Its so amazing to me how things change from week to week for us. We have had two weeks of no worry for the most part as we had gotton great vntrs two weeks ago and things have been well. We went to clinic on monday and there was alot of talk of lowering the immune suppressant every two weeks and worry overcame me as that is when we lose our donor cell numbers, or at least there is a pattern of such that is unconfirmed as to what really happens but this week Simons igg went down to 384 (below 400 is when they give ivig which is what supposedly makes him have a horrific rash) so now we say okay he is unprotected and what do we do? take the chance? So that is undecided at this point. Then we get our vntrs and they are down only 2% overall but one of his levels is down 9% and to us that is huge. There is no good explanation and noone can tell us why or what to expect but all we know is that when we lowered his cyclosporine the levels are now dropped. So we have to wait. We were suppose to lower it again I said no. I'm scared to lose the donor cells. Its a catch 22 because if you don't taper it he remains at a significant risk of catching infections because his immune system is still so suppressed. They are running Hflu and antibodies to see if there is any reaction from Marrianas cells and then the decision to give ivig will come, that will be end of the week. I have a restful weekend planned and part of it included some time alone just me and my sister and now I feel so anxious and worried and all I can ask is for heavy prayers. Pray for the donor cells to be stronger than is recording and that he is rebuilding and getting stronger with just those cells and none of his own. This is so hard to live by numbers and to be up one week and feel so down and anxious the next. I need stability and we can't figure out how to make that happen. I ask for prayers of strength and to give our son complete healing. We did receive news that we are being granted a Wish to go to Disney. We are very excited and that will be happening for us sometime in February. Hopefully all here will be solid, stable and we will feel better going. Please pray. Tracy and David. We must lift up to the Lord and ask for strength and peace.