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.


Carolyn said...

Holes in the belly vs ease of feeding? What a polite way to put it. My daughter has a g-tube, but it's a good bit further down the GI tract and it's for ease of self-care. For us (with no one to describe the procedures ... I don't want to know) it boiled down to a button on the belly or 1-2 aides to help with personal care.

It's been great (after we switched from the closing hole to a button).

We do pray for you!

Whitney said...

I'll be praying for all your decisions. God bless you.

Mr. Salisbury said...

Difficult choices with the feeding. What kind of pack did you get? I recently found a nice Kelty at a g-sale for $10. Not sure what kind of stroller/trailer you are talking about. You know I like Chariot. Here is another very good company that makes a nice large trailer. We will pray for safety on your flight with the kids.