I'm feeling very sad and frustrated today. I cannot even begin to tell you how this is taking its toll on all of us. Simon is not any better today, maybe worse. His diarrhea was in full force last night and I was up every hour checking his diaper. Today he is wiped out. He has no energy and neither do I. I have contacted doctors in Washington and Philly to try and see if there is anything we can give him to help. I was told by Dr. Orange, the NEMO expert, that this seems to be an emerging problem for the NEMO boys. Well thats just great. We always knew the transplant would not fix the GI only the immune system but you hoped it would get better. We've had periods of normalcy in the GI area and then whamo out of nowhere comes 5 weeks of this. I ask that you continue to pray for Simon to have relief. He really looks like he is dwindling away to me. I give him a bath and change him and he looks so thin. Its so heartbreaking. We are upping the calories in the TPN tonight and I am only giving him fluids today. Please pray we start to see improvement and find some answers. thanks tracy