Wednesday, October 15, 2008


Links worth checking out:
Frontline. An interesting look at both candidates.
Snopes. Because, that's why.
Divided We Fail. A comparison of the candidates.

I'm not looking to get into any sort of debate, here or anywhere else. (wink) I do believe, however, that there's a shortage of real information as opposed to baloney. So get yourself all informed -- through a variety of sane and reliable resources, please -- and happy voting.


Re: court. We're back in on the twenty-second. I don't know what to say, really. There's technically nothing to tell about the previous date. The twenty-second looks to be what is perhaps the final date in the case as it stands.

Since we're here, let me just offer up some advice.

(Now approaching the three and a half year mark into the re-tooling of our family, I feel I can speak with some authority.)


A friend believes that sex is often the only thing that holds marriages together, through some of those darker times, and that if we were all to avail ourselves of the benefits of matrimony as we should be, we could jolly well allow it to carry us through to happier times. I think she's right. Spot on, as a matter of fact. And hey, since it seems that we all now have no actual money/assets/prospects and therefore no other way to entertain ourselves, go grab your honey's hand (or whatever) and find a room, already.

You can read the rest of this later. It's really not important enough to keep you from your mission. Trust me.

I've been having the strangest dreams lately. In fact, that's probably why I'm up tonight instead of having hit the proverbial hay as soon as Q went down. They've been getting so vivid as to be nearly unbearable. The first night, everything was threatened by some looming evil, plots were thick and it was a challenge to move quickly enough and keep our wits about us. The second night, I dreamed familiar dreams of family, intact, laughing, things fairly historically accurate, highlighted in the Technicolor of remembered bliss. The third, more familiar dreams of love and love lost, recurring nightmares which startled me awake even as I "knew" I had to get back to sleep for some hoped-for resolution. Last night it was back to us picnicking by a river, kids gamboling like little goats while all the grown-ups lolled and chatted, snuggling up into couples, followed with a fierce and breathless, then hilarious, game of tag going on between us all. But there was something dark lurking at the edges of the happy scene and I couldn't see it, no matter how quickly I turned. I had the oddest combination of total immersion in the joy of the moment -- family fun -- and horror at what was coming, though I couldn't quite figure out what that was.

Maybe tonight I'll read until I drop off so I don't have to linger over what will wake me this time...


Q is having an interesting time these days. The neuro appointment resulted in increases in meds (stop me if I've told you this already). The Clonazepam has gone up to a whole 0.5mg ODT at bedtime and the Trileptal will increase in another week, though only by 0.5ml, thank goodness. I've been a little (silently) freaked out about all this since his drop in tone which brought on the feeding issues and made him seem so vacant came on with the meds, or so it has seemed to me. So far, the Clonazepam increase has done just enough -- we've not had a night of less than five hours sleep since we hit that dose, almost three weeks ago. He's not startling himself awake even as he's dropping off, which is such a blessing as to seem an outright miracle. The Trileptal increase will be only because he's gained weight and the dose hadn't been increased in nearly a year. Wow. But here's the best part: if we get all the way into the spring without any apparent seizure activity, we're going to have another EEG and take a look at weaning off the Trileptal.

Holy cow. I mean, if he needs the meds, he'll have them. But to not need them? How cool would that be?

I said a few weeks ago at a support group meeting for parents of children with special needs that I love pharmaceutical companies. It rather horrified a mom (a homeschooler of seven, as it happens) who was sitting across from me, though she managed to keep a fairly straight face. It was only later that I learned that she "just doesn't give her kids anything." Well, let's just think of this as hyperbole getting away from me, shall we? The thing is that I don't, as a rule, do much in the way of meds. I'm more likely to use herbal or homeopathic options first, and often forget that a headache or muscle strain in myself might easily be helped by a dose of ibuprofen. However. When one doesn't sleep for more than a few hours a night because one is up with one's very cute, very sweet, yet somehow unable to sleep without Big Meds little guy? Well, under such circumstances one's philosophy might well suffer whiplash.

Therapies are going well. We've had some good progress in the department of equipment. Well, I guess that depends on one's definition of progress. We're currently borrowing a Versaform bean bag that I shape into a feeding chair for Q, then suck the air out of in order to hold him in a properly supported position. It looks like it will work for feeding and plenty more -- I rolled him into it like a hot dog and we did a little ballroom dancing, just the two of us. It was pretty funny. It's only a few hundred dollars and therefore much more likely to be approved than an actual feeding chair. Now I'm thinking I'll have to take up yoga to keep up with this scenario, since the seat will work best on the floor or a regular height table.

Q's check-up revealed that he's at about 47% for height, 25th(ish) for weight, and still under 3% for head size. Since it's late, and dark, and it's just us chickens here, I'll admit that this arrangement freaks me out a little. If some kid ever feels the need to comment upon this ratio of head size to rest of him, I'm hoping and praying (and rehearsing) calm and reasonable responses. I mean really. Kids usually ask about stuff because they're curious, their information on the subject in question is fairly limited and they're open to what they're about to hear, as opposed to looking for some way to judge what they're about to hear by their own insecurities. I know this. But still, there's something about the notion of there ever being the equivalent of a playground bully for him that makes me wanna go into Hulk mode. Rowr.

Plus... How to put this? I leave these appointments wanting to call up and discuss the whole thing with someone uniquely positioned to really get all the technical details and then give a darn about them and the kid in question. And then I remember that it's not so much an option anymore. And that there's just no place to hide, no arm to curl up under when it all gets too big to contemplate.

Double rowr. (Clever of me to avoid swearing just now, don't you think?)

More on all of this to come as we go for further progress with equipment. And I'm still hoping to write a little about first grade, since it's so much fun. Oh there's plenty to say, but I have to go blow my nose now and get the kids out the door in the morning, which means I'll be needing to sleep at some point, dreams or no. One last thing before I hop in bed -- this music I first heard as part of a PBS campaign which they ran several years ago. It made me tear up and hug my littles extra tight then and, I've discovered after listening to it again lately, it still does. Sniff. View the PBS spot here for a little something to carry with you.

Many blessings to you as we all head out in our various pursuits. May we survive the politicking, be sure of our affections and our loved ones, hold our punkins close, and revel in the everyday blisses.

The best way out is always through.
-- Robert Frost

Let's go.

1 comment:

Cara said...

Been a while since I visited -- much doings at your house. Your observation about calling someone who cares about the technical details and kid to which those details applies resonated today. Thinking of you out there in bloggy blog blog.