The Daughter Chronicles

Wednesday, February 26, 2014

The cyborg-ization of Mia continues apace!

Back in December, Mia saw her orthotic surgeon and he didn't like the cut of her jib. By which I mean, he thought her back was bending in a way that was not completely copacetic. I wrote about this two posts down (man, I really need to update the blog more often, don't I?), but it's useful to remember. He was concerned about her scoliosis, so we made an appointment with the orthotic guy who crafted her AFOs (for her legs) and her wrist splint (for her wrist). In January, we headed downtown, where he put a body sock on her, marked it up with all sorts of lines to indicate where things would be, and sent me away. A few weeks later, Mia's brace was ready!

The brace won't fix her scoliosis, according to her doctor. It can arrest the bendiness, but it's not going to straighten her spine. We just hope that it won't get worse at this point, so for now, we'll see what happens with the brace. It's very hard to put on - as Krys has pointed out, it's much like a corset, but I would bet the materials used for it are much tougher, so wrapping it around her, even before I start tightening it, is a chore. Once I get it on her, I need to make sure it's down far enough. The orthotic guy cut a hole in it so that her G-tube button can be accessed, and the hole needs to be in the right place so the button is exposed. This is harder than it sounds. Mia, as you might recall, does not like straightening her legs even a little bit, and the brace comes down right to where her legs bend. To get it a bit lower, I need to lay Mia on her side and tug down on the brace while trying to keep her body immobile. Yeah, it's hard. It tickles Mia, though, so at least she doesn't whine about it. Even though I get it as far down as I can, the button is still very close to the bottom edge of the hole in the brace, so I have to call the orthotic guy and ask if he could make the hole bigger, because if the brace rides up at all (and given Mia's predilection for rocking back and forth in her chair, it's a strong likelihood it will), the edge of the hole will push against her button. It's a thin layer of rubber, so it will either pull the button completely out (which is a possibility but unlikely) or it will get between the button and her skin and rub, causing a lot of irritation. No fun at all!

Mia has been wearing the brace for a few weeks, and she seems perfectly fine with it. It forces her to sit up straight, which makes the people at school happy, because when they're hooking up her G-tube to her button, she can't bend over and make it difficult for them. Obviously, she can't put her head down on her tray, although recently that hasn't been a problem - she's much more energetic than she has been in the past. Today was the first day I put her AFOs back on - the orthotic guy told me to give her about a week to get used to the brace - so she's looking more like a cyborg today than ever. But if it keeps her back from getting more twisted, that's the way it has to be!

She also got weighed at the doctor's office yesterday, and she's up to 53 pounds, which is a 3-pound gain since October. So that's nice.

Anyway, here are pictures of her fancy new brace:

Those last two pictures show the hole through which her G-tube runs pretty well. With the buckle there, it might be dicey to cut the hole bigger, but I'm sure it can be done!

Next in the cyborg-ization of Mia? I'm trying to get a fully-functioning exoskeleton that would allow her to walk, but I'm not sure if that's feasible.

Wednesday, January 29, 2014

Art for the masses!

I decided to volunteer at Norah's school in the "Art Masterpiece" tutorials that they do. Across Phoenix, school districts have for years participated in "Music Masterpiece" and "Art Masterpiece" classes that the parents teach. The parents are trained and then they go into classes every other week for 20 minutes and discuss a piece of music or a work of art. They can talk about whatever they want about the art - they can focus on the artist and his/her world, they can talk about color, they can talk about the school of art in which the painting fits, or they can talk about the techniques the artist used. We leave the print we have in the classroom until the next session so that the kids can check it out on their own time. I don't know what they do with the music stuff, because it's hard to leave that lying around.

Norah has been checking out music and art since kindergarten, of course, but I was never involved. Earlier this school year, however, the principal mentioned that they were having trouble rounding up volunteers for the Art Masterpiece portion (the music goes in the fall, the art in the spring), so I said I'd give it a go. In November I went to the training sessions - three two-hour sessions over three weeks - and last Friday, I went into the classroom for the first time. Originally, I volunteered for the third-grade class that Norah is NOT in - they had a volunteer for that - but over the course of the past month or so, apparently the parent they had for Norah's class couldn't do it, so I told them I could do both classes. Fun!

