I guess I should do an update since Sean had surgery a month or so ago! He is up to a lovely 55 surgeries, and is almost 22 years old... amazing! He needed to have his wisdom teeth pulled, which for typical people is no big deal, but for our hero it required consults from cardiology, pulmonology, and we were SO thankful to have one of our special people involved as well, the director of Child Life, because she KNOWS him well. She was able to get the best pediatric anesthesiologist to help us out with the plans for the day. Because of his pulmonary hypertension we needed to be sure that all of our bases were covered, not only to be sure the anaesthesia was done well but also for pain control, because if he is hurting, he isnt breathing well. Everything went off without a hitch thankfully, and we even managed to get one of our favorite nurses from pediatrics to care for him afterwards in recovery. The only problem was.. pain control. The meds his internist wanted him on caused him severe nausea. Not so good for a kid who has a Nissen, and hasnt HAD any nausea in nearly 20 years! We ended up going with zofran and tylenol... he had more pain than he needed to because the doc was unwilling to let him have what we KNOW works due to the intensifying concerns out in the world about overdosing on pain meds. Frustrating that experience no longer matters and patients have to suffer.

Sean is working hard on independent living skills, has started doing training to do volunteer work with our local zoo, is a great photographer and is learning some macro photography skills in addition to his regular skills at taking some amazing pictures of animals on our adventures around the country! We finally made it to Alaska a few months ago (we had to postpone the trip in 2017 due to a family crisis) and are working on plans for more adventures in the future. Life is good, and he is truly one of the most incredible young men I know. His knowledge of the world and compassion for others, both man and beast, brings smiles to my face every day.