February 23, 2011

I am really counting down the days until we can come home. We are at day 63 post transplant today with no GVHD flares, no infections, no re-hospitalizations, no major problems to speak of which is AWESOME! Actually it's really quite amazing that Grayson is doing so well. The doctors stopped his blood pressure medication today which is one less medication to give. We are down to just 5 meds per day! So cool! They also told us he is doing well enough to stop coming to clinic 3x a week. Now we only have to go on Monday's and Friday's. This means light therapy will only be twice a week as well. This is great news because our clinic/light therapy days are very draining because we are up and down in parking garages and on two different floors for light therapy and oncology and I choose to carry my very large baby instead of using a stroller because I hate waiting for the elevator in the parking garage in the freezing cold weather. The stairs are always faster. Anyway its just great that he is healthy enough to start cutting back on his visits and it just makes me feel one step closer to home.

I miss home. I wonder if Grayson will even recognize our home when we get back. He certainly recognized his brothers but I wonder if the actual house will be familiar. Looking back at videos of him before we left made me realize how little he was when this all started and how much he's grown during this time. He is so big compared to what he was. He is just a much more mature baby now and I wonder when he goes home if it will just be one more new place we are moving to. Not a big deal, he will get used to it and will be thrilled to see all of his family in one place regardless of the physical location. Tom used to tell me when he got home from business trips that "home" wasn't about the place, it was about the people. The kids and I were "home" to him not the house. That is so true. My home comes to visit on weekends now and when they do I no longer care about going to my house, I just want the people, no matter where we are.

Grayson's bone marrow test results should be back by Friday night. At least that's what I was told today. I am not sure if this will really happen, but I am hopeful we will know something by the end of the week. I am hoping to at least know whether any of his white cells look abnormal even if we don't have the breakdown of Gavin v. Grayson percentages. We continue to pray for 100% engraftment and continue to give thanks to all the amazing people in our lives and the wonderful blessings God give us each day.