Mia eats her hair

God, it's annoying. Her hair is down to the tops of her shoulder blades, and we'd love to not put it in a ponytail, but if it's not, she's constantly eating it. We keep threatening to, in the words of Krys's mother, "give her a plicky!" If you don't know what that is, it's a short haircut. I suppose we should be thankful she has nice hair - when she was in the hospital they shaved her bald. But it's frustrating. She's going to get a trichobezoar. Then she'll be sorry!

Anyway, Happy Easter if you're into that sort of thing. I just thought I'd let y'all know about Mia's hair-eating, because it's bizarre (it can't taste good, can it?).

Why is Mia talking to her hand?

Yeah, that's a puzzler. She holds her hand up in front of her and just babbles to it. We think it's cute (of course, everything she does is cute). We asked her speech therapist about it, and she was interested. She said Mia might be starting to play pretend and that the hand might represent something outside of herself that she's talking to. She suggested we get her some hand puppets. Anyone else out there whose kids spoke to their hands? The mind of a child is wondrous to behold ...

The BIG MOVE

Mia moved into her big-girl bed yesterday. We finally got it where we wanted in her room and Krys got the bedding on. We needed to attach a rail to it so she doesn't roll out of it onto the floor, and Krys also bought a sheepskin rug to put under the bed in the off chance that she does, in fact, climb the rail and fall on the floor (unlikely, but Krys believes in taking no chances!) She slept poorly in it yesterday afternoon, but last night went fine. We're hoping this helps her sleep better and also helps her get back to sleep better when she wakes up. In her crib, she often got a foot stuck between the bars (the left one, usually) and could not get it out, leading to grumpiness. Now, she has no excuse! Next week when my parents visit, we're moving the crib into the other room for the new arrival. Mia is moving on up!

Santa Claus came in March

First of all, if you're interested in getting a hilarious pirate comic book for free, check out my other blog for details. It's really funny - I promise!

Second of all, it's March, but "Santa Claus" showed up this week. We have been waiting for months for certain items to help Mia habilitate, and this week, they arrived. Oh, the joy!

First, on Tuesday her Augmentative Communication Device arrived. We've mentioned it before on this blog, but I'll tell you some more. It's a device that facilitates communication ("augments" it, you might say), and it's supposed to get her talking more smoothly. She had an evaluation back in October (or November - it was a while ago, to say the least) and they recommended one for her. After jumping through the usual insurance hoops, it came in and I picked it up. It's a rectangular machine that has eight cells divided by a plastic cover on its face. Into these cells you can insert pretty much any kind of picture. On the back is a recording device into which you can speak to match the pictures to whatever it is they represent. Therefore, right now there's a picture in one of the cells of a child eating and the word "eat" written under him (or her - it's kind of androgynous). When you push the picture, a voice says "May I have something to eat, please?" This is supposed to help Mia with 1) asking for what she wants, since she can see the pictorial representation and push the appropriate cell; and 2) learning what the words are that go with that particular picture (or desire). We can also cover up some of the cells to start her off with only two showing, which is what her Speech Therapist recommended. The package included the software to program whatever we want into it, which is apparently a steal, since the software is ridiculously expensive (as is everything in rehabilitative services, apparently). We haven't begun working with it yet, but we'll be checking it out and seeing how to use it over the next days and weeks. More updates to follow!

Then, yesterday, she got her wheelchair. This actually didn't take as long as we thought it would - about three months from measuring her to delivery. It looks like a stroller, but it has a better chair to keep her more secured and upright, and it has a hard plastic tray so she can eat in it if that's what we want. It's good to have something sturdier than a stroller, especially since she'll be going to school in the fall and will probably have to be the chair often. We're hoping she doesn't need it all that long (like a year), but we're at least we're prepared if she does need it longer.

I'll put pictures up when I finish my roll of film. Yes, I should get a digital camera. No, I'm not going into the problems I have with digital cameras. Yes, I have issues with digital cameras. No, I'm not seeking treatment.

Miscellaneous Mia ramblings

Krys's father left yesterday after being here a little over a week. It was good to see him; it's been almost two years since he was out here, and he came at the right time of year (i.e., between December and April, when the weather is tolerable). He's a helpful guy, and he put together Mia's big-girl bed that we bought earlier this week. Krys has yet to put the bedding on it, so Mia's still in her crib, but the transition will come soon! Wally (my father-in-law) also told us that if we ever bought anything ever again from IKEA he would hunt us down and kill us - he wasn't a fan. We also bought a new bookcase for the Demon Child, because she has a lot of books (as do we). We're also moving her old bookcase into the new baby's room (I think - I often get left out of the home decorating decisions). We also bought a new dresser that we have yet to assemble, because she's too big for her changing table and, of course, the new kid needs it. So we're changing her on the bed these days, because, obviously, she still needs to be changed.

