The Daughter Chronicles

Tuesday, May 31, 2005

And Lo! the testing has begun!

Mia went to the Mesa Public Schools Test Center this morning for her vision and hearing screening. She will probably be eligible to enter the Mesa Schools' Program this fall, so she needs to go through a battery of tests. It was pretty easy - we got there, I had to fill out a short form (paperwork RULES!), we waited for a few minutes until we were called (we were number 2 on the list but went first because we got there before Raymond - take that, Raymond!), and then the testing began!

She aced 'em both. The hearing test was in a small room, where a doctor (I assume he was a doctor - he could have been a random guy off the street for all I know) showed her little toys while another doctor (or his assistant, or even another random person off the street) piped noises in through big ol' speakers. On top of the speakers were small boxes that lit up to reveal small animals (not real, although how cool would that have been?) playing bells and such. Mia was supposed to look in the direction of the noises even though she was theoretically distracted by the toys. Since we have known for a while that she has the hearing of a bat, we knew she'd ace it, and she did. The vision test was even sillier. They pointed a weird contraption that looked a little like a camera at her eyes and it made all kinds of futuristic clicking and whirring noises, and she was done! They said there's nothing wrong with her eyes except that she might have some astigmatism. Krys has it, so it's not surprising. Then there was more paperwork, and we were out of there! The whole process took 45 minutes.

She has another round of tests on 15 June, when the special education people will take a look at her and determine where she fits into the program, and the schools' PTs and OTs check her out for, I assume, her physical liabilities. That will be the fun day, because we want her to be in a place where she can learn how to communicate better, and we don't want her held back because she can't talk. She's very bright, but a lot of placement in classes is determined by how well you can talk. So we'll be advocating heavily on that. We hope we won't have to fight too hard, but you never know with bureaucracies.

Saturday, May 28, 2005

Random things about Mia

Well, Mia said "fish" today. I guess Krys knew what she was doing when she bought the little buggers. Mia was checking them out and Krys said "They're fish. Can you say fish. F-f-f-f-fish?"

Mia said, "F-f-f-ffffsssshhh!"

We both clapped and cheered and generally made a big deal about it, because that's what you do! She was excited about the praise. Knowing her, we'll probably never hear the word again, but she said it!

It's been a while since I've written about the depressing aspects of raising a kid with a traumatic brain injury. There's no use dwelling on it, after all. However, there are some strange things about Mia, I can't deny it.

Her eyes work weirdly. Her vision, as far as we know, is fine. However, her eyes don't track terribly well. If her eyeballs are in the corner of her eyes and she wants to track something, they stay in the corner and she tries to follow them, and then suddenly they snap into the center. It's disconcerting. A woman from the Foundation for Blind Children comes by once a month and checks her vision, and she doesn't think anything's wrong, so we don't worry, but it's weird.

There was something else, but I can't remember. Tarnation. Maybe next time I'll have remembered.

Friday, May 27, 2005

Out and about with Mia

Mia loves going out. She enjoys people. She likes to sit in her wheelchair and gaze up at people, checking them out, reaching out to them, grabbing their hair if it gets too close, and just generally having a grand time. On Wednesday I took her to a high school graduation, and she had a grand time.

I worried about taking her, because it took place a good 35 miles from our house and started a six o'clock at night. She was napping and I woke her up, which made her kind of sad. On the way there she just sat like a zombie gazing out the window and yawning. Car rides wake her up, however (the opposite of most kids, apparently), so by the time we got there, she was her usual cheery self. Many of my co-workers hadn't seen her in a while, and some of my students had never seen her, so that was a treat for them. Everyone falls instantly in love with Mia, so of course they ignored me after some cursory questions about her health and concentrated on chatting with her. The place was very crowded and loud, and I worried a bit about her, since she tends to get freaked out by loud noises, but she was fine. She just sat there and watched the kids in their caps and gowns getting in line and blabbing with their friends. I didn't take her into the hall where the graduation took place except briefly, because I wasn't sure if I'd have to leave early. We stood in the hallway at the rear of the hall, where I could see the kids I had taught over the past few years. Mia ate crackers, Graham crackers, and Nilla wafers and sipped a little water, something she really does not like to do (drinking is a big issue with us). Occasionally there would be a loud noise from the hall, like when some people set off air horns, and she looked distressed, but she quickly recovered. (As for the practice of setting of air horns at graduation - don't get me started. I'm generally irreverent, but there are a few things I think of as solemn occasions, and graduation, weddings, and funerals are three of them. Party later. During the ceremony knock that crap off.)

