From blog reader Kim:
Leo is one of 6 so life is never quiet. We are vacationing for a week at Cape May, NJ. I will admit it is harder to vacation with a tube fed child, just remembering all the supplies needed for a week away, but it is NOT impossible. Leo has eaten on the beach numerous times this week. He has a rare genetic syndrome called Wolf hirschorn. He had an ng tube and then last year got a g-tube. We are working on oral feeding and hope that one day he may eat by mouth.