(A couple of asides: yes, we're both unemployed and don't have a lot of money, yet we're still buying things. Well, kids don't stop growing just because we have no money, unfortunately - we're going to have to buy a bunch of new clothes for Mia because she's growing like a weed and it's getting summery here - the past few days it's been in the 90s, and it's not likely to get cooler anytime soon. Anyway, we've been spending money, and all I can say is - for a few brief, shining months, we had no credit card balance. Those days are over.

Also, all you parents of young kids out there - you are reading to your kids every day, right? Please do. I get kids in high school who have absolutely no interest in reading, and I believe it's partly because their parents didn't read to them. Mia loves it.)

Okay, back to the miscellany. Her wheelchair should be delivered on Wednesday, which is nice, because we'll have a few months to get used to it before she goes to school. We're still waiting on her Augmentative Communication Device. Insurance companies suck. This past week was the last one for her occupational therapist, who selfishly decided that her and her fiance's health was more important than our child and took a "real" job with actual benefits (if you're reading this, Kristin, I'm kidding!). We'll miss her; she was excellent (well, she still is, I'm sure, just not with Mia anymore). We're still looking for a replacement - OTs are hard to find, apparently. This past week was also her first meeting with her new speech therapist - her previous one, also selfish, had to have surgery so she could walk - the nerve! (Hi, Karen - also kidding!) We got lucky with her new therapist, because she just moved back into the area and is re-building her case load, so Mia was able to snag a spot. STs also, apparently, in high demand. If anyone's thinking about a career - there you go. Her PT, however, is staying right where he is - we have threatened to take him with us if we ever move.

Finally, this afternoon she has started to put some thoughts together, which is a pretty big deal. When she signs, it's usually one sign like "Please," which is what she does whenever she wants something. Today Krys had her on her (Krys's, that is) lap and was helping her drink some juice. Whenever Krys put the glass down, Mia would reach for it. Krys kept asking her "What do you want?" and Mia would sign "Want." Krys would say, "Do you want more?" and Mia would sign "More." Finally, after this went on for a while (parents know what I'm talking about - kids occasionally can be endlessly entertained by mind-numbing things), Krys began saying, "What are you trying to say?" and Mia signed, very clearly, "Want" and then "More" (Krys got her to sign "Please" after that, as well - we want a polite child!). So that was exciting - we're trying to get her to understand the significance of her signs instead of just mimicking us, and this was one of the clearest examples yet. Of course, now we're going to push her even harder. Hee-hee-hee!

Physical therapy with Mia

Mia is getting some physical therapy right now, so I thought I'd post while her evil therapist makes her work (the nerve of the man!). The past few times she's had therapy, he's been making her walk. Exciting stuff. I hold her hands (actually, she holds mine) up in front of her, while he puts his shoulder on her butt and crawls behind her. Then, while I hold her upright, he makes her bend her knees and take a step. She resists the left knee moving, but she's gotten used to it remarkably quickly. She only has to do it twice a week, since it's a two-person job and Krys is, what 23 weeks now, so she's in no shape to be crawling around on the floor.

He also holds her hands while her feet are flat on the floor and her knees are bent. Then, using very little lift, he makes her stand up straight. This is not a fun activity, but it does help her a lot. He then tries to make her fall directly backward onto her butt. As I've mentioned before, balance is very difficult for her, so making sure she falls correctly and becomes inured to it is very important. She actually enjoys falling on her butt these days. We hope she will soon be able to do it on her own.

The last thing he's working on a lot is getting into a sitting position from her side. She knows what to do, but because she doesn't push off from her left hand, it's hard. The initial push is difficult, but once she gets her right hand down, she can work her way up. She doesn't keep her head forward, which makes it harder. That's a challenge.

Just some more fun from the world of therapy! Right now she's standing on the edge of the sofa and he's trying to keep her hips aligned - another crucial step on the way to balance!

Recent milestones for Mia

Milestones are very important for children. More so for brain-injured children. Here are some that Mia has achieved recently:

She has begun turning books around so that they are facing the correct way. She does it pretty consistently. According to her speech therapist, this is a good thing. She is beginning to recognize how things are supposed to be.

We have been fooling around with horns and flutes and whatnot to help her mouth and lips go in the right way. Originally, she would simply grip the mouthpiece with her teeth and exhale, which is an adaptive strategy that isn't really the best way to go. Now she is biting a lot less and forming an 'O' with her mouth, which of course is the way it should be. This will help her form words down the line, since that's still pretty hard.

Progress is slow, but it's still progress!

This is an older picture from this past Christmas. 

Mia in her rocking chair. I take a picture like this every month on the 30th (her birthday). Yes, I'm weird. 

Mia with her occupational therapist, Kristin. She likes the big ball. 

Mia and her physical therapist, Darwyn. He makes her work and she doesn't like it! 

Mia at the Scottish Festival hanging out with the border collies. 

Mia in the oxygen therapy tank. She's much happier than she was when it started. 

Mia in her cheerleader outfit that Grandma bought for her. It's never to early, apparently, to get her interested in Penn State! 