The ceremony was remarkably short, and we were able to leave at seven. Mia got a little cranky on the ride home, but basically she was fine. Everyone was so jazzed to see her - she casts her spell on anyone who meets her. I am constantly amazed by how well behaved she is. I'm sure it will change in the future, and I'm also sure it's partly because she isn't mobile, but she hardly ever loses it in public (or at home, to be honest, unless she's mad about therapy, but we ignore that). I saw a bunch of younger kids at the graduation running around like demons, and I wondered where their parents were. I'm sure Mia would want to run around too, but I'd like to think I would know where she is. Anyway, she had a fun time, she got a good night's sleep, and I missed the first 45 minutes of the season finale of Lost. Damnit.

I apologize for the lack of frequent posting. Today's the last day of school, so I should have more time starting today. Krys's new job is keeping her very busy, so that's why she's been absent recently. Thanks for your patience.

Monday, May 23, 2005

New shoes and fish

Krys decided we needed fish. For Mia, I guess. So she watch them swim around. I don't know - I just work here. She went out this weekend and bought two teeny-tiny fish. One she called a "Dalmation" because it's spotted. The other is a simple goldfish. They are happily swimming around their tank now, and the only ones who are fascinated by them are the cats, and they're not even that interested. Maybe Mia will dig them. I don't know. I just keep having visions of standing over a toilet like countless sitcoms as we dump them. Krys named them Rocky and Bullwinkle.

My lovely wife also went out to get shoes for the Demon Child. This is always interesting. Since Mia cannot walk, her feet didn't get into standard 90 degree angle position that walkers have. Ever since she got her standing frame, over a year ago, she has been standing in it, partly to help her stand and partly to make her feet go the correct way. She's rarely barefoot because good shoes also make her feet go the correct way. For a long time she only wore sneakers, but Krys decided that this summer she should have sandals (it's really hot in Arizona, in case you didn't know). She bought physical therapist-approved sandals (ones that had a solid base and supported her ankle) and Mia has been wearing those for a while. Krys wanted to get her another pair. Here's where SOCIETY comes in a tells us what we need!

Krys can't find girls' sandals in any color other than pink. She can find boys' sandals in brown leather (I have a pair; I call them Jesus shoes or JC Cruisers - you know what they look like!), but girls' come in either pink or they don't come at all. The other girls' shoes are flip-flops, which Mia doesn't wear. So if you're a girl, you must dress in pink or zip around in flip-flops. Boys get the tough, manly shoes. I couldn't believe that when she told me. She bought Mia boys' sandals - solid, brown, sturdy sandals.

I know I have to get used to marketing to different sexes, and I don't really care if Mia and the new kid reject my attempts to get them interested in sports because they want to be all girly (although I will keep trying, because sports are important no matter what sex you are), but this is strange. She's not even three yet and the stores of America are already fitting her into a niche. The girl needs sturdy shoes, damnit! And not EVERYTHING she wears matches pink, you know! Ridiculous.

Friday, May 20, 2005

The Unbearable Cuteness of Being Mia

Phew - hectic week for both of us, hence the lack of posting. I only have one more week of work, so I should be more consistent then.

