Cheeky went to clinic today for a blood draw and “check-up.” His counts look great and no new symptoms have popped up. We are all very pleased to be outpatient and getting to play with other kids and be out-and-about. He’s been pretty booked for playdates and birthday parties!
Our focus right now is on PT and developing a long-term feeding plan. He is still on continuous feeds (that means hooked up to Foxy, the feeding pump, most of his waking and sleeping hours), so we are hoping to shorten them. While we hoped the tube would be unnecessary by maintenance phase, he still needs it for nutrition, hydration, and of course the yucky-tasting meds.
Naaman was too excited to wait for Saturday to wear his new astronaut suit. We are planning to celebrate the Apollo 11 anniversary with other tiny space enthusiasts at the New England Air Museum!