Its The Simple Things

Our sincere thanks to an old friend Moe, who ran in the Childrens Memorial Fathers Day 5k yesterday in Simons name to help CMH out with some donations. Thank you so much. Secondly, we hope you all had a nice fathers day. This photo is of Simon on Fathers Day. He looks FABULOUS as Dr. Kletzel would say. We think he is so beautiful. We enjoyed the weekend very much. We got to feel normal going to my sisters for Kyles 11th birthday and then to Daves dads for Fathers Day. It was nice to bring Simon and just be a family and be with families. We had a busy week with Simon last week and I saw 5 different specialist last week for Simon. Mostly it all went well. Our immunologist from Washington, Dr. Uzell, was in for the last time. This saddened me quite a bit as I value her expertise on NEMO and look to her for alot of guidance with the transplant. We will probably end up following up with her twice a year in Washington at the NIH. Since the TLRs came back and showed simon has some immune function that he did not have prior to transplant and his T-cells were up with the last vntr draw and he essentially was doing good and looking "fabulous" we were told not to transplant him again right now, but it could change in 3 weeks again. Its a relief to us but it always puts worry into our minds as to "when" it will have to happen. We pray never. We get blood draws again tomorrow and will find out this week where we are at. I'm scared but hoping for the best. Simon continues to not eat anything and we are feeding him by G-tube 20 hours a day. I hope that picks up in the next week where he will want food. Its so hard to see him not want to eat. Hes pretty tired alot too and we can't have him out in the heat much so the girls and I are keeping busy with alot of projects and we go out when simon naps and swim and have met friends at the parks too. So things are good. Today starts the girls T-Ball so Dave is so excited. We are all going to watch them today and maybe out for a pizza and ice cream (its the simlple things). Hope everyone is enjoying life and their summer. We ask for continued prayers and a Miracle. God Bless. Tracy and David