A Twist

We are in Paris for a week, mainly for work, with the weekends tacked on to spend with Stellan’s French grandparents. During one of our visits last year, just around when we learned of Stellan’s diagnosis, we met with a pediatrician here so that if he ever got sick while visiting he could be taken care of. Knowing we were coming back this week, she arranged to see Stellan again today and also set up an appointment with a pediatric neurologist. A third opinion, if you will. And the results were quite interesting.
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A Sad Farewell

When we first got Stellan’s diagnosis, the neurologist told us NOT to turn to the internet for information. And of course I understand why. The surest way to get incredibly freaked out or depressed over anything medical is to Google it.

So for some time, Quentin and I obeyed the rule. I purposely didn’t search for anything about Pachygyria, Lissencephaly, or anything along those lines. We were so early in the process, with so much uncertainty ahead of us, it didn’t seem to make sense to read something that may or may not have been completely irrelevant to Stellan’s case, and ours.

But after a while, we wanted at the very least to find out if there were other kids out there like ours, other parents like us. How were their kids doing? And how were those parents coping?
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