I went to the other class first. The print I was talking about was Pieter Bruegel's "The Harvesters' Meal" from the mid-1500s. I began by telling the kids a bit about the 16th century and humanism, which I'm sure went right over their heads. Oh well. I talked a little about Bruegel, but I don't want to go into the artists' lives too much. When I was talking to one of the admins in the office who's done this before, she said the kids always want to know if the artists were married and how they died. I said that since they all had horrible personal lives and they all died of syphilis, this would be a problem. So I tried to deflect them as much as possible - I honestly couldn't find out how Bruegel died, so that was that. One girl, I swear, was totally trolling me - she wanted to know how he died, how many kids he had, and how many pets he had. I did tell her he had two sons, but I didn't know how many more kids he had, and I told her it didn't really matter how many pets he had. I know plenty of the kids in there, so I had some fun with them. I hope they learned a little bit, at least.

Norah's class got Renoir's "At the Concert," so I spoke a bit about Impressionism and what Renoir and painters of his ilk tried to do with their paintings. I also know a lot of kids in Norah's class, so I felt pretty comfortable with them, too. Surprisingly, they didn't care how Renoir died, which was nice. I talked to them about where they thought the ladies in the painting were (this was before I told them the title), and one girl answered that they were on a wagon, which I thought was a bit odd. We talked about texture and how Renoir tried to make that evident in the painting. They were fun - I don't know how much they absorbed, but I figure if they get a bit of it, that's probably good enough.

I enjoyed it quite a bit. I still love teaching, and at Norah's school, the kids are a bit more respectful than at other schools, plus the teachers have already made it clear that they need to shut up and listen, so I don't have to do the hard part of getting them to behave. I made them laugh a couple of times because I said "crappy," which I probably shouldn't have, but oh well. I freaked one girl out because I said "Hell" - as in, painters prior to Bruegel's era tended to paint stuff depicting Heaven or Hell - but if that freaks kids out, they need to toughen up a bit. Some of the kids spoke out of turn without raising their hands, but it wasn't too big a deal. The first teacher was impressed with the volume of my voice - I can get loud when I want to! I didn't yell, but I did speak loudly - that's just the way I am, man! Overall, it was fun. I'll have to see if they learn much over the course of 10 weeks (which is how long the program lasts).

Next up: van Gogh and Cezanne! Will I talk about van Gogh's ear (which, I'm sure, will be the only thing they remember)? We shall see!

Sunday, December 22, 2013

Mia's medical mayhem!

So just when I was going to sit down and write about Mia's follow-up visit to her orthopedic surgeon, something else happened. It's never dull with Mia, unfortunately!

After Mia's hip surgeries, she had to see the orthopedic surgeon every so often for X-rays so he could make sure everything was well. Last October, they told me I could wait a year to see him, but when I called for an appointment in November, they told me I should have been back in six months. THEY LIE!!!! Oh well. So a few weeks ago, I took her on her standard pilgrimage to Phoenix Children's Hospital to see the doctor. We have been concerned about her high muscle tone and what we should do moving forward, because we want to make sure that she's still able to stretch her legs even if she doesn't stand that often. If you don't stretch, your muscles get shorter and eventually, you can't stretch them even if you want to. As much as Mia sits all day, we still want her to be able to stand in a stander every once in a while, but it's still very hard to stretch her legs and we wanted the doctor to take a look at that.

