Merry

The best things in life are free. To whit:

Q has enjoyed playing with toys he can reach out and grab for the last couple of days now. Awesome.

Hugs from my kids. (Only two more days 'til they're back.)

Storytime, singing, playing, learning with my kids.

The smell of that smooth little baby neck.

Laundry, fluffy and warm from the dryer.

A shiny clean bathroom.

Raking up storm debris in crisp December air.

A sunny Christmas. (Yep, you read right. It's sunny.)

Two working hands for typing, making breakfast, hair brushing, back scratching, playing piano, changing diapers, holding books and turning pages, folding clothes, making beds.

The ability to think. And then, to understand.

Light switches which work, because linemen from all over the country have been cold and tired and working themselves nearly to death in these parts for the last week and a half. (Three cheers for these guys--as part of the 1.5 million local customers who've benefitted from your efforts, thank you, thank you to you and your families.)

The company of kindness. Whether it be familiars or folks met in line at Target, I find myself constantly running into people going out of their way to just be kind. Perhaps they've spotted the sign on my forehead, the one that reads: FRAGILE (Be nice to her or her head will explode. We're not kidding.) Whatever the case, these exchanges are an active blessing.

The opportunity to wish you all a very Merry, very peaceful, perhaps even blissfully calm, Christmas day. Whatever your faith, may your day be warm with love, rich with belly laughter, may you be well-fed and cozy, reveling in the gifts of your life.

Joyeux.

Quote of the day

To sum up the general theme of the day:

If at first you don't succeed, lower your expectations.
--me

The oldest four kids should be safely in California by now. If you'll excuse me, I have to go get the nasty taste out of my mouth.

Ptooey.

Definitions

Terms I'm encountering as I read:

Dysarthria (don't yet know if it will apply)

Arthrogryposis (Q is tighter in his ligaments, but not frozen at all)

Pseudobulbar palsy (don't know yet, but probably to some degree)

Dysconjugate gaze (yes, but to what degree?)

I'm looking for a definition of oropharyngoglossal dysfunction. Apparently this is more obscure. I'm guessing that it has to do with swallowing, which means that it's likely that Q has something going on here, but I don't know what.

Ack. He's peeping again. Did I mention that most kids with PMG seem to have sleep issues?

Neuro stuff

Read about polymicrogyria here, in a paper from France (not in French, but fairly technical). Wikipedia has more, with less big words (less being relative--heh). Even more (support site).

I'm hoping that it's PMG, rather than straight up lissencephaly. The prognosis seems better to me, though of course we'll only know what to expect from Q as he reveals it to us himself.

Oy.

Agenesis of the Corpus Callosum

There. I think I've finally spelled it correctly. Read about it here, as it pertains to this blog. Read about it here or here for informational purposes.

Ho hum

I had planned on leaving today after Q's therapy, but we're going to court on Monday instead.

Blech.

I'll post happier stuff later, but just wanted to let you all know that we're not on the road just yet. As always, prayers and good thoughts are very much appreciated--both for all persons in the courtroom and for my punkins.

Thanks.

Give your beloved an extra squeeze. It's been a doozy of a week--you both could use another hug, couldn't you?

Sleep well.

Ick

So Q had a check-up today.

He's at the 45th percentile for weight (though I think he was too wiggly for the scale to register correctly), 75th for height, and is still hanging out at about -3 for head circumference. At least his head is growing--too fast wouldn't be good either, so he's maintaining his curve.

Tomorrow I go to pick up the handicap placards for the van. The pediatrician checked the "permanent" box on the form.

The list of things babies his age should be doing is so far from what the daily expectation is in this house: sitting, standing, cruising, beginning to walk, babbling, saying mama and dada and starting with other small words... He doesn't do any of those things. He often doesn't notice me (visually) unless I'm right in his face.

And I just checked my email. You know, because I was just shutting things down for the night and apparently needed something to keep me awake. I'd be thrilled to leave the crud where it lands, if only it could just shrivel and die right there. No, it takes on a life of it's own, grows roots, then tentacles, morphing into ever more threatening forms.

Cryptic, aren't I? Well, what can I say? We may be back in court very soon. Sigh. We're supposed to be leaving for California on Friday.

I'm going to go read and pray. Both are usually very settling for me. I might even sleep tonight. And tomorrow I'll have a better attitude for having read, prayed, and slept.

Blessings.