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Thursday, September 29, 2005


Okay, yesterday I met with the occupational therapist at Gus's kindergarten. Turned out to be a sort of general-information, get-acquainted thing. When he learned to walk and talk, is there any possibility of vision or hearing problems, allergies, whatever. Then she went up to meet him and he was very...himself. Little Mr. Sunshine has gotten progressively moodier and grouchier, but he may just be growing into his personality. When he's in a Mood he glowers at the floor and hunches his shoulders, and Robert says he can very clearly remember doing exactly the same thing at that age.

Interesting side note: one of the main reasons it took Kilian so long to get diagnosed is that I was always making excuses for him, the crowning one being: "Oh, it's not a problem, I did that when I was a kid too." So now it's apparently Robert's turn to say the same. Makes one wonder. Anyway, we are skeptical, but we're agreeing for the time being to work with the therapist, just in case. We made a mistake with Kilian, and we'd rather not repeat it.

Anyway. That was that. If Gus does see a therapist, it won't be what you're envisioning, lying on a couch and talking about the digger we wouldn't let him have when he was two and how it scarred him emotionally so now he doesn't think he can commit to a serious relationship with any plastic toy, ever. She'll have a group of kids, and they'll all troop off together for an hour or so on Wednesday mornings for some slightly-more-structured play. And it will happen within the kindergarten day, so it won't be Yet Another Thing I Have To Remember, which is good, because I'm already past capacity. So okay. We'll see.

I talked to Mom last night. She sounded much better, much more cheerful. She saw a doctor yesterday, and he thinks that the tumor in her back, while it's not growing, is pressing on her spinal cord, which is why she's losing some motor control in her legs. She's taking, um, Dexamethecin (sp?) 3x/day to shrink the tumor back and return some sensory-whatever. But she still has to get a wheelchair, which she is cheerful about because it's much easier than having Jerry half-carry her around all the time. And a hospital bed in the living-room, because she keeps scooching down on the couch and can't really get herself back up.

The methadone was knocking her out, but they've adjusted the dosage, so now it's controlling the pain but she's staying alert, so that's better. Her moods are evening out a bit, and she's getting physical therapy and occupational therapy. She probably won't get better enough to walk again, at least not to the point of not needing a wheelchair, but she is getting to a situation she can live with. That's a relief. And if she can avoid any kind of infection while she's still so weak, she probably won't die anytime soon. All good news.

But it does mean we have to start worrying about money. As I understand it, she has to spend down her assets before she can qualify for disability, and then she has to be on disability for a whole year before she can get medicare, which is getting slashed by the stupid government anyway. And disability doesn't have any kind of health insurance to it, and if you can afford health insurance you don't qualify for disability. So if you're too sick to work, you can't have medical care for a year. What the hell? She has something called "COBRA" under which she can get health insurance for $600/month for 18 months after she quits working, so if the disability paperwork gets done in time, she should qualify for medicare about when the COBRA thing runs out. But still, that's $10,800 she'll have to pay for health insurance over the next 18 months, and the way things are working now, she gets her prescription or therapy or whatever and then her insurance decides what it will cover and what it will not, so it's going to wind up costing quite a bit more. At the moment I don't know what to do about this, but I'm thinking about it.


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