VNTRS Up and Down

Well vntrs are back and they are down a bit. Actually week after week we have been experienceing a 1% decline in cells but we kept saying they are about the same. This week even though the overall is 94% (the 3 other cells tested are down below that) which may sound good/fine to all reading this it is concerning for us. We have been in a battle to maintain donor cells for well over a year now between two transplants and last summer all we did was worry about dropping donor cells. This summer our donor cell count is much higher but let me tell you the worry feels the same. We monitor 4 cells overall. They all are down and up and down. Its concerning that we cannot keep them stable and this week his cyclosporine (immune suppresant) is very low so we are not sure why he is not absorbing it. I had a lenghtly conversation/e-mail with our new immunologist and while we think we understand the disease process of NEMO it is not cut and dry and so much is to be learned. I was told today that Simons exposure to alot of people should be limited while he is on the immune suppresant and since that is what is keeping our donor cells here, it could be for a while. I am very saddened by all of this as I really felt we would be able to be a little more "normal" this summer and enjoy things a bit but after my conversations with our immunologist I do not feel safe for now to do that. I am getting a bit of mixed instruction as not all feel the same about what we can and cannot do. I was also told my girls should not get live virus while simon is on immune suppressant so that is another worry that the girls can't get their immunizations now. I am upping the immune suppressant tonight for the next week or so to hopefully stabalize the numbers and bring them up again. I ask that all of you continue to pray for Simon to have complete healing of at least 95% donor cells that stabalize and stick to it and that no infections enter his body to add to all of this confusion. We are not doing ivig for now. He may be producing a small amount on his own, but his own is not really up to par in fighting infection. The worry is that the rash he could get from ivig could be as bad as a burn victim and could be far worse than an infection he may catch and be treatable by antibiotic. Please pray for him to stay strong and healthy and for us to stay strong. Thank you and pass the prayer along. Love Tracy and David