Karen -- Where do you live? The doc we are seeing is Dr Theos at UAB.
She did mention the ENT and we saw one on Wed and were pleased! She also mentioned the eyes and we have been seeing a pedi eye doc since she was born and he released us at 4mo b/c her eyes were looking great!
Kati, Mom to Kennedy Jane (March 2007 -- unaffected) and Kallie (May 2009 -- collodian layer and no diagnoses yet)