He took X-rays of her legs, but when he came in to see her, he thought it would be a good idea to X-ray her back, too. Everyone who works with her has been concerned about scoliosis for some time, so we've been keeping an eye on it. It had been a while since her back had been X-rayed, though, so the doctor sent her back to the imaging room! It turns out he was wise to do so - her back was at 45 degrees, which I guess is bad? It sounds bad, doesn't it? (Hey, it's called the Cobb angle! What do you know?) He wasn't as concerned with her leg muscles, because a lot of that comes from the scoliosis. I do need to call her physiatrist and talk to her about her Baclofen amount - that's the medication that relaxes her muscles. Her physiatrist has talked about a Baclofen pump, which releases it steadily into her body, but I'm not sure if she weighs enough for one. Her orthopedic surgeon also mentioned that the pump is as big as a hockey puck and it's attached to her gut, so it actually makes scoliosis worse because kids sit oddly when they have one. So I'll have to ask the physiatrist about increasing her dosage and seeing if that makes a difference. The orthopedic surgeon also mentioned that her neurosurgeon (she has a LOT of doctors!) could perform a rhizotomy, which would destroy some of the nerve roots to lessen the spasticity of her muscles. But that's something we'll have to discuss with him!

The scoliosis, though, concerned her orthopedic surgeon. He mentioned that she's too short to get rods in her back, and I'm not sure if we would do that anyway, because it sounds awful. For now, he suggested a soft back brace, which will at least slow the degradation down for a while. I've made an appointment with the guy who fashioned her AFOs and her hand splint, so in January, she'll be heading off to get more body armor. Soon she'll be Robocop and all our crime prevention problems will be solved! Until someone comes up with a way to replace bones and tendons with robotic parts, Mia is going to have issues. I also called the people who made her wheelchair, because you can modify a chair to help alleviate scoliosis. I'm not sure if they'll be able to modify this one or if she'll need a whole new chair, but we'll see. I'm sure it will be the latter, because of course it will.

All that news was annoying enough. Then, this past Friday, I compounded the problem. I was getting Mia ready for school and I sat her up in bed to brush her hair. When I do that, she always pulls her legs up because it's more comfortable (that whole stretching thing, you know). This makes her unstable, as you might imagine, and it's always hard to brush her hair when she's swaying so much (even though she holds onto the railing on the side of the bed). On this morning, she was more unstable than usual, and so I did something stupid: I put my hand on her left thigh, right above her knee, and pushed down a little to stretch her leg. I've done it before, and usually there's no problem. However, this time she screeched really loudly, and I knew something was wrong. She calmed down, and I figured it was just an unusually tight muscle spasm and she'd be fine. I got her to school and told the nurse that she wasn't feeling great. The nurse called before they sent her home and said she was still screeching when they got her out of her chair and tried to change her. So when she got home, I put her in bed and let her relax. We could tell that she was still uncomfortable, but we figured we'd let her sleep on it, and if it was just an aching muscle, it might feel better in the morning.

On Saturday it wasn't much better - a little, but not much - so I took her to the emergency room at Phoenix Children's (it's not the closest hospital, but since they have all her records, we take her there if time isn't a big constraint). They X-rayed her and found ... a broken tibia! Yay! Yes, I actually broke the top of her shinbone, at the back of her knee. As you might imagine, I'm feeling quite awful right now. I mentioned when she went to the endocrinologist that he was surprised she hadn't fractured a bone yet because her bone density was so low, and of course, a few months later, she fractures a bone. We've been working on getting her off the medication that caused her low density, but it hasn't been long enough for her bones to recover. So she fractured a bone. Oh joy.

They put a cast on it and told me that she needs to see the orthopedic doctor in a week, because it might be healed by then. Or it might take another week. Either way, she's still unhappy, but at least her knee is immobilized and presumably it's healing. The good news is, of course, that it's Christmas break, so she's not going back to school until the 6th of January. That means she can just lie around in bed or sit in her chair, and we don't have to move her too much. She can chillax and heal without worrying about going to school and moving around too much. I hope that by Monday the 6th she's either out of her cast or almost ready to get out of it. That would be nice.

Logically, I know that it was probably a matter of time before she had a fracture. That doesn't relieve my guilt at all. I feel terrible, even though I had done what I did many times before and I didn't push her leg very hard - I know that her leg doesn't stretch very well, so I don't push down on it very hard at all. I just wanted to stabilize her a bit while I brushed her hair, and she got unlucky (I know, Mia's unlucky - how shocking). I'm very upset about it.

