The Daughter Chronicles

Friday, August 30, 2013

This one goes to eleven

Today is Mia's eleventh birthday, and while I don't have much to say about it, I will say that while it's certainly a milestone, I consider every day Mia is alive a milestone, so this just happens to mark the amount of time she's been on this earth. Obviously, there was a time when we thought she might not make her first birthday, much less her eleventh, so we're very glad she's healthy and happy and enjoying herself as much as she can. She still learns so slowly it's almost glacial, but she does learn, and we can tell she knows more than she did, say, a year ago. The fact that she's less limber now than she has been in the past is still vexing (it's been vexing for two years, which is when her muscles suddenly got even tighter than they had been and has kept her from walking or even standing too often since then), but she's in a stander more often these days and we hope that will continue to improve. Basically, I just wanted to note that it's her birthday, and we're very happy she's still around to make our lives brighter.

Saturday, August 24, 2013

Back to school with the Burgas kids

School started on Wednesday, 7 August, so the girls have been back for two-and-a-half weeks, and things are going well. In both situations, they've had to adjust a bit, but they're both doing fine.

Mia has a new nurse, so she had to get up to speed on all the fun things we have to do with Mia. This year we started feeding her slowly over a longer time, hoping that it would allow her stomach to drain the food as slowly as it does and keep it inside her. We've been doing that all summer, and it's worked pretty well - it takes 8 hours to feed her, but she hasn't puked in a while. For school, she needs the pump with her in a backpack, and they have to make sure the line doesn't get caught anywhere, and so far, it's been fine. They also need to mix in the Duocal we've been adding to her food, and that's been fine, too. The nurse was a bit concerned about sending her home with the pump still running, because she wasn't sure if the aide on the bus would freak out if it clogged and started beeping, but that hasn't been a problem. Either she's finished with two boxes of the blended food before they put her on the bus, in which case they just unplug her and send her home, or the bag hasn't clogged. I told the bus driver that if the bag clogs, she can just turn the pump off and I'll deal with it when she gets home. So all is well on that front. She has gained a tiny, tiny bit of weight - according to the doctor, it's about ½-1 pound in the past month (I'm not sure of the exact number), but it's a bit, and for now, the doctor wants to see if that will continue. We shall see.

She has the same aide and same special ed. teacher as last year, but a new regular ed. teacher, whom I haven't met yet, so I don't know what's going on there. She spends so little time in regular ed. that it's not too big a deal, but I have to go in and check things out soon, because I do like to know. She has a new PT and OT (I'm not sure about the speech therapist), and I've met the PT and explained a bit to her about putting Mia in her stander almost every day (she gets a break on Tuesday). So far, so good with that. She's also eating a bit more at school than she is at home - she's in a phase right now where she will eat almost exactly nothing at home, but at school they're getting her to try a bunch of different stuff, usually old favorites that she's been avoiding for a while (goldfish crackers, peanut butter and jelly). Whatever, say I - if they can get her to eat anything, I'm a happy camper. I'm not sure why she refuses to touch food at home, but I'm sure she'll get over that soon enough. She always does.

Over at Norah's school, third grade (!!!!!) has begun, and Norah is doing fine so far. They've been reviewing a lot, so she hasn't learned too much new stuff, but they're working on reading comprehension in heavier doses than last year, so that's a bit new. Norah is good at reading and she usually understands everything, but she also hasn't learned how to dig through a paragraph and find answers - so far, the questions have been in chronological order, so the first answer can be found in the paragraph before the second answer, for instance. There have been a few that haven't followed that pattern, and they've thrown Norah for a loop a bit. She's figuring it out, but it's still early. She, like a lot of kids (I assume), doesn't like answering "Why?", so when I ask her why she did something, she struggles with it, and when it's on her homework, she struggles with it. But her school work is fine, so far - she's gotten some work home already, and she's doing well.

She is no longer in the same class as her long-time friend/bully, the girl who has hung out with her since kindergarten. The girl is amazingly self-absorbed, so I don't think she realizes that she's being a bully, and she's also larger (both taller and wider) than pretty much everyone in the third grade, so I don't think she knows how intimidating she can be. Norah was great friends with her until she started asserting herself - not in a bad way, just that she didn't always want to do what the other girl did, which pissed the other girl off - and then it became a weird love/hate thing. Norah still plays with her on the playground occasionally, but they're no longer in the same classroom, so we hope they'll slowly drift apart or the girl will realize she can't be a bully. It's weird, because her parents are very nice, but she's an only child and they spoil her, so she doesn't really get it when someone says "no" to her. Norah is still not as confident as we'd like, but she's also not a pushover, and this girl doesn't really know how to handle it. I'd love it if they could be friends, but I'm glad that Norah has been able to stand up to her. Norah also is frustrated with the lack of rules on the playground, because she's a girl after my own heart. The kids like to play Tag, but they also like to simply run around and a lot of them call "time out" whenever they feel like it, including when they're about to get tagged. This frustrates Norah, and I told her that she could explain to them that before they play they need to set up rules. She's tried it, and some of them are on board, but some of them are not down with it. I told her that if she doesn't want to play if they don't want rules, she can do other things at recess. I know I liked rules when I played games as a kid, and I don't know if it's something that just evolves as you get older and just running around like madmen isn't that fun anymore. I don't know if Norah is an anomaly or if she's ahead of the curve, but I hope she keeps it up, at least because it helps her be assertive. We'll see.

So that's the first few weeks of school. It's always fun seeing what they do at school, and I'm always looking forward to seeing what they teach Norah as they go forward. Third grade was fun for me, and I hope it's fun for her. Mia is in her last year of elementary school, and I hope she does well. So far she's been very happy, which is always nice.

Monday, August 05, 2013

I am ... what's the phrase? ... oh, yes, a HORRIBLE FATHER!

Yesterday I took Mia to therapy, as I usually do on Sunday. When we arrived, I put her in a chair to wait for the therapist. I sat in the other chair, which was on the other side of an end table. I kept an eye on her, because she does fall to the side a lot, but she's pretty good at sitting up. I was also watching because she digs rocking forward, but usually, she rocks only a little bit. Can you guess what happened next?

Yeah, that's right. While I had an eye on her, she rocked forward so far that she fell off the chair onto the floor. BAM! Chin first onto the carpet. She was okay - she cried for a few minutes, but I really think it was more from the shock than anything - and she went through her therapy session with no problems. Of course, she picked up some souvenirs from the fall:

Man, I suck. I know kids will do all sorts of things that will hurt them and I can't keep track of everything, but with Mia, it's a bit more serious, obviously. She's been sitting pretty well for a while, and I had hoped she had realized that she can't rock quite as much as she wants to, but I guess she hasn't quite internalized that lesson yet. She likes to rock, and does so a lot when she's strapped in, but when she's freer, she tends to be a bit more careful. Unfortunately, yesterday she wasn't as careful, and she took a tumble. I'm just glad she didn't knock any teeth out or hurt herself even more. She can live with a rug burn - she appears not even to notice it anymore - but it still freaked me out.

Yes, I'm a horrible father. Pile your opprobrium upon me!!!!