We are currently in the calm before the storm. Teddy is home and stable. He will be in multiple times a week for testing and vitals while we wait on the bone marrow transplant (BMT), but we are blessed to live close enough that they let us come home for the time being.

BMT Prep – Nolan was tested last week to see if he is a match. We should find out later this week if he is a match or not. He has a 25% chance of being a match, but he really wants to be a match, so fingers crossed. While we are waiting on Nolan’s results, they will also be checking the national registry for a match, so we should hear about that as well later this week.

Osteopetrosis – We are waiting on genetic testing for Teddy to determine which gene caused this. That will affect his treatment and how they structure the BMT. This test was sent out last week to a lab on the East Coast, and preliminary testing should be back early next week, with the full report coming within two weeks after that.

While we wait for the BMT, they will be closely monitoring his red blood cell count. Every Thursday, I will take him in for a blood draw to check levels. If they come back low, he will go in on Fridays for a transfusion. He responded well to his last transfusion; it vastly improved his coloring and alertness.

Next Steps – Once these tests are back we will start the scheduling of the BMT. The sooner it happens the better chance we have at a successful reversal of this condition and of limiting the number of deficits he will carry with him into the future. In a perfect world we are hoping for weeks not months as a timeline.