So much for the good news

It seems as if we are not entitled to good news unless the bad comes along. We had our weekly appt on Friday and this time the dr. was speechless. Never a good thing. Annaliese has been suffering diaper rashes for about 2 weeks. She has never had a problem before and we have not changed anything in the diapering dept. The dr. said that it could be from the heat (it has been 112 here lately) and that is couldnt be from her neutropenia (more side effects) because her levels are so high. They gave her some nystan (sp) to help her. After we did her blood draw, and much to our dismay, her neutrophil level is at zero again. The dr. didnt have a clue why as they expected her to still have at least 7000 neutrophils. She now has defied everything they have perdicted of her. She is NOT a textbook case and now they are not sure what to do with her. So we have resumed her neupogen and put into place our "bubble baby" rules again. We are hopeful that things will start to get better for her as we need to have things figured out before the boys start back to school. We all know what happens when the kiddos go back to school. I cringe to think about it. Also, her genetic testing has gone missing. Yes missing. The dr never recieved her results and so they have requested them from the hospital STAT and well as far as I know they have not recieved them. I went in last week to get copies of her records that would have included these results only to be told Friday that they havent even started to copy her chart yet. To say the least we are very fed up with everything right now and would just love to get some good news.