We are currently 31 days post-transplant and 24 days into our ICU stay. We’re still deep in the transplant process. The initial cells have arrived but were needed for significant repair right away and are working hard to take root while fixing the damage in his body. Osteopetrosis is one of the most challenging bone marrow transplants for babies, and we’ve learned this the hard way. Despite being only five months old, Teddy has shown remarkable strength and resilience. He has overcome a brain bleed, seizures, a blood clot in his heart, sepsis, and respiratory distress, but he still has a long way to go.

We are now focused on supporting his respiratory and organ function while his cells continue to take hold. We are awaiting results from a significant lab test from Fred Hutch, which will tell us the percentage of Nolan’s cells that have taken root. This will determine our next steps, including whether a second cell transfer is needed.

We had hoped Teddy would be coming home around now, but that doesn’t seem likely. We’re resetting our expectations and are now hoping he can come home by Labor Day. Even when he does come home, we will still have a long journey ahead, with many unknowns about his future. His level of vision, the lasting effects on his body and mind are still uncertain. Some kids come out of this ‘normal,’ while others face significant challenges. We will have to take it one day at a time and may not know the full impact for years to come.