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November 09, 2005
A Small Update
A small update regarding Dashiell's condition.
So far I've been in contact with an initial service coordinator from a company that provides the Early Intervention services in our county. Dashiell's condition, Cri du Chat, is not included in the automatic eligibility group, so the evaluation will be what determines whether or not he's eligible. Mostly I think his condition isn't included because it's so rare... about 50-60 kids annually means it's nowhere near as common as say Down's, which occurs in something like 1 in 660 or so kids. So I'm not particularly worried that they'll say he's ineligible... all one needs to do is read any of the literature on CdC to realise that this is often extremely serious and severe, though Dash seems very mildly affected (and he's proving he definitely doesn't have low muscle tone as he squirms and kicks on my lap right now...).
Anyway. We have 2 different evaluation meetings set up for now, I believe one focuses more on the physical and the other the emotional/mental development. One on Dec 1 and the other Dec 6. I'm going to try and move the first meeting to the 2nd though, because that's when we have an appointment with the geneticist at the same hospital, and he's not in on Thursdays so I couldn't have that appointment on the 1st. It makes sense to try and at least get both appointments that are in the same place done on the same day, which also causes less hassle with PreZ getting time off from his new job, though they were kind enough to tell him that whatever he needed he could ask for/get.
The meeting with the geneticist will be when we get the results back from our blooddraw, so we'll find out if it's a spontaneous de novo occurance or a case of a translocated piece of a chromosome. The outcome of this will of course have bearing on any plans to have future kids.
Other than that, early December will see visits to the cardiologist for a check-up for his murmur, and his 4 month well baby visit, both of which we postponed a little bit due to the fact that this month we are in between insurance coverage with PreZ having changed jobs a couple of weeks ago... and a single one of those well baby visits costs a hefty $275, and COBRA wanted $880 to continue PreZ's old insurance coverage for that month (ripoff artists!). We declined, we're not made of money, and making any appointments a mere 2 weeks later wasn't that big of a deal.
Posted on 01:47 AM to: Cri du Chat , Dashiell