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.

Saturday, June 20, 2009

Home again, home again...

Jiggety jig. :o)

The EEG showed zero seizure activity. Woot!

We're operating on the Trileptal reduction schedule now, to be done in a few weeks, then back again to discuss oral Baclofen (for spasticity). If he does well with that, maybe we'll end up thinking about an intrathecal pump. Another procedure to weigh.

The lovely neuro guy spent about 55 minutes with us, discussing every aspect of what's up with Q, from amino acid levels to beneficial therapies, to the travesty of Medicare/medicaid reimbursements. He's awesome. He made Q giggle at his Donald Duck impression, oohed and ahed over Q's tossing his ball across the floor, was (dare I say?) excited at the news of Q recognizing colors and letters.

I wish I could hold a thought in my head at the moment -- I'd share more details. As it is, I think we'll all be happier if I just go crash quietly while the cranky, teething, meds adjustment tolerating boy is sleeping.

Hope you have a sweet and peaceful weekend filled with the ubiquitous love of your Creator and your dear ones.


Monday, June 15, 2009

To doctor, to doctor, what. Truss a bad wig? To... Stir jam up of figs? Roast good things that dig? Sorry. I've got nothing, but "to buy a fat pig" really didn't fit. Anyhoo...

Just a quick post before running off to vacuum, get lunch together and then head out to the neuro appointment this afternoon. I'm running tired today, not feeling especially clear-headed -- two fifths of the children were up in the night and one of them quite repeatedly. Guess which one.

You're right! How did you know? :o)

The neuro office called last week to tell me that the results of the EEG showed no seizure activity. This being the office manager with the pronounced accent and an understanding that no one else can possibly grasp the issues at hand (eyeroll), I don't know what that really means. I'm not ready to get excited. Well, not beyond the little leap of fluttering hope that pops it's head up every time I think about it.


As much as I long for good news and easy stuff, I'm not especially trusting of such things any more.

On other fronts, G is recovering nicely from periorbital cellulitis. Yay for Big Pharma! I heart antibiotics that really can kick bacteria. E had a round of puking Friday. There's really nothing like waking up to that. After we thought it had passed. And she had eaten spinach ravioli. Which I scrubbed out of the rug with Clorox wipes. Hey, certain sections of the walls and floor and etc. have been so thoroughly disinfected as to have exceeded OR standards. Really all I'm missing in my arsenal is an autoclave.

Thankfully, it seems to have been just an E thing and not a sharable bug. Or I scared it to death with bleach. Great image, no? Three a.m. and I'm brandishing wipes, bleach , paper towels, trash bag, and shouting (whispering), "En garde!"


Anyhoo, we've been mostly having fun. We've been whipping up quinoa salads, potato salads, and other assorted yumminess. There's a quadruple batch of strawberry jam in the freezer, made from local berries that melt in your mouth. Slurp. When things get hectic I don't get to do much from scratch. I always forget how much I miss it until I get back into the rhythm of chopping and stirring, seasoning and feeding. It's sort of a three-fold blessing -- it's meditative for me during the process, gratifying to feed the peeps and then have them both enjoying the food and being nourished by it.

It's about time for the homeschooling convention. I have a short list of things to pick up this time, mostly high-school level reference stuff and some workbooks. It's funny -- when I first discovered The Well-Trained Mind I spent hours and hours over the period of several days working out all the details, getting everything just right. I can now list everything the kids will need for any given year from memory -- with the possible addition of ancillary workbooks for an individual child and the exception of the complete reading lists. Funny, no? Anyway, I'm going to try not to swoon at the smell of all those new books. (hee) The big kids may go for part of the day. They get a kick out of it too.

Q's been in the pack for the first time this season. I carried him only about half an hour, thanks to gallant young men in our company, including G. Q seemed to think he'd made himself a cadre of new friends by the time we were done, so I think we're good to go for this year anyway. He's a heavy boy -- about 32 pounds -- but we'll manage to trek around for a few more months anyway. There's a big SN jogger/bike trailer out there. It's about $700 new. It's awesome. I may have posted about it before. I'll go look after the appointment and if not, I'll come back and put up a link to the page.

Melanie and Lonnie and Daniel seem to once again be tracking our vibe, or vice versa. I'm watching Q again for a G-tube, simply because we don't seem to be gaining much on the ability to handle texture. Crackers that melt are okay but he loses lots, soft bits of bread sometimes get chewed and go down, more often not. Otherwise Q has everything pureed, thickened, or monitored as if he were in a maximum security facility and trying to get away with something. He does water okay, but does also aspirate. Some. But no pneumonia. Yet. Which brings us to the swallow study. Turns out Q's Speech Path person is the new facilitator for the brand new pediatric swallow study program at the hospital affiliated with the therapy place. So we'll be doing that fairly soon and follow the result with some decisions.


I'll spare you my lament about holes in Q's perfect little belly vs. ease of feeding, what constitutes appropriate weight gain and how one determines what is good nutrition for this child. This part of the medical issues I completely and utterly despise. Most things that come up with him are just things to be conquered, not argued. Do the research, make the decision, on we go, chasing progress. But the eye surgery and the G-tube issues don't seem to have any clear answers (yet) and I hate that. Hate it. His daddy's gruesome descriptions of various procedures lurk in the back of my mind. The order of magnitude for these is too big for there to not be any clear answers; the thought of anyone cutting into this punkin makes me want to vomit. Perhaps I'll stay away from the spinach ravioli for a while.

Back with news later. Thanks for praying.