We're getting her onto different medication that won't mess up her bones as much, and we're hoping that over the next year or so her bones can get stronger (bones don't get stronger forever, so we're hoping they get stronger quickly in the next year before they slowly start to get weaker). In the meantime, we're hoping this fracture heals quickly and well.

Man, I feel bad for Mia. She's too awesome to have to deal with this!

Saturday, November 30, 2013

Mia's new chair!

You might not think a new chair is all that exciting, but you'd be so very, very wrong. Mia sits around a lot, so she needs a good chair that's comfortable, keeps her sitting up, and is movable. It needs to be big enough, too, as she's still growing (slowly but surely). She had a chair for probably 6-7 years prior to a few months ago, and we desperately needed a new one, as she was quickly outgrowing that one. Here she is in her old chair:

That last picture is part of the reason we needed a new chair. Not only was the chair getting too small, but Mia had abused it. She hates sitting back, because it stretches her hips (very marginally, but enough to annoy her), so she likes to sit leaning as far forward as she can. So she tends to lean or even lie down on the tray quite often, and the chair wasn't equipped to keep her head and torso back. All that leaning put a lot of stress on the tray, and eventually it snapped. We duct-taped it as well as we could, but it still wasn't too strong, and the Velcro that attached the tray to the chair was getting weaker and weaker. So we started looking for a new chair.

We wanted a chair that moves, obviously. We wanted one that could not only recline, but rotate. If the back reclined, that would be great, because then she would get a bigger stretch in her hips. But it would also allow her to slide her butt forward a bit on the seat, even if she had a pommel in the center to block her crotch. She would still be able to wriggle down a bit. So if we could recline the back and then tilt the seat backward, gravity would force her butt backward. We also needed a chair with a butterfly strap across the chest to keep her from leaning forward. Even if she was leaning back and tilted back, she'd find a way to lean forward. So we needed a strap. So we started looking.

It didn't take too long - chairs for special needs kids are fairly abundant - but we did have to go through a few to find everything we needed. Finally we decided on one, and we ordered it. It was, I should point out, $4400. No, that's not a misprint. Special needs stuff is spendy! But it got here, and we put that sucker together. Here it is:

You can see all the stuff in these photos, including the tilt to the seat in that third photograph. Here's Mia sitting in it:

The first one is just her sitting in the chair. You see the strap in the second picture, and in the third, we strap her foot because she tends to splay her leg outward to relieve the stretch on her hip. We want to keep her leg as straight as possible, so we strap her leg down. The seat doesn't lean backward or tilt backward quite as much as we'd like, but it's pretty good. She likes it, too - it's much higher than the old seat, so I think she feels more in charge. It's also easier to move than the old chair, which is nice. It takes up more space than the old chair, but that's a small price to pay.

It's always ... well, not exactly "fun," but nice, I suppose, to get new equipment for Mia. We're always trying to make her life as easy as possible, and the new chair does help quite a bit.

Wednesday, October 30, 2013

Norah went to Disneyland ... again

Earlier this month (over Fall Break), Norah and Krys visited Disneyland, which would make it the third time Norah has gone. I think it's as much for Krys, who never went when she was a kid, as it is for Norah. I don't have a lot to write about, because I wasn't there, but I thought I'd post some pictures of their trip. I do know that Norah went on the roller coaster at California Adventure (the one with the loop), which I thought was pretty cool, and she even went on the Indiana Jones ride at Disneyland, which I also thought was pretty cool. She's getting a bit braver, that kid!

Look, no commentary! Just nice pictures. Everyone likes nice pictures, right?

Monday, September 30, 2013

You know what's no fun? Orthodontia!

Norah has entered the brave new world of orthodontia, as her dentist recommended she go see an orthodontist before she hits puberty because the alignment of her jaw was way off. He also suggested we take her to an ENT because her septum isn't as straight as it could be, but we haven't done that yet. One thing at a time!

