We spent more than four hours with specialists at the Sie Center for Down Syndrome at Children’s Hospital Colorado today. There are plenty of follow-up appointments to make, loads of strategies to incorporate, and too much information to process just yet. I need to let it stew.
Meanwhile, I’m replaying some of the day’s finer moments.
Father and son shared a laugh.
Raphael surprisingly managed a fork and a bowl and gleefully chewed and swallowed chopped spaghetti and meatballs on his own. (That was truly mind blowing.)
The physical therapist, who literally wrote the book on gross motor development for children with Down syndrome, said our boy is very close to walking. (We don’t usually let ourselves believe that imminent things will actually occur any time soon.)
The best news came from one of the world’s leading developmental pediatricians who specializes in Down syndrome. Raphael is doing remarkably well, he said, especially given our son’s extremely challenging start and his illnesses his firt year.
Before I begin on all the new things I now need to do for my son, I think I’ll take a moment for a few gratifying breaths.
Feeling extremely grateful.
In honor of Down syndrome awareness month, I am trying to post to this blog every day for 31 days (or at least 31 times in October) to increase awareness of Trisomy 21, the most common genetic condition that causes the syndrome.