Saturday, June 3, 2006

You will get slaughtered

Sorry for not blogging yesterday, I was down with a chest cold and
I thought sleeping was better than typing.


Yesterday, Vince and Ethan had a power breakfast at McDonald's.
Play dates wear me out – the constant negotiation about sharing
and behaving is a burden I do not like carrying, but it probably
because I was kind of sick and a little grouchy.


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And apparently the play date wore Vince out because he had a car
nap on the way to Edda's occupational therapy appointment and woke up
in the most foul mood. Crying for 45 minutes, bringing up old, long
forgotten arguments - “Mom, I hate Chinese class, they all
speak Chinese and I don't understand it. Whaaaaa!” Huh? You are
on summer break kiddo! You haven't had Chinese class for 10 days and
school is out another 3 weeks! Whatever.


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Today (Saturday), we had a nice day. We went to the Science Museum
for the 3 time in 5 days. As we were in the car park (Singlish and
British for parking lot) ready to leave, we ran into our next door
neighbor (not with a car!). Jeremy asked him if he knew of a place
that would repair the scraped paint on the car. He said that he knew
of a few places not too far from here, but he cautioned Jeremy, “You
will get slaughtered.” I think he actually made chopping
motions in the air with his hands. Chop, slash, slaughtered.
Meaning, one look at a pasty white guy and the amount for the repair
may be doubled. So our neighbor will be kind enough to take me to car
shop to get a quote and disguise the fact that we aren't locals.


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And we finally found out what was screwed up about the one, last,
excruciatingly most important genetic test. It's only the most
important because it's the syndrome that a bunch of professional
people think that Edda has, but that other professional people think
that it's unlikely Edda has it. But it isn't important immediately
because, like Down's syndrome, there is no medical treatment to
reverse the effects (no pills, surgery, radiation, diet, injections,
etc..) – only all the therapies (occupational/physical/speech)
and Early Intervention that we are already doing and such things to
help her gain skills. In New York, our neurologist ordered a
bazillion tests and we saw this master sheet that listed all the
possible tests and we saw her check off this one particular genetic
test. We waited the appropriate 6 weeks for the results and nothing.
We called Dr. Ackman last week and asked her about it. It took a
week to find out that someone in the lab in New York overlooked the
genetic test and forgot to order it. The blood did not even leave
NY. It didn't go to Texas. It didn't go anywhere. So we are back
at the beginning. We're going to go back to the Children's Hospital
next week here and get the blood FedExed to Texas which is what we
should have done in the first place but we didn't because we were
leaving for NY in 3 weeks (4 months ago) and we thought they would have facilities
in NY for the testing. Argh!

2 comments:

Rena said...

Edda's eyes are getting more focused from the photo. I still think Edda will be all right.

Old Donald said...

This is really random, but I have to say that I really like her hairdo.