Missing: Part of One chromosome
If found, please return
No questions Asked
Actually, we have lots of questions but now at least one answer. We took a second trip to Seattle in three days. Last weekend was purely for fun, Wednesday we returned because Jack had an appointment with a geneticist.
Jack’s geneticist had heard about a new test and had a spare vial of Jack’s blood sitting around, for some reason, so she had it examined. Turns out Jack is missing part of the 19th chromosome. To be exact 19q13q12.11.
What does that mean? You got me. You got everybody. I guess the test is so new the Jack is the first person they’ve come across missing this particular piece of this particular chromosome. So chances are he’ll be the benchmark to which other kids are measured. Though it would seem a safe bet to attribute his low muscle-tone, delayed gross-motor skills and language development to this.
That’s where we sit, semi-diagnosed with further trips to Seattle coming up.
While Kim and Jack were at the Group Health Campus, Lucas and I headed down the hill to Seattle Center (again). We had a grand time. Couldn’t get a hold of Dave,

so we didn’t get our accustomed free-trip up the Space Needle.
But that’s OK.
We didn’t havemuch time.
We did take another ride on the monorail and hung out at the International Fountain for quite a while.
Ordinarily neither of us are much for sitting still, but this was a beautiful day (especially for October).
The music and weather were nice, but the highlight was me posing for a photo in front of the fountain.
I stood on a dry spot while Lucas focused.
Goodness, that water shoots a lot further than I expected.
I was doused, and screamed like a little girl.
I was damp for hours.
A small price to pay for a day of hooky.
1 comment:
troy, i love that photo-especially the story behind it. lucas got some skills,Yo.(i'm a college kid now, and alternate between slang, and slipping algebraic and electronic vocabulary into ordinary conversation-hey at least i know my brain is working!)
kim told me about the partial missing chromosone thing-but she didn't make it into a funny haha like you did- with the "no questions asked" thing. jack is one of the absolutely most delightful people i have ever met, so i say "chromosone schmomosone". not really...it is interesting and good that they are figuring things out about him, but at the end of the day, jack is jack-and Both of your kids are extremely lucky to have such wonderful,loving, dedicated parents, that love their kids for who they are-not who you want them to be. they are really cool kids, and like i told kim the other day- all the kids seem a little "off" these days- eli is a manic ball of anxiety- but i couldn't love him anymore if i tried. keep up the good work.
love, niki
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