April 01, 2006 at 10:29 PM EST

April 01, 2006 at 10:29 PM EST
Hi everyone. I don't even know what to say today except that Dave and I feel so sad. Simon is having another day of irritability and is completely pasty white from the lack of red blood cells in his body. We found out today that his red cells are being eaten up as fast as he is producing them and they are not sure if it is marrianas cells doing it or his cells. This is a potential problem for the transplant. Dave and I struggled today to try and understand it but its not registering with us how this is going to play out. They told us they may need to put him on another immune suppresant if it is in fact marrianas cells doing the attacking. They are giving him a transfusion as I type this, yes at 9 pm and will run until almost 1 am with vitals taken every 15 minutes. Can I say HELLO? he is a 7 month old baby who needs to sleep, why are we starting this so late in the day? someone tell me. Everytime Simon has gotton a transfusion (this will be his 3rd) he has had some flare ups in his skin issues. So I pray that does not happen because his skin looks pretty good right now with the exception of being dry and flaky. We are hoping the red cells give him a boost but it will be a temporary fix to the issues. He also has been testing positive again for gram positive infection for the last couple of days. This puts us up to 5 bumps in the road for this week. I don't even know what else to do at this point. Dave and I can't even think of questions to ask the doctors. Simons head is still puffed up and he is barely holding down any food. It has to get better. Please pray for Simon. Our hearts are breaking and we can't even think of anything beyond this. I took the girls to see Dave for lunch because he felt so lonely and sad. We cry to each other on the phone all the time and feel so helpless. The time away from the hospital was good for him but as we sat at lunch we both said, we feel incomplete sitting there with the girls and guilty to be out eating without Simon. