The Daughter Chronicles

Sunday, March 30, 2008

Smart kids and groovy pants!

Item! Mia has learned her last name. Krys has been telling her what it is for a while, but last week she actually repeated it. She's been telling us what it is whenever we ask her, because she's awesome.

Item! Norah has gotten very good at jumping off of things. She's been jumping up and down for some time, but she took her time jumping off of things. Recently, however, she's been getting better. Last week at the play area in the mall, she jumped off one of the blocks, which are probably 30 inches high. When she could first climb up there, she had to climb down, and then she asked me to help her jump. Now, she just goes for it!

Item! Krys bought Mia some new clothes, and when she was hanging them up, Norah looked at one pair of pants and said, completely unprompted, "This cool!" We thought that was quite funny. And yes, they are cool. Here are the pants in question:

So Norah is both athletic and wise. And Mia, as we all knew, is way smart. That's what happens when you have the best kids in the world!

Monday, March 24, 2008

Cutting Mia's meds

In January we went to see Mia's neurologist for a routine visit. While we were there, we asked him if we could begin cutting her medication, because we really don't want her to be on meds and she hasn't had a seizure in three years. He still wants to keep her on one, but he told her that we could start cutting out the other, one milliliter at a time. So we did, and now she's completely off it with no adverse effects.

We're hoping that eventually she'll be completely off the other one, too. That would be groovy. For now, though, we're happy that she's taking less medication. It's never fun to have to medicate your child, but it's really not fun to give her a bunch of different ones! At one point she was on four different kinds, but it's nice that she doesn't need quite as many any more.

Thursday, March 20, 2008

Walking the long road one step at a time

With Mia, everything is slow. We take the long view with everything she does, because even if she really wants to do something, it often takes much longer for the mechanism to do it to stick in her head than with someone else, like Demon Child #2. So we're very patient with her. Occasionally, she surprises us, though.

I mentioned she's on Spring Break, so I've been able to put her on the toilet much more often. We got her toilet seat a while ago, but because she's at school so much, it's hard to get her on it regularly. I told her that this week is just a preview of summer, when she'll be on it far more often. She simply doesn't seem interested in going when she's on the toilet. This is quite vexing.

Yesterday, however, she did go when she was on the toilet. I put her on and strapped her in, then left her alone for a bit. I try to give her some privacy, but of course Norah bothers her and she bats at the shower curtain and tries to reach things she can't reach, so it's not like she's really concentrating on going. I cleaned up some dishes and went back in. As I walked in, I heard a tell-tale plop. Yes, she had pooped ... and quite a bit, too. So there was celebrating all around. I know you're supposed to make a big deal about it, so I did, but it's not like it's going to inspire Mia to do more. I just wanted her to know how proud I was of her.

I doubt if this will help in the long run. But each time she sits on the toilet and manages to go is a small victory. Maybe in a few years she'll actually be potty-trained. That would certainly be nice.

Tuesday, March 18, 2008

Norah: Mistress of Memory!

Mia is home this week on Spring Break, which annoys me, because I never had Spring Break until I got to college. Kids today - so pampered! So I've been running around trying to figure out what to do with them. That's always fun.

Today, they ate a nice lunch, and then I wanted to put them down for naps. Mia, weirdly enough, has slept the past two days - I thought the days of her napping were long behind us, but I think school really wears her out, so she has been enjoying the rest. Norah, as usual, was reluctant to go down for a nap, even though she sleeps fine. She kept wanting to "play kitchen" with her Christmas present. I told her she'd feel much better if she took a nap, and I would read her books (she's particularly keen on The Monster at the End of This Book these days), and when she got up, she could play with her kitchen. She finally acquiesced, and she went down willingly.

Two hours later I went to wake her up. The first thing she said, before she even raised her head off the pillow, was "Play kitchen." She probably dreamed of playing kitchen! I chuckled, because she was single-minded in her desire to play kitchen! Of course, we went for a walk around the neighborhood, then Mommy came home, and she has yet to play kitchen since she woke up. But still - you have to admire her memory skills!

Saturday, March 15, 2008

The annoyance of DME

That's "Durable Medical Equipment," in case you're wondering. We have quite a lot of it.

Mia has wrecked her wheelchair. Well, not exactly wrecked it, because she can still use it, but done some damage to it, to the point that we need a new one. She ripped the head rest part off a while ago, after it had been weakened from constant abuse. Then, a few weeks ago, she kicked the foot plate so hard it broke off. One of the bolts had come out a while ago, and as it uses weird "special" bolts, you just can't order replacements - and believe me, I've looked. So it was already a bit unsteady, and Mia likes to kick, so one day - pow! It was then that we knew we needed to get her a new one. She's had this one for almost three years, and her PT was thinking we would need to get a new one pretty soon, so this was the opportunity.

The good thing is, of course, that we don't need to go through insurance, thanks to Mia's money. Her PT recommended one that he's used for a few other kids and likes, so we looked for it on-line. I talked to her lawyer and made sure that the court would allow us to spend the money on it. We always have to go through the court for everything, and we have to wait for it to be approved. It's always approved, but we still have to wait for the petition, and the court is usually very slow. It's still quicker than insurance!

While I was looking for the price, I noticed that the web site didn't list the price of the base. The seat is one price, but there are three different bases for it - a four-wheeled base, a three-wheeled one, and one that allows you to use it as an eating chair. But the prices aren't listed until you choose the seat, which is annoying. You might think the seat and base would be one price, because it's a freakin' wheelchair, after all, but they're two separate prices, and of course you need a bunch of accessories. The chair we want is over $3500.

Think about that for a moment. I know we don't have to worry about insurance, but that's still nothing to sneeze at. If we did have to worry about insurance, we'd come up against the fact that many insurance plans have a limit to the amount they're willing to spend on DME. On one of our plans, the limit was $1000. Not a lot falls under the listing, but for this, we would have had to spend $2500 out of pocket for something that she desperately needs. I assume some plans have a higher limit, but it's still frustrating.

I mention this because it's tough for people who are not in Mia's somewhat unusual financial state to get what they need for their children. Most people have private insurance and a state plan, but there's always a possibility that the family will have to pay quite a bit out-of-pocket. Plus, the delays as each insurance plan processes requests is annoying as well. Health insurance is a problem for so many people, and it's sad that for kids with disabilities, it's often worse than for most.

For us, that's not really a problem. But I'm often reminded, when we're getting stuff for Mia, how tough it is for so many others. And how we spend government money on so many other things that are less important. That's a fight for another day, I suppose.

Sunday, March 09, 2008

A long overdue story about our field trips to the zoo and the ol' fishin' hole

Three weeks ago (on the 17th of February) we all went to the Phoenix Zoo. It had been a while since we had been there (a little over two years), and we knew the kids would enjoy it. We're trying to take advantage of the small window of really nice weather we have in Phoenix - after Christmas and before April it's not too hot and not too cold - by doing things outside, so we headed off to the zoo! I'm not a huge fan of zoos, but I like hanging out with the family!

The first stop we made was the manta ray tank. The zoo has a big swimming pool with rays and a few small sharks in it, and you can stick your hand in the water and pet them ... if you dare! Norah put her hand in the water a bit, but I'm not sure if she actually touched any. I thought of helping Mia put her hand in the water, but it's very difficult to hold her in such a way that she can, so I just held her where she could see into the water and check out the rays. It's one of the problems with Mia - her attention span is so short that we're never sure if she's actually seeing what she's supposed to be seeing or just ignoring it. All day at the zoo I kept asking her if she saw the animals, and very often she wouldn't even answer, and even when she did, I wasn't sure if she really did see them or was just answering "yes" for the fun of it. Oh well - she enjoys getting out and about, and that's what counts.

We moved on to the giraffes, which were right by the fence and easy to spot. Norah and Krys climbed into a wooden enclosure high off the ground to see them more closely, and Norah, rather predictably, freaked out whenever she saw a new animal. She has that little kid fascination/fear thing with new stuff, so she wanted to see the giraffes but screamed if she thought they were coming too close. I wanted to carry Mia up to the bird's nest, but the stairs were very narrow and there were many people rushing up and down them, and I figured it wouldn't be the safest thing to do. She hung out on the ground, and I kept pointing out the giraffes to her. She was more interested in grabbing the metal fence that ran around the compound. See what I mean about a short attention span?

The giraffe experience established a pattern for the day. Norah would shriek a bit when she got too "close" to the animals, but was still fascinated by them, while Mia would look around at everything else but the animals, and when I told her to check them out, she would look briefly and then look away again. The big cats, naturally, were sleeping, so I don't know if Mia even saw the lions. The rhinoceros was also sleeping, but we think the kids got a good look at it. The mandrills were out and about, looking typically freaky, and Norah liked looking at them. At one point we went inside the monkey jungle, where you can walk along a path with nothing between you and the little buggers. Mia and Norah enjoyed that, although Norah, of course, kept crying because the monkeys were at least 20 feet away, and that's too close! Mia enjoyed the monkeys because they were so animated - again, it's the short attention span thing: if something is moving quickly around, she keeps watching it, but if it stops, she has no patience to keep her eyes on it!

At that point, we had been walking around for about an hour, and we had to make a decision about which way to go, as we had reached a crossroads. We decided to head toward the main pavilion/entrance area, get some lunch, and maybe double back and check out the kids' area. We walked along a path that had many exotic birds, something Mia again enjoyed, as the birds are nice and flashy and tend to make odd noises at the proper times. Mia also saw a gorilla, which she enjoyed. Norah did not see the gorilla, because she decided to have a meltdown.

I do not believe in strollers for kids who can walk. I never take a stroller when I take Norah to the mall, mainly because I hardly ever stay long enough for her to get worn out. I understand why parents take strollers, but I want Norah to 1) be a healthy and active child, which means walking a lot, and 2) get used to walking a lot, because we do want to travel with the kids when they're older, and she's going to have to walk. So I haven't put her in a stroller for well over a year. Krys still takes it places occasionally, and we had it with us at the zoo. Norah, however, does not like to get in the stroller! She began to get a little tired about this time, but refused to get in the stroller. So she didn't want to walk and didn't want to ride. What did she want? She wanted Mommy to pick her up, of course! Krys wasn't about to do that, so Norah had a meltdown. While I showed Mia the gorilla, Krys tried to calm Norah down. We were on our way to eat lunch anyway, so we figured we'd see what time it was when we finished and if we would head back out to the kids' area.

After lunch, it was almost one in the afternoon, so we decided to leave. Krys, having planned ahead, got a zoo membership, so we can go back anytime we want. That's my wife - always thinking! So we didn't feel bad about leaving. The kids had a nice day out, and we knew they were tired. We haven't been back yet, but we'll probably go back in a few weeks. The weather is getting hot around here, so we need to go soon!

A few days later, on the 21st, Mia went on a field trip with her class. They headed over to Red Mountain Park in Mesa to go fishing. Yes, fishing. I foolishly said I would go along with Norah! I write "foolishly" because Norah wasn't feeling very well that day, but of course I couldn't have known that she wouldn't be in tip-top shape when I said I would go. But I was foolish for other reasons, as well!

We arrived at 9 o'clock in the morning, as instructed. Mia's teacher told us that we should get there about that time, because the Fish & Wildlife people put fish into the lake at that time. Yes, they have to add fish to the lake! So we got there and set up shop. The people running the event were nice enough to give us a fishing pole to keep (it's in the garage now), because she'll be back next year to fish again! Unfortunately, her class didn't get there until about 10, and they didn't put fish in the lake until about 10.15. So we were quite bored for an hour, and Norah does not like to be bored! She was pretty good, mainly because she liked the fishing pole.

Mia, unfortunately, couldn't hold the pole all that well, what with her one hand and all. She tried a little, but wasn't all that interested. Norah, however, dug the pole. She liked to dangle it in the water and wave it around. She was not interested in trying to actually fish, although we did put bait on the hook. She also got a hook in her hand! I was casting the line and the hook got stuck in the side of her hand, just by her wrist. She didn't seem to feel it until I pointed it out to her, and then she cried. Once I got it out, she recovered nicely. We hung out for a while and had a pretty nice time. Only two fish were caught, but I think Mia enjoyed herself. Her teachers talked to her a lot, and she always likes checking things out wherever she happens to be. It's frustrating that she couldn't participate more, but she always seems to have a nice time doing what she can. We ate lunch, but then I decided to take the kids home, because Norah was getting a bit cranky. But we still had a good time, all in all. It was a beautiful day, and it's always nice to get out into the sunshine before the temperature starts spiking.

Mia loves getting out and about, and I hope we can do it more often. We're going back to the zoo pretty soon, and we've found some trails that are wheelchair-friendly, so that should be fun. I don't like living in Phoenix, but we have to take advantage of what good things it does have!

Sunday, March 02, 2008

Therapists and their motives

This is Mia in her SWASH device. What, pray tell, is a SWASH device? Well, I'm not sure what the acronym stands for, but it's supposed to help Mia keep her legs from scissoring when she walks - in other words, to keep her legs from crossing midline, which screws up her ability to walk. Her physical therapist (that's him holding her) has been working with her for months to keep her legs straight. Her horse therapist (who is also a PT) suggested this device, so about a month ago we went to see an orthotics specialist and he let us take this home for a while to see if we liked it.

Well, we didn't. It helped keep her legs aligned, but didn't help stabilize her hips, which is why her legs scissor in the first place. Her PT has been trying to figure out a way to keep her hips steady, because she tends to raise her right hip when she steps, which screws her up. She also keeps her hips back, which means if she steps with her right leg she finds it almost impossible to move her left leg because there's too much weight on it. This causes her left knee to collapse, which doesn't do anyone any good. The SWASH is treating a symptom, in other words, and not the cause. Her horse therapist liked it a lot, but I don't think she was working Mia as hard as her home PT does. Plus, her school PT concurred that it wasn't stabilizing her hips all that well. Meanwhile, her OT (occupational therapist) said that when she sat with it on (it's supposed to help you sit up straight), she leaned against the waist belt. Mia can sit up without any help, even in a straight-backed chair with no arms. She does that quite often, and can even use her right arm to grasp things while she's sitting in the chair. Her problem is that whenever you give her any slight thing to lean on, she leans. So the fact that she had something to lean on while wearing the SWASH meant that she leaned.

We took it back this past week, and I told the orthotic guy that if she ever gets her hips stable and still scissors, we could use it, but until then, it was kind of pointless. He agreed, although he did think she should get an ankle-foot orthotic (AFO) for her right foot to keep it from pointing, which she does when she steps. She already has one on her left foot, as I've mentioned before, but her home PT doesn't think she needs one on her right, for the same reason he didn't like the SWASH - it doesn't address the problem with her hips. I have to bring up the right AFO with him, however, because it seems to enjoy some support from others, including her school PT.

The experience with the SWASH has made me think about her various therapists and why they recommend certain things. I'm certainly not saying that their motives are sinister - every therapist she's had has been very nice and has worked with her very well. However, I tend to trust her home PT more than her other therapists, because he's been working with her for almost five years and knows her very well. I also trust her home OT, for the same reason (she's only been with Mia for about three years, but my reasons are still applicable). So even if her other therapists recommend something, I'm not signing off on it unless her home therapists think it's a good idea (this holds for her speech therapist, too, but stuff dealing with speech isn't as "controversial," so it doesn't come up often). As her home PT and I discussed why he didn't really like the SWASH, I speculated on why her horse therapist liked it so much. Now, it seems like a good device for kids whose skills are a bit more advanced than Mia's. It also seemed like it did help her, but only marginally. When we take into consideration the cost of the device (I never asked what it was, but I'm so it's hefty) and the mild assistance, our choice was easy. But why did the horse therapist like it?

I have no idea, of course. I have a theory that says it's a bit easier for her - but I have no proof one way or the other. It's the same thing with getting a right AFO - would it help Mia, or make it easier for the therapists to work with her? Again, I don't know. Her home PT is convinced that an AFO on her right foot would only be a crutch - much like the SWASH would be, we decided - and when we took it off, she would revert to pointing her foot. What he wants is to teach her how to keep her hips stable, which will stop the foot from pointing. The orthotic guy is convinced that putting an AFO on her right foot will help stabilize her hips, and therefore, when we take it off, she won't have a need to point her foot. That's certainly possible.

Again, I don't know if the therapists want devices for her to make their lives easier. If they do, I'm sure it's completely unconscious on their part. Another theory I have is that they want to make Mia's life easier. This is certainly a possibility, as Mia has plenty of problems and I would love to make her life easier. However, now is the time to make her life difficult, in my mind. She doesn't complain about things, she works hard, she's relatively light (we got her weighed at the doctor's last week, and she's at 39 pounds), and she doesn't know any better, as she's only five and her brain isn't complex enough for her to grasp how disadvantaged she is. I would much rather her life be difficult now, when she's five, than when she's twenty-five. Then, she'll be much heavier, she'll know a lot more about what kind of issues she has, and it might be too late to teach her anything. So I don't want to give her any crutches now, because there's still a chance she can live somewhat independently. I don't want her relying on devices that help her out when there's still a chance that she'll learn how to do things herself.

The third possibility, of course, is that it's just a difference of opinion, which is fine. When that happens, I'm going to lean to her home PT. He tended to agree with me, in that he never makes things easy for Mia, and she usually rises to the challenge. She is struggling with walking, of course, because of her balance problems and the fact that it's more comfortable for her, ironically, when she twists to the left. So when he forces her right hip down, her right heel goes down on the ground, which is what we want, and she stands straight up and looks far more balanced than she has been - but of course, this upsets her. It's the way it has to be, though, so we're still working through that. If her other therapists want to make her life a little easier, I don't blame them - she's very cute and gets very upset when she works a lot, so it's easy to assist her. I can't resist the temptation occasionally! But that's the point - she can do quite a bit, and has to learn the rest, and making it easy for her isn't going to help her.

So the SWASH device is back with its owner, waiting for the next kid who needs one. Mia is still working hard, and maybe will get a new AFO soon. And we'll keep making her cry when she walks, because that means it's working!