do is hard enough, much less Mia.

On Tuesday the 29th I took her to the hospital. Oh, nothing bad happened - it was scheduled! Why would I schedule an appointment at the hospital, you might ask? Well, a few weeks ago we thought she had a urinary tract infection. The doctor who saw her at the pediatrician's office asked if she or her family had any kidney problems, and I told him off-handedly that Krys has polycystic kidney disease (PKD). He freaked out, as they did not have that nugget in their archives. He immediately ordered an ultrasound on her, even though PKD is a middle-aged disease, so even if she has it, it won't manifest for years and years. Oh well - better safe than sorry, I guess. She went in and got the ultrasound, and didn't really enjoy the experience. Ultrasounds are pretty boring - they put that goop on you and run that device over it, and it takes forever to get a reading. Mia is not known for her patience (she's patient in certain situations, but not in ones where you want her to be), and she doesn't like lying flat on her back, so it was kind of a pain in the butt. But she managed to get through it, and only whined a bit when it lasted a little longer than she wanted it to.

On Thursday (yes, I deliberately skipped Wednesday, but I'll get back to it) we went to a different hospital - this time, Phoenix Children's Hospital, which is where she spent most of her time after her accident. She had an appointment with the neurosurgeon who put her shunt in and gives her botox injections because we hadn't gotten botox in a while and she needed to meet with him in order to start it up again. Her neurosurgeon is a very nice man, and he checked her out and said he'd schedule the botox injections. We also asked him about the fact that her startling has gotten worse. She startles very easily and has a violent reaction to it, twisting around, hyperextending her left arm, and holding her breath while her face gets red. After that she smiles, but it's unsettling. We mentioned it to her neurologist in January, but he said it wasn't a seizure, just a startle reflex. Her reactions have become worse, so we asked the neurosurgeon about it. He suggested we try some baclofen, which is a muscle relaxant and anti-spastic drug. We're giving it a try, but its side effects are tiredness and spaciness, and that's one thing we don't want. Mia was kind of spacy when she was on more seizure medication, and we got her off most of them because of it. So we started her on the baclofen, but we're keeping an eye on her. We'd rather she startles violently occasionally if it means keeping her focused.

Back on Wednesday I had to take her to downtown Phoenix. A few weeks ago she got new ankle-foot orthotics (AFOs). I have written before about her therapists' motives, and her therapists disagreed on whether she should get an AFO on her right foot or not. When she walks, she points her right foot and therefore does not strike the ground with her heel, which is the correct way. She also tends to point the foot outward, which screws up her motion. Her home PT is convinced that these problems can be corrected through practice on her part, and he resisted putting an AFO on her right foot. The AFO locks her foot into a 90-degree angle to her ankle and so takes care of that problem. I was on his side, because I don't want her to use the AFO as a crutch later on in life. Her horse/swim therapist desperately wanted to put an AFO on her right foot, because she was very worried about her posture and her back and figured having her feet planted on the ground would help stabilize her hips, which is where her real problems are. We went back and forth for a few months until I had to get a new AFO for her left foot because her old one was too small. She definitely needs one on her left foot, so I figured I would ask the orthotic guy about getting one on the right foot while he measured her for the left one (he takes a mold of her foot and makes it specifically for her). He told me that if she continues to point her foot, she might screw up the tendons in her ankle. Plus, pointing her foot outward means the bones on the outer part of her foot might need surgery. Once I saw that getting one wasn't as expensive as I feared, I decided to get it. She could use it for a while and if it didn't work, we could always ditch it.

She got the AFOs the day after we got back from Pennsylvania. We also got a wrist splint for her. It's been a few years since she wore a splint, and it helped quite a bit. But once she figured out how to take it off, that was that, and she was done with it. We tried to figure out how to get her a splint that she couldn't take off, but it was tough. I spoke to the orthotic guy, and he got her one that we decided to put on her at night. That's a pain, but it can't do anything but good for her. Then there's the AFOs - she started wearing them and has been since the end of June. I had to take her back because the padding on the left one started to peel off a bit, and it gave her a blister right above her ankle. That's no fun!

The orthotic guy fixed the AFO, which was nice of him. We've been trying to get her used to wearing one on her right foot. She's used to the left one because she's had one for three years, but she doesn't like the right one very much. It stretches her muscles in new and uncomfortable ways, and she gets quite grumpy about it. We had gotten her up to two hours with it on, but then she would start crying uncontrollably until we took it off. Her PT suggested putting it on for an hour, taking it off for ten minutes, and then putting it back on for another hour. We have to get her used to it before school starts, because she has to wear it every day. She's still not liking it, but we're working on it!

Her PT has had some fun working with her. She needs to readjust how she walks with it and with not pointing her foot, but she's done well so far. She does not like standing with both on and tries to buckle her legs when we force her to stand. But it's doing the job of keeping her feet where they should be, and her PT says it has helped with her hips, which is nice. Like everything else with Mia, we're keeping an eye on her, but she seems to be adjusting to it. Anything to help her walk! It's amazing when she stands, because she's so tall. Too bad she can't do it more often.

So that was her busy week. Add to that our weekly visit to Little Gym, which she went to because she was home, and her usual therapy sessions, and she had a full five days. This week is less hectic, but she does have to go to the eye doctor to see if her prescription has changed (she's been pulling her glasses off quite a lot recently, and we don't know if it's the heat or the fact that she can't see as well), and maybe the heat won't be as oppressive (which is probably a pipe dream, but we can hope!) so we can go out to the mall. Wouldn't that be nice?