Friday, April 28, 2006

Big words

What a heck of a week. I feel like I've spent most of it in the van and at doctor's offices, which would be because I actually have.

G is getting glasses for astigmatism. The kids had piano and gymnastics, so lots of driving there. And Q had three appointments this week.

On Tuesday, he had an "extra" well-baby check. He was 17 lbs, 7.25 oz., 26" long. Good news there, but his head circumference has dropped off the bottom of the chart. That, of course, is not good. He's past the breathing problems for now--hurray! But because bronchiolitis sensitizes the lungs to future bugs as well as asthma issues, he'll be watched closely. His hydroceles may in fact be a hernia. Not great, but again, watching closely.

On Wednesday, he had his pediatric ophthalmology visit. His diagnosis is intermittent exotropia with hyperopia. The (really) nice and extraordinarily well-qualified doctor also noted "poor fix and follow" as Q tends to track moving objects briefly and then quickly lose them. His eyes are functioning less and less well together and he seems confused by it; he was tracking better in NICU than he is now.

On Thursday, he had neurodevelopmental physical therapy. His therapist got all excited last time when I told her I'd trained as a massage therapist and have been working on the little guy's hypertonia. She and my mom concur that Q got the "right mommy." (I hope so.) He now has tiny neoprene hand splints to wear at night to hold his thumbs out of his fists and will have lighter weight ones to wear during the day. I hope he doesn't have to wear them all the time, because it seems that he's becoming more and more aware of his hands as he's receiving work on them. He seemed to be a thumb sucker right from the beginning and still loves them when and if he connects them with his mouth--nursed baby + skin to suck on = Nirvana. So my worry is, how will he find his thumbs (and therefore his ultimate happiness) if they're wrapped up in neoprene most of the time? It's probably silly in the scheme of things, but it's something I think about nonetheless. Why? Because I'm the mama. It's what I do.

And, drum roll please... the big words for the week: colpocephaly and intermittent exotropia.

Colpocephaly: enlargement of the occipital horns of the lateral ventricles, often accompanied by mental retardation, seizures, and visual disturbances that result from hypoplasia (underdevelopment) of the optic nerve.

Exotropia: a form of strabismus in which eyes deviate outward.

Other than the fact that seizures have been at least temporarily ruled out, the definition for colpocephaly precisely characterizes what can be seen on the CTs Q has had so far. He will have an MRI about 2/3 of the way through May to further clarify his neuro issues. The exotropia will likely require surgery. Q will be seen again in three months for a recheck of his eyes and to decide at that time what/when will be done. The procedure is usually performed between 6 months and 2 years of age. Developmentally, there is a strong case for having the surgery just as early as possible. It would allow Q to have better binocularity which would help him lay down better neural pathways which would help him have better vision, and so on. Each supports or wears down the other. However, if he has the surgery and then goes on to experience some degree of self-correction, as many little ones do, he would require another surgery to re-correct his alignment.


So there's the news. Or all the news that's fit to print. The rest is just annoying and not especially pertinent.

I feel like I've pro/re-gressed from being held by the nape of my neck so my head can be used as a battering ram to just banging my head on a table, over and over again. If you feel the earth shaking, it could just be me, raging and sorrowing over here. Gag. Have I mentioned that free will sucks? Here we are, I would give anything, truly anything, to be able to keep Q and his sibs safe, and to make Q whole. And on go the folks who took the tremendous gift of self-determination as a personal challenge to do as much evil as possible in the span of one lifetime. They squander their lives. What is wrong with them? And why aren't we all, the good, righteous (use it in or out of religious context), kind and considerate folks who strive (and yes, we all miss the mark too often) to act only in the best interest of our beloveds, whomever they may be, why aren't we rising up and saying, "Enough crap from you. And you and you and you. No soup for you! Go sit in the corner until you can play nice. Do not pass go, do not collect $200. You. Are. OUTTA HERE!!" And? No reproducing. We do not need more of that kind. The planet is having a hard enough time without smaller versions of the crappy people running around.

Not that you asked.

Ah, well. So much for my infinite wisdom. Ha. At least next week doesn't have quite as many doctor's offices planned into it. The kids have their spring piano recital, Q has neuro PT and a speech therapy evaluation. Other than that, it's more usual stuff, thank God. I need less running around at least for a couple of days a week, so does Q. The little girls do quite well with it (again, thank God) as long as we have books and coloring equipment along. Stories to read and school type stuff to do go a long way toward making the days bearable, even great fun.

This week while we were at piano lessons, S was looking at the van door and wanted to know what that picture of her was and how come it looked so funny. I told her it was her reflection and launched into an explanation (simple version) of shapes of reflective surfaces giving back different images, when she interrupted me to say, giggling, "That's my free-lection."

What a hoot.

I wish you a blessed, peaceful, rest-filled weekend. Off to sleep quickly now before my head does fall over onto the keyboard.



Dy said...

What a sweet little girl. Those moments are the ones we tuck into our hearts - they get us through the other times, don't they?

Thank you for the updating, and I have to concur with the others - it sounds like this precious little boy did get just the mom he was going to need. {{hugs}}

Know you are thought of and prayed for.


Myrtle said...

I don't know what to say.
You are right about people doing evil. I think about that sort of thing. It's funny how having a child with a handicap can make one really evaluate life as a whole and think about all sorts of thing.

The other day I met a mother with a teenager daughter who was losing her sight. She is very nearly blind now. I asked the mother what the diagnosis was. She said, "We don't know." That one statement says the family has been through an alternate universe of h***

I am sorry you are going through this.

Yevrah said...

Wow Carrie. You are indeed 'da (wo)man'! I'm so glad you can articulate the feelings you're having while walking thru all this sh*t. Are you able to vent with friends too (like the wonderful gals at your birth?) I see such a commmitment to staying 'in the moment', and that will ultimately bring much healing and goodness to your life.

You are the right mom. You are the good woman. You are a treasure. Be strong, be weak, be you. And know you're loved.

Kay in Cal said...

Oh, Carrie... still praying for you here. Blessings on your little one and you.

Laura in PA said...

Blessings and peace to all of you. You show such strength and wisdom, although I am sure you must often feel overwhelming burden and confusion. Thank you for sharing and for giving us the priviedge of lifting you and your family up to God and caring for you... even if it is through cyberspace.

Old Dominion Heather said...


It sounds like the PO for little Q's eyes is right on the money. We have done the whole vision surgery, therapy , maybe more surgery thing here for quite some time. It is great that they are easy to work with.

We are praying for you guys.