Time Changes Nothing For Simon

Its another numbers sorda day here for us. I talked with the drs. and found out last week that Simons vntrs were only 17% total, 54% T-cells of donor cells, which is the one they are keeping their eye on a little more. I was disappointed although not surprised. Last week we had a bout of NEMO skin condition and we had a biopsy done which showed no infections and basically that it was the NEMO causing his skin to flare up. We had hoped that was all behind Simon. He was pretty miserable but it started to clear up and is now mostly very very dry and itchy which we are trying to take care of with creams and baths and such. We spoke with Dr. Uzell at NIH and she is going to see if we can come there for further work up to see if the transplant will need to be redone. We are heartbroken here everyday. We pray for that miracle that Simons immune system is doing its job but he is vomitting alot in the morning and waking up before we can get to bed and vomitting at night. We just don't know what to do. He doesn't seem his happy self at all today. We were able to take the kids and get away for 3 days up to Green Lake WI to relax, which was very nice. We try to maintain some normalcy and at the same time have all of this in a cloud over our heads. Please keep praying for Simon that this can be behind him sooner rather than later. He is having major GI issues which we had hoped would be cured by the transplant and the addition of Marriana's good cells. This is not the case and so far has not been the case for other NEMO boys. I don't know how these families have gotton through all of the years of this, we feel we are on our last legs some days. God Bless Jack who is doing really well post transplant and home enjoying things summer should hold for children. I look to the Hagelins for guidance as they have been through it and continue to strive for things to be better for Jack as well. As if the transplant in not hard enough, you still are left with GI issues afterwards which to me, has been the most challenging issue of all of this. To see your baby throw up everyday is heartbreaking and then not want to eat or drink because of it. AFter all of this I had to take the girls to their 4 year check up and this one was a two shot, tb test and a finger prick, well, it was not fun for them and they cried and broke my heart but two suckers and a bag of cheetos later, all was forgotton. Kids are great arnt' they. I long for the days I can acutally take Simon in for his immunization shots. Please pray for Simon and for strength for us. God Bless,