Hi, Team Naaman! We are awaiting the date for Naaman’s collection at CHOP. They would like to enroll him in the study, begin his labs, and do the collection in one trip to help us out. That should take a few days, and then about a month later he will go back to CHOP for cell infusion and become a Philadelphian for six weeks. In the meantime, we have to keep him well so his sample is good. OT, PT, clinic and lots of time outside playing.
If you haven’t seen Naaman in person in a while, he’s a barrel of fun. Sometimes it’s easy to forget how complex his situation is with his messy mop of hair and crazy, wild playing and signing. He’s done an amazing job catching up in the areas he’s been delayed. He still has a long way to go in PT, but OT especially, and he still relies on tube feedings for nutrition.