Enough already

It's official. I have no neck. My head's other occupation as battering ram has resulted in it having sunk about level with my shoulders. My hair's still visible, but only just. What's that you say? Sounding a little looney, am I? Well, I confess that I'm fighting the urge to curl into a fetal position and pull the covers over my head and just never come out. Helphelphelp...

Q saw the neurologist this morning. The MRI was very helpful. It was not good.

As I understand it, one needs a great deal of variability in the surface of one's brain--all those squiggles and bumps (invaginations) represent a huge surface area which in turn represents the number of neurons in that brain. Q's brain is pretty smooth from about the middle of his head to the back.

Gulp.

Though he's showing progress with therapy and it is impossible to know for sure the extent of things until he actually does grow and gets a little older, an MRI result such as this tends to indicate "severe" mental retardation (MR). On the scale, measured using a standard test, there is mild, moderate, severe, and profound MR.

Quoting the University of Michigan Children's Hospital website...
"Severe (IQ range 25 to 39): Preschool-age children with severe MR have delays in motor development and little or no communication skills. With training, these children may be able to learn basic self-help skills, such as feeding themselves and bathing. As they grow older they can usually walk. They may have some understanding of speech and some response to it. As adults, they can get used to routines, but will need direction and supervision in a protective environment."

I find that I can't stop crying.

I was prepared for something more along the lines of mild to moderate, I guess. I mean, there's no denying that he's not quite up to other babies his age developmentally. But he continues to progress and that should continue in perpetuity, right? That's how it works, right? Apparently not.

He may never be able to function without a guardian. According to the neurologist, he will more than likely never be able to function without a guardian. Babies brains are very mobile and do often correct for all sorts of deficiencies, but this appears insurmountable. It sounds like sort of a black hole where his visual cortex should be...

I don't know how to wrap my head around this.

This, all by itself, is more hell than one little guy should be expected to tolerate in a lifetime. Poor choices shouldn't even rank. People with no self-control should just plain step off. This makes me so angry. So terribly, unspeakably angry. Back to that free will thing again. Gag.

I guess this would be the place to insert the ten-ton swear words. There just, truly, aren't any appropriate enough to bother uttering.

The neurologist's chart notes should be en route to me by next week, so I'll have more real info then. I wanted to, but was too thunderstruck to say, "Use the big words, please. They confuse me less." So there's a great deal I'm not as clear on as I'd like to be. What he was very clear on is that there's plenty to do which can maximize the building blocks Q has. It's just that those blocks are not enough to do the job, as it were.

Q will probably have the eye surgery sooner rather than later and that will help, but it will not fix this. Q will have a visual assessment to determine how best to stimulate him visually without overloading him, which happens more quickly for him than in other babies. Q will have a lot of therapy and the best of nutrition (a nursing mommy who is taking vitamins and supplements and could feed a small country with the extra milk). But it will more than likely not be nearly enough.

There's no name for this--I'm sure there is, but it's not a syndrome or anything. We'll trot off to a pediatric geneticist after awhile to rule things in/out on that front. It seems that something happens at the beginning of the second trimester of pregnancy to cause this, though we will probably never know what it was. Let's see, where was I at the beginning of the second trimester? Oh yeah, that's right. In an emotional free fall into Hades. Huh. I wonder...

Well. I'm not making much sense, and the little squirt just awoke from what I was sure would be an hour long nap, so we're heading off for groceries.

Thank you for lending your good thoughts, extra strength and prayers on all sides. I cannot tell you how much it means to me. To us.