So we took her to the orthodontist, and they pointed out that her jaw needs to be widened. The middle of her top row of teeth and the middle of her bottom row are way off, and her teeth aren't coming in straight because there's not enough room for them. Before they go with braces, they wanted to put the widener in. This is the thing that you have to crank twice a day to push the device farther apart. Fun! Norah got it in a few weeks ago, and it's already having a noticeable effect. She didn't mind it too much, but it does hurt occasionally. Plus, she's eating even less than her usual tiny amount because it's a pain to chew stuff and a lot of it gets stuck in the device. She's maintaining her weight for now, but we're hoping she starts eating more because this thing is going to be on for a while. The doctor said it should be on between 3-6 months, depending on the effect. Man, I hope it's on the short end of that spectrum.

She's adapted to it pretty well - she has a raspy lisp when she talks, but it doesn't bother her too much, and she was slurping a lot in the first few days because it was causing her to drool a little. But she adjusted to that, and she does it rarely now. She still has some trouble talking, but she's getting better at that, too. It's no big deal - I think her teacher talked about it in class so that no one picked on her and so that individual people didn't ask the same question over and over, so school has been fine. She sleeps fine, too, so that's cool.

We kind of knew she'd need some form of orthodontia even years ago - we could see it coming, and both Krys and I needed adjustments, so it's probably genetic in some way. Mia could stand it, too, but the dentist said it would be more cosmetic with her, and she doesn't care about that, so we'll probably skip it. We're just hoping this fixes the problem and she won't need braces. Now those are annoying.

The first picture is the device in her mouth. The second is her school picture, which was taken the week before she got it installed. The third picture is from this morning. Note the difference in the diastema as the device does its work!

Sorry about that last picture. Norah was being goofy and just leaned back on the sofa. She wouldn't stand up. That's just how she rolls!

I'll have to post some "after" pictures when she gets it off. That should be interesting.

Wednesday, September 18, 2013

Mia's new van!

Mia got a new van. That's the good news. The story behind it, naturally, is long and torturous, like so much in Mia's life.

We decided we needed a new van for a few reasons. Mia is getting taller, so she didn't fit in the old van quite as well as she used to. She still fit, but it was clear that she would soon outgrow the van. She's also getting (in tiny increments) heavier, and while I could still lift her into the van and lift her wheelchair into the back, it's been a long time since Krys could do it, and that means that it's been a long time since Krys has been able to take her out anywhere by herself. So we wanted to get a van that had a ramp, so we could wheel her right in. That shouldn't be too hard, should it?

Well, we found a place that modifies vans for handicapped people, and visited their showroom. They were very nice, and they showed us a nice van with a ramp that comes out of the floor and doesn't fold. We wanted a Toyota Sienna, because the old van was a Sienna and we never had any problems with it. Krys looked around on the Internet and we decided that it was probably the best one to get. So the first place showed us a Sienna, and it was dandy. We told them to write up an estimate, and they said that would be fine.

But it took them a while. They eventually sent an estimate over to us, but it took some time, and we got a bit frustrated. This was in March (maybe April), and they dithered for over a month. In the meantime, we talked to Mia's lawyer about getting a court date to ask for the money we needed to buy it. During this time, they told us we'd probably need another estimate from a different place just for comparison. We found another place and went out there in June or so.

The salesman showed us a Dodge Caravan with a rear-entry ramp and a Sienna with a fold-out ramp. The fold-out ramp is cheaper, because it's not electronic - you just grab it by hand and flip it out. The Caravan was cheaper, but when we looked at some of the stuff on-line about it, the only good thing about it, it seemed, was that it was cheaper. So we asked him to write up an estimate for the Sienna with a fold-out ramp. That came in almost $10,000 less than the first estimate. Both of them factored in our old van, which we were trading in for about $6,000. So that seemed to be that.

We went to court, and they naturally approved the cheaper van. I didn't have a big problem with it; the in-floor ramp would be more convenient, but it wasn't worth the $3,000 more for it (the rest of the difference in the estimate came from the fact that the first place made some more modifications in their vans, which seemed to us a bit superfluous). So we told the second place that we were going with them.

