I had a great time at Blissdom and had the opportunity to meet some wonderful people. And nap. I have quite a few things to share with y'all but it's too much to type up in the 10 minutes I have at my laptop.
Klaw's appointment with Dr. Vockley and the genetics team at Pittsburgh Children's Hospital is just routine. I have no idea if we'll glean any new information or if he will recommend any changes to Dr. Proud (or primary geneticists). I am going to give permission for Klaw's genetic information to be included in a new database for this family of disorders. It's mostly anonymous, each person is assigned a number. I really think it's important to share as much information as possible with researchers. If his information helps find a better treatment or, even better, a cure, it will be worth it.
Well, that's where we are right now. Hopefully, next week I'll be able to sit down and share some exciting news with y'all.