A rush of blood to the head

Mia finished 40 hours "in the tank" on Tuesday - I meant to update this earlier, but it's been a busy two days. "In the tank" is my fun way of referring to her hyperbaric oxygen therapy. Now, I must explain this for those people who aren't blessed with the need to know about oxygen therapy. Hyperbaric oxygen therapy is pure oxygen at higher-then-normal pressure. It is supposed to supply oxygen to the places that need it, because oxygen increases blood flow and does all sorts of good things. It's useful in treating wounds because oxygen rushes blood cells to the area and heals it more quickly. It's supposed to be useful in people with head injuries because the oxygen goes to the brain and fires off the neurons. It obviously doesn't help with dead brain cells, but the cells that are "sleeping" are supposed to go nuts and stimulate activity. It's not supposed to help gross motor skills, but cognitively, it's supposed to be good. I know I keep saying "supposed to" because there's not a lot of scientific evidence that it actually works, just a lot of anecdotal evidence. We debated for a long time about sending her to the therapy because it costs upwards of $5000, but as we researched it, it did not appear that anything bad could happen, and it's only money, so what the hell.

The therapy chamber is interesting. It's shaped like a cylinder, about six feet in diameter and maybe ten feet long. Mia goes in and gets a collar with latex attached to it and a hole in the middle for her head. We put the collar over her head and then we attach a plastic hood to the collar. Air is then pumped into the hood. Adults get a mask, but she did not dig that the one day we tried it. The chamber is sealed and the pressure is raised, and we're off! She spent an hour or 90 minutes at a time in the chamber, and for me, at least, it was ridiculously boring. She's very well behaved and patient, but only if you pay attention to her most of the time - I took a book a few times, but she did not like that one bit, no sir! She wanted you looking at her so you could see how cute she was, and how impressive it was when she started screeching (happily) and of course, she can't sit up and the hood made her even more top-heavy than usual, so I had to keep propping her up. There was a television in there (well, it wasn't in there, but you could watch it through a porthole), but I usually kept it tuned to the Disney Channel, so that was no help. Occasionally other people in there (it fit six people) would bring in DVDs to watch, so that was nice, but usually, it was Disney. More on that below.

We've been watching her to see if the treatment has been working. One of the benefits is that it's supposed to make you sleep better. Check, at least for a while. Mia has never been a good napper (through the night she's fine, but not during the day), but the therapy was helping her sleep for 2-3 hours a day. Of course, the fact that it was 30 miles away and may have worn her out might have helped. One of the unfortunate side effects is that seizure activity might be increased. If the brain is working more, the bad parts are working more too. Over the past three or four weeks, Mia has been having worse seizures, and this is waking her up during her nap, which is kind of a pain. We got her blood taken yesterday, so we'll see next week if we have to increase her medication.

We have seen some positive side effects, or we think we have (again, nothing scientific, so we're in a gray zone here). She seems to be picking things up more easily when we teach her stuff. She struggles with internalizing new stuff (a post for another day) and it seems like it's getting a little easier for her. Recently she also learned how to drink from a straw, something we've been working on for months. She can't pick up a full cup with one hand, so drinking was very hard for her and we were hoping she could figure it out before the ridiculously dry summers we have here. So she suddenly started drinking from a straw a few weeks ago, which means she can actually drink more. So that's nice. Her left hand, which is usually clenched in a fist (with her thumb inside it) has seemed looser, but we're not sure if that's a consequence of the therapy. Like I said, it's tough to judge what the therapy is affecting.

She's done for at least two months now, and we're not sure if we're going back. Everyone else I met there praises the therapy to the skies, and occasionally, progress comes after the first round is finished, so we'll see. There was a woman in there who had eczema and thought it was helping. A woman who had had a masectomy also felt the therapy was helping. A 20-year-old who had been hit in the head with a jet ski a little more than two years ago and was in a coma for a few months had reached a point where it was difficult to tell there had been anything amiss with her. So we'll see with Mia.

As an epilogue, for all the parents out there, what's up with the Disney Channel? Okay, the Wiggles are just weird. The Koala Brothers? What do they do for a living, exactly? Do people pay them for their help? Are they independently wealthy? And don't you just want to smack Mitzi? And are the Koala Brothers the legal guardians of Ned and Mitzi? Ned's a wombat and Mitzi's a possum, so they're not Frank and Buster's kids. As for PB&J Otter, why did they name the first kid Peanut, the SECOND kid Jelly, and wait until kid #3 for Butter, especially when both Jelly and Butter are both girls? And why are they friends with Flick, who needs to be smacked around? And then there's the Higglytown Heroes (if you've been wondering where They Might Be Giants have been, they sing the theme song). EVERYONE in the town is a hero? The bus driver? The stock boy at the grocery? I know we're supposed to make everyone feel good about themselves, but that might be taking it a bit too far. Phew. Okay, I'm done. The Disney Channel - weird stuff.

Pictures of Mia in her many guises soon! Maybe tomorrow, maybe Saturday!