The second place installs a lock on the floor of the van into which you slot the wheelchair (onto which they bolt a cylinder that slides into the lock), and they needed to do that after they got the van. So I paid him (if I have to buy a car, I love just handing over a check instead of worrying about financing), picked a color, and waited. A few weeks ago, he called me and told me the van was arriving the next Monday. Oh joy! Then, after the weekend, he called with bad news. On the way up from Tucson, the truck carrying the van (and several others) was caught in a dust storm, the like of which we often have here in the desert. Unfortunately, some kind of stone hit the back window of our van and shattered it. Yikes. He told me they were going to fix the window and I could bring Mia's wheelchair out so they could install their lock and also take a look at the van. So I drove out to the dealership (which is about 40 miles away from our house) and checked out the van. It was dirty, but other than the shattered window, it looked okay. He measured her wheelchair and found out they didn't have a big enough bracket for the size of her chair. Of course. But he said they'd fix the window, the part would be there in a few days, and all would be well. Yeah.

He called me the next week and said that once they got the van washed, they noticed that the exterior was pitted with tiny dents, and that it would cost a lot to fix it (not my money, of course, but his insurance company's) and it would take a while. I was a bit peeved, because I paid for a new van, but before I could ask for a discount, he said that his company had the exact same van, in the same color, in their store in Las Vegas, and that they could ship it down here. This one, he said, had an in-floor ramp, but his company wasn't going to charge us the extra few grand because it wasn't, after all, my fault that the van I paid for had so much damage. I said that was dandy, and once again settled down to wait for the van to be delivered. Of course, that weekend (not this past one, but the one before) was very rainy in Phoenix, and I kept having visions of another dust storm blasting our even newer van as it came down from Vegas. That would have been fun.

The van made it, though, and last week we finally got it. It took a few days longer to install the lock in the floor, but I didn't care - I wasn't about to tell him, but we could have used our old van for a few more months. Even though Krys can now take Mia out places without me, it's still pretty hot here and Mia doesn't like it at all, so we're probably a few months away from the weather being nice enough for Krys to go out with her. Still, it was cool to get the van. It seems like it's bigger than the old Sienna, but that might be an optical illusion. The second row of seats is gone, so Norah has to sit way back in the back, and I feel like she's in a different ZIP code when she's back there. She likes it, though, because the seats are a bit higher than in the old van, so she doesn't need her booster seat anymore to see out the windows (when she turned 8, legally she could have stopped using the booster seat, but she kept it so she could look outside). We got a bunch of straps to tie Mia's chair down, so that's nice. She needs to be angled a bit toward the middle of the van because her legs are so long that she still doesn't have a ton of room, especially because she hates bending her knees. But it's way easy getting her in and out! Plus, we have free SiriusXM radio for a year, and I'm trying hard not to become addicted to the "80s on 8" station. Damn you, SiriusXM!!!!!

So that's the saga of the new van. Now, some more pictures!

Here's another photo of Norah in the cavernous back seat area.

Here's a weird mountain man wheeling Mia onto the van. Much easier than lifting her, I tells ya!

Mia sits in the van. She seems happy about it, but who can tell with her? She gets backed into the van and then turned around the lock on the floor (see the next picture).

This is the lock into which we slide her wheelchair. It locks the chair but allows it to swivel. As you might expect, the straps to tie Mia down will come in handy, as the chair tends to move a bit when centrifugal forces work on it. That ain't cool.

The lighting in this photo isn't great, but this is looking out the side with the ramp. You can see the lock on the floor in the foreground.

Once again, the shadows aren't great, but this is the opposite view, looking into the van up the ramp.

We're happy so far with the van. It drives smoothly, and it seems to have more power than the 2005 model. It has some bells and whistles - I don't need the rear-view camera, but whatevs - and the design is a bit different (not in a good way) from the old model (there's nothing between the two front seats, while the 2005 model had a storage space there - in this one, the cup holders come out of the dashboard), but it's still nice to have. Now I just have to remain unaffected by the SiriusXM. Can I do it????

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!!!!