Monday, June 16, 2014

Days +292 to +299: Thriving on the Outside, Working on the Inside

Ezra thankfully had another week of stable counts. His IgG level went up a little, which is great. Too soon to say if his body is getting back into normal IgG production, but it is definitely a good sign that something is cooking. Ezra also got to stop taking two oral medications over the past two weeks (Whoohoo!), and the very slow steroid wean continues. We are waiting for results on the latest check of his T cells. We are praying for some small improvement or at least stability, and no more falling numbers. Ezra really needs more T cells for many reasons. 

In reflecting on the last two months since we were discharged from the last hospitalization, Ezra has been thriving, at least outwardly, for the first time in a very long time. Physically, he seems to get stronger everyday. He has been asking to walk places, when he would only go in the stroller before. This past weekend he rode his bike to the park, which was a huge deal because his leg strength has been poor since transplant and got worse with the steroids. Ezra has also been asserting his independence more and acting more like a typical 5 year old, all of which we are happy to see. His concentration with his teachers has improved now that he feels better. We are very excited that Ezra has been learning how to read! Now we just need the inside to catch up with the outside. 

Today brought a momentous milestone - match number 150 from Ezra's Gift of Life Donor Circle (! We feel very blessed to have been able to help so many others. Thank you and congratulations to all who have helped us with our goal of building the registry!