The Number Remain

We received the vntrs back late today. We have been on pins and needles and waiting five days to hear that the percentage is basically unchanged has kept our stomachs in knots. The percentage is at 20% still overall. At least they did not drop but we were hoping they would go up with stopping one of the immune suppresants. The bad news is Simons skin is flaring up with the redness and itching. Hes definately more uncomfortable and scratching alot. He is not eating that well and I'm trying to give him some table foods because the baby foods are not going over well at all at this point. So the journey goes one. I have a visit in stem cell on Friday and the immunologist from NIH in Washington is in and will see him as well Friday so we will have to wait and see how the next few weeks pan out. Keep praying. We have been in contact with yet another family who's 6 month old son was diagnosed with NEMO and he and his family now are suffering through the same heartbreak we have and continue to experience. These boys endure so much and we pray they all come out of this with healthy NEMO and can live normal lives. The girls are enjoying us all being home and almost daily Marriana asks if she will have to give more cells. Its hard to be unable to go places with them but at least we are all under one roof. God Bless you all and keep praying. The power of prayer should prevail. take care Tracy and David.