A short tale: When the Demon Child naps in the afternoon, once she gets to sleep (it takes her a while, because of the seizures), she does some heavy-duty sleeping. Usually we have to wake her up around 4.30, or she'd sleep well into the evening. So the other day I opened her door, turned off the fan, raised the blinds - none of this usually succeeds in waking her up, but we try. After about ten minutes I had to resort to drastic measure - going in and plucking her out of bed manually and taking her out into the living room. That wakes her up! We went out onto the sofa and hung out while she sucked on her pacifier and blinked her eyes and generally got sorted out. Then she writhed a little in my arms, so I asked her if she wanted to play on the floor. She signed "please" (which is how she says "yes" even though she knows the sign for "yes" and knows what it means, but I guess we should be happy she's polite), so I laid her down on the floor on her side, because I want her to get the rest of the way onto her tummy. I spread her toys out near her head but far enough away so that she would have to crawl a bit to them. Let the playing begin! Well, no. She just lay there, so I got down on my stomach and looked her in the eye and asked her what was up. She was still tired, and apparently a little cranky, because she just looked at me and the lip came out. You know. The LIP. Her bottom lip starts to pout, ever so slightly, as if she's not quite ready to scream, but she wants me to know she's definitely unhappy. I asked her why she was unhappy, and the lip trembled on the verge of becoming a full-blown pout. I petted her head and said everything was okay, and told her there's not much else she could do that didn't involve work, so maybe she really should play. The lip hovered; it could go either way! Oh, the tension! I talked soothingly to her and tried to make the lip go away, and although it was close, eventually it subsided. I got in close to her and tried to make her giggle by tickling her neck with my scruffy face, which usually works, but not today. Despite the lip's receding, she was still going to be cranky no matter what! I told her if she didn't want to sit with Daddy and she didn't want to play, I would force her to sit by herself on the floor. Surprisingly, this news elicited no reaction from her. So sitting it was! We sat for a while until it was time to eat dinner, and the lip hasn't made a reappearance for lo these few days now. Needless to say, even when she was on the verge of tears, my daughter was ridiculously cute. I was trying not to tell her how cute she was while the lip was coming out, because that may have pushed her over the edge. We must take these mood swings seriously! So that's my story. Just so you know.

Monday, May 16, 2005

Mia will be walking soon if we have anything to do with it!

Mia's gait trainer arrived today. Yay! As I have no digital camera, much to the chagrin of someone I know who wants to check out our van, pictures of said gait trainer will be coming once my roll of film is done. The gait trainer is a device that will help her stand and walk. It is on wheels, and it has ankle straps (to keep her alignment straight), a carriage for her hips, a chest strap, and shoulder straps. She has figured out Velcro (world's strongest fastener my ass!), so it's nice that the gait trainer has clasps instead. We are going to let her PT assemble it, since we're stupid (well, I am at least - Krys probably could figure it out, but she doesn't have a lot of time with the new job). We are hoping this will get her moving on the whole walking thing, since she really does get upset by the fact that she's not as mobile as other kids. This will also facilitate my cooking, since she won't be limited to one room in the house as much as she is now (and it ain't the kitchen). Remember, you can suggest recipes for me! Anyway, we're very happy it arrived (less than two weeks after I ordered it - bypassing insurance is a wonderful thing!) and we hope to get her in it ASAP. Updates will follow!

Many thanks to Jon for linking to this blog. His is a good one, also about parenting. Check it out!

Sunday, May 15, 2005

Road trip!

Sorry about the lack of posting - this week we've been busy getting ready to get the house painted! It's getting painted right now! How exciting!

Mia went on a road trip on Friday with the girl who is babysitting her while Krys and I work (only two more weeks for me, yay!). This young lady took her to the school at which I used to work. The strange thing about this is that both my wife and I are banned from the campus (long story, but suffice it to say that the employment did not end well). Now, I don't care about introducing Mia to my old bosses, but the administrative assistant who works there is a wonderful woman who hadn't seen Mia since she was a few months old, so she was very happy to see the Demon Child. We were hoping that my old boss wouldn't infect her with his evil (I'm biased, so maybe that's too harsh a word), but she seems to still be un-evil, so that's nice. Our nanny took her because her sister was giving a presentation, and she wanted to see it. Mia, of course, ignored all that and just wanted to babble, so our nanny had to take her outside for a while. Mia was still a little freaked out by the applause during the introductory section, because sharp, loud noises freak her out a bit. She used to startle at every little noise, but she's gotten better at it. It's weird. We don't know if it's a function of her brain damage or not. It's one of the frustrating things about your first child being "different." We don't know what's just normal kid stuff and what is because she has a traumatic brain injury. Do loud noises freak every kid out? What's the deal, parents?

