Thanks for the advice and support. My son's (Adam) first cousin once removed was dx at birth and they have used Dr. Chancey (I think this is right). My husband's cousin (Lauren) called them and discussed Adam's case and they are seeing him next Tuesday! They are out of National Children's Hospital. Lauren says it is not very aesthetically pleasing but once you get to the CF Clinic, everyone is compassionate and caring and knowledgable.