Aiden Update - Trip to Cincinnati Children's Hospital

Today we went with Aiden to the Hemangioma and Vascular Malformation Center at Cincinnati Children's Hospital Medical Center. We learned that Aiden does not have Klippel-Trenaunay Syndrome as was suggested previously. The doctor' at Cincinnati Childrens are confident that he has Blue Rubber Bleb Syndrome. What does this mean to most of us who have never heard of either of these syndromes. Blue Rubber Bleb is a bit more serious and could result in internal bleeding later in life. Even though he shows many symptoms now (the bulge on his elbow, many other skin lesions) - it could become more pronounced once puberty sets in. For now we just pray, wait, and see what happens with regular check-ups (6 months or less). Lesions can form both externally and internally. Internal lesions are the problematic ones. Lesions that form on the gastrointestinal tract can cause internal bleeding. Please pray that they don't form there. We also need to make decisions on whether to have him undergo some treatments to reduce the size of the bulge on his elbow, plus remover some of the external lesions that may cause discomfort (some on the foot already provide some minor discomfort. Our prayers are that we will make the right decisions as to the what and when - and that insurance will cover these (they can also be viewed as cosmetic). More to come as we learn more.