Thanks to the blogosphere (and Facebookosphere?) I’ve gotten to know some other parents of children with “mystery syndromes” like Joe’s. We’re all trying to figure out what to expect, and how to introduce our kids to the world when there isn’t a two-word explanation for their differences.
One of these mamas is Dana at Uncommon Sense. Her daughter, Maya, was born a few weeks before Joe and has a lot of the same delays as him. Maya’s parents have been through a lot of the same specialist visits that we have, and also came home with more questions than answers.
Now, they’ve signed Maya up for a genome-mapping program. This video tells a little more about their participation, and this article explains the variety of questions that can be answered with genome mapping.
It’s fascinating stuff, even if you don’t have a little one who could be affected! I’ll be following their story for sure.