Sunday, April 02, 2006

Reading up...

So I've been Googling. I have seen the CT and xray reports (what the radiologists write upon reading the films). Also the EEG reports, which are full of very big words that boggle the mind. It took some doing, but I've been able to deduce that "synchronous sleep spindles" are a good thing, that Q has them, but the amplitude isn't what it should be. Whatever that means. Maybe nothing.

One of the terms that was a little easier to nail down is "colpocephaly." It is defined as "a brain disorder in which there is an abnormal enlargement of the occipital horns of the brain. This enlargement occurs when there is an underdevelopment or lack of thickening of the white matter of the brain." It is characterized by microcephaly and mental retardation. So I look up microcephaly. I'm aware that I may be deeply in denial, but in the midst of the definition it says, "Microcephaly is often equated with developmental delay and mental retardation. However, not all children with microcephaly are mentally retarded."

Well. That's a good start, right?

Q's microcephaly is congenital. It is defined as "An abnormally small head due to failure of brain growth." According to the neuro guy, this is precisely what's going on. The issue of colpocephaly complicates things further as it's an obvious and specific defect in brain development, though the precise implications of any of this are as yet unknown. I do know that my titers for any possible intrauterine infections (rubella, toxoplasmosis, cytomegalovirus, etc.) were negative and Q's karyotype came back exhibiting "normal male chromosomes". There are contiguous gene syndromes and genetic disorders which could cause this, but none seems to be indicated at this time.

The bad news: "On average, life expectancy for individuals with microcephaly is reduced and the prognosis for normal brain function is poor." Hmmm.

And still the little guy continues to coo and gurgle. He's started focusing on the mobile above his swing. He's discovered his nose. (I love that face they make when they're trying to back up and get a better look at the thing that's sprouting from between their eyes--mouth scrunched, eyes crossed, chin tucked in. Too cute!) Yesterday he watched intently as his arm went by his face. Today he's twelve weeks old. So what is he supposed to be doing that he's not? I keep thinking that there must be some mistake--yet all the tests say in the "reason" section: developmental delay. Maybe I am just in deep denial.

One very interesting article I found on (all quotes are from discusses a study on intelligence in children. Apparently, the amount of gray matter is not the indicator of intelligence, rather, it is related to "cortical growth patterns." It would seem that having a thinner cortex in the very beginning of one's life (which then grows and thins again in a specific pattern) is associated with being scary smart later on. Q has a thin cortex over the occipital horns.

Who knows what any of this means? Perhaps reading all of this is just something for me to do instead of losing my mind?

In the meantime, some happy things:
E sang with her class for church this week. She and her compatriots were marvelous. Exuberant and practiced and marvelous.
The girls and Q and I participated in communion. I think the girls actually kind of "got it." Very cool. Q hiccuped loudly through the whole thing--cracking up the nice couple next to us.
G loves his little brother so much that he's willing to make up verses to "Hush Little Baby"--the little guy's favorite lullaby--when Q is fussy. No machismo there yet. :o)
K is sight reading about twenty words, sounding out more. Yay!! I love this stuff.
S is S. Silly and bouncy and chomping at the bit to do all the stuff her sisters do. Now if I could only influence the child to keep the scissors away from her head and to hold still long enough to eat a little more at mealtimes...
Strawberries and ganache for breakfast this morning. You should come visit. :o)
My folks, housing the kids and I through all this insanity and being so supportive in all the other ways too.
My sweet brother and sister-in-law who took the kids to play and shop today. Wow.

G'night. Sweet dreams to you, wherever you are.


Old Dominion Heather said...

Hey Carrie...
I'm glad the little guy is doing so well. Don't you believe you are in denial. My oldest was supposed to be visually handicapped. Best possible sight diagnosed at birth was maybe 20/100. Maybe that good. He is six and has 20/40 to 20/60 corrected. The problems didn't go away, but they are managable and so much less severe than the drs. thought at first. Prayer... no other explaination here. We will keep praying for Q. and you and the kids.

momofg&w said...

Just want to let you know that my daughter is 3 1/2 years old with microcephaly, growth delay and clinodactly. Although she was developing normally, the docotors scared me to death for the first two years of her life! Her pediatrition was postive she would be mr and that her development would regress. Boy did she prove him wrong. After seeing a neurologist at A.I. Dupont, I finally decided that I was NOT in denial. As a teacher, I see parents in denial often and figured that I was too. My daughter is starting Pre-K in the fall and has the cognitive intellegence of a 5 year old. So go with your heart! I will pray for Q and you as well.

God Bless