Saturday, June 27, 2009


I have felt just whiny this week. I'm told by those who know me that it may have something to do with the several consecutive nights of three or four hours of continually interrupted sleep I've been getting, or not getting, but even so... Gritch, moan, complain. I'm completely sick of myself.

Q's Trileptal wean seems to be progressing quite nicely. He's been feverish on and off, seemed like maybe he was having a couple of molars coming through, was unhappy and intolerant of movement in therapies (dramatically unusual), and crying a lot in
the night. So I'd thought that all the jumpiness was perhaps related to the change in medication, but I think it really was more the fever he ran for about three days. But the important bottom line? No seizures. I'm sort of whispering that, almost afraid to breathe lest I wake the sleeping ogre. Still... it's totally worth a tiny "Hurray!!!" Shhh.

As has been the norm when he has a fever or a sore throat or head congestion, his feeding dropped off. He usually has something like the following every day.

4-6 oz. fruit, thickened, maybe some agave nectar
~4 oz. of a mixture of Greek yogurt (for protein), heavy cream (fat), agave nectar (low GI sweetener), thickened slightly, plus an envelope of orange Coromega (purified, good-tasting fish oil supplement)
~4 oz water with 1/2 tsp. Miralax

midmorning -- water

1 1/2 - 2 boxes Boost for kids 1.5 cal/ml vanilla complete supplement (or "formula", if you prefer)
~4-6 oz. water (usually with Miralax)

midafternoon -- water

~6 oz concoction of veggies, sometimes with cottage cheese (protein), often just a pureed version of whatever we're having for the evening meal plus half and half, butter, or cream for fat and liquid.
more water with Miralax

bedtime -- water

While he's not feeling well, his breakfast drops to a total of about 3 oz of food, the lunchtime meal drops to a few swallows (2-3 oz?) of Boost, and supper usually becomes a few swallows of the same, if we're lucky. A couple of days this week, G stirred up a little chocolate Nesquik into small amounts of half and half and I fed it to Q through a syringe. That was the least likely to bring objection. He does love chocolate. Heh. On those kinds of days I would give anything for a g-tube because the whole nutrition aspect is scaring me to the point that I feel a little paranoid (never mind the lack of sleep part). And then he gets better, he has many days in a row of being a total chow-hound, he gets all round and chubby(ish) and shoots up three inches (okay, maybe only one) and I'm back to second guessing everything all over again. ("All the kids are tall and fairly lean" vs. "Let's have a contest -- How many hours in a day can we put into juggling all these details?)

So I guess it's time for me to remind myself that no one is deciding anything until the swallow study is done -- about a month from now. Gah.

On other fronts... I got about half of the curriculum I needed to purchase for this coming school year at the fair. Now to order a few workbooks from the Mennonite publisher, check out those online classes for G, and get the rest of the spelling and handwriting workbooks for the girls. Most everything else we needed I have now and was easy to find. And Jessie Wise signed my book. (Big grins) What a very gracious and encouraging lady. I'm so glad to have met her.

We've been spending parts of our days this week at campmeeting. The kids have enjoyed their divisional stuff and I've enjoyed listening to someone who has a curious mind and reads a variety of books to answer that curiosity. G sat with me a couple of nights in the "grown-ups" meetings and commented on that fact. I'm biased, you know. I always enjoy a nice sermon that combines Love and science. Perfectly dry humor and pictures of cool nebulae are icing on that cake.

I'll be flying down with the big kids on this coming Tuesday so they can have some time with their dad. I'm so glad they'll get to see him. And I hate that they're going away. I'll be thrilled to have them home again. As we leave the airport I'll feel like a thief and a kicker of puppies for getting to spend the kind of time with them that I do. I always do. I hate that. It brings me the sensation of ripping flesh to just keep walking them calmly away from their father, chatting lightly with them, loading their stuff back into the van to come home again, while my head and stomach spin. It's not a puzzle that I seem to be able to solve, at least not without risking the last vestiges of sanity, so, uh, I'd best focus elsewhere. Perhaps upon the looming suggestion of sleeeeep.

A quick and huge thank you to you people who pray for us all. And to those who've had especially kind things to say this week while I've been all weepy and intractable. You know who you are and I wouldn't be still upright without you -- your kindness and care so fill up the potholes on this proverbial journey. I hope to someday be a tenth of the blessing to anyone that you've been to me.

And now (to subvert the SNL sketch), we sleep. Bwahaha.

XO and a blessed Sabbath, dear ones.

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