Quick update: Spoke with Eric's doctor today. She would like him to see Dr. Braverman, the adult Marfan's specialist. He is a cardiologist at Barnes-Jewish and he is wonderful. When Eric was diagnosed, I saw him so that I could be ruled out for Marfan's. His father died from it, so seeing patients with the disease holds a special meaning for him. He has got to be the sweetest man on the planet...so softspoken and gentle. Eric's cardiologist (who specializes in children with Marfan's) just wants to get some input from Dr. Braverman to see what he thinks. We are waiting for a call from their office for an appointment. The two have already spoken about Eric since Dr. Braverman doesn't usually see kids, but has agreed to do so in this case.
I'll let you know when we know anything else!
6 hours ago