So she had a grand old time visiting my old school. According to my old boss, she's welcome back anytime. Presumably if she can get there on her own, that is, since we are still banned.

More soon, I promise!

Tuesday, May 10, 2005

Mia's IFSP meeting, plus she gets a new OT!

Yesterday was Mia's Individualized Family Service Plan (IFSP) meeting, which she has every few months (it's supposed to be every three months, I think, but it varies). At these meetings as many of her therapists as are able show up to discuss her progress with her support coordinator from the Division of Developmental Disabilities (DDD), who coordinates (wow - fancy that!) her treatment and advocates on her behalf with any recalcitrant (read: pain in the ass) insurance types. Yesterday's meeting was actually well attended - all three of her therapists showed up, which doesn't always happen (therapists are in short supply, and often they simply don't have the free time when it's not their scheduled time with Mia). These meetings are nice, because it allows her therapists to show how she has met the goals they set at the last meeting, but they're also depressing, because they remind me once again how far she has to go.

Her physical therapist is happy that she can sit up almost by herself. He showed me today how he only has to put a little pressure on her left hip when she's pushing herself up from her right side. She initiates that a lot, too, and we're hoping it won't be too much longer until she can actually sit up on her own. (By too much longer, I mean by the end of the year. Baby steps are required with disabled kids.) He has also seen a lot of improvement both in her posture when she stands and in her ability to straighten up. She used to lean forward and push her butt back, because her center of gravity was lower. Recently he's been forcing her to stand taller, and she's been adjusting to that. When he makes her walk (as seen in this picture), she is taking some of the steps spontaneously, which is a nice thing. So she's making progress there.

Her speech therapist mentioned that she would like to see Mia increase her spoken words to 10 or more over the next six months, and her signs to 20-25. She seems to have lost some words over the last six months, which is frustrating, and her signing is sloppy, since she knows that we know what she means. Her speech is something both Krys and I have neglected, and we feel bad about it. We can understand her for the most part, and she can understand us, and as her physical skills are more lacking, we tend to focus on that. That doesn't mean we should ignore her cognitive development, but we don't focus on it as much, and we have to change. We still have not figured out her AugCom device, because it's complicated and takes a long time, which we don't have (yes, yes, excuses, excuses). Her support coordinator and speech therapist mentioned that Southwest Human Development has a tutorial, and they'll come to your house to give it. They said it could be done while her speech therapist is there, so that we can all learn together! I'm keen to get going on it, and I'll find out more about that tomorrow (when her speech therapist is here).

Mia's new occupational therapist showed up as well. She saw Mia for the first time last Friday, and yesterday she stayed after the meeting and worked the child some more. We haven't had an OT in a couple of months, so we're very happy to have one again. PTs, for those who don't know, work on gross motor skills, while OTs deal with fine motor skills. The new OT is right off the turnip truck in terms of experience - I think she said that Mia was one of her first patients. She's very nice and she was working well with the Demon Child, so I hope she works out. It's pretty important for Mia to have an OT, and we're glad this one showed up and that she could come twice a week, since that's what all her therapists recommend. When DDD called and asked if we still wanted twice a week for Mia, I simply chuckled and said yes instead of giving my standard answer - if we had the money, we would pay a therapist to live with us and work her 12 hours a day.

So that's nice. The meeting still depressed me, and I spent the rest of the day in a funk (it didn't help that I'm getting over the flu). People who haven't seen Mia in a long time marvel at how far she's come, but for someone who sees her every day, it's frustrating. She achieves little milestones, and then regresses a bit or doesn't make any more progress in that area. As her PT put it today, once she achieves something, we as care-givers think she has internalized it, but with her condition, it takes her a lot longer to internalize something than the rest of us. So even if she does something a few times, we can't stop reinforcing it. For the most part, Krys and I do reinforce stuff, but we're not perfect, and we forget to reinforce stuff as well, so she loses it. It's a pain.

I mentioned this over on my other blog, and I'll mention it here too. I'm looking for easy recipes that a moron like me can prepare in less than 30 minutes. They should have lots of protein, low carbs (my cholesterol is horrid), and be somewhat light (Arizona in the summertime - 120 degrees in the shade!). Now that Krys is back to work, I feel like I should pick up the slack in the cooking department. It's only fair. You can leave the recipes as a comment or E-mail me. Thanks.

Sunday, May 08, 2005

Mia peed on me

I got her out of bed yesterday after her nap because she inexplicably woke up crying (she does this occasionally; we suppose it's nightmares, because she shuts up the second we walk in) and brought her out into the living room to hang out for a while. I was lying on the sofa and she was sitting on my leg. Then she peed on me. She has done this to Krys too, and finds it quite humorous. She's so evil.

I suppose I should be happy that she's not a boy, since boys apparently pee whenever you take their diaper off. We've been working slowly on getting her potty-trained, but it's difficult since she can't walk. It also take her FOREVER to poop, and whenever we do sit her on the training potty we bought, she doesn't go. Potty training is fun.

I ordered her gait trainer on Friday, so it should be here in two weeks. The wonders of not going through insurance - you just pay, and it appears! How novel and efficient! We're hoping that having her in the walker will not only help her walk (obviously) but speed up her potty training. Because being urinated on is not really fun (except, of course, for Mia).

Thursday, May 05, 2005

Something that may only disturb a father of a daughter

So Mia has discovered how to pick her nose, although she really only sticks her finger in her nostril because she can. She also sticks her fingers in her mouth occasionally and her ear, because she can. So when I've been changing her recently, I noticed that she has also discovered another place to stick her finger. Yes, that's what I mean. I know it means absolutely nothing, and it's just her exploring because she can, but it's one of those things that jolts me out of my comfort zone and makes me realize that some day, far in the future, boys are going to be interested in her. And it makes me realize that I still haven't bought my shotgun.

Monday, May 02, 2005

And What Are YOU Looking At???

Since we now have the van, I have had the opportunity to take Mia out in public in her wheelchair. It is sort of an interesting social experiment for several reasons.

First of all, I've noticed a lot of staring. Mia doesn't "look disabled", so we were able to pretty much be ignored while she was in her stroller. Now, I notice people just staring as if they are trying to figure out what is "wrong" with her. If I meet their gaze, they will usually look away guiltily. I'll admit to an occasional stare, myself. As an example, Several weeks ago I saw a man in a wheelchair getting off the elevator as we were waiting to get on. The stare worthy part was that he had only half a body (from the waist up)--seriously, he was just a torso. It was wrong to stare, but he was strangely fascinating from a "medical miracle" point of view.

If I am in a conversation with someone, I generally don't mind if someone asks politely how Mia came to be in a wheelchair, but I detest those nosy, well-meaning souls who run over to her, and then talk like she isn't capable of understanding what they say. "Ohhhh. What is wrong with the little girl?" I get the idea that these people are the types that spy on their neighbors because they just have to know what is going on. I'm hoping it doesn't happen when she's older, and IS able to understand. I figure I'll get sick of it and start telling them "Nothing is wrong with her. What is wrong with you?"

The second thing I've noticed is that people are a heck of a lot nicer to you when you are hauling around a disabled child. I had sales clerks fawning over her and giving her cookies today. Of course as the prettiest little girl in the world, she should have people fawning over her, so that is OK.

All in all, it has been a positive experience. I think Mia enjoys having a higher vantage point both in the van, and in her wheelchair. I also feel safer in the van. Until the accident, I believed that us driving safely and a carefully researched, $130.00 car seat was enough to keep her safe. Now, I realize that the one thing we can't control is all the idiots on the road who are not paying attention, speeding, and/or weaving around everyone else. I can't help but feel that Mia would not have been injured if we'd had a larger vehicle. This article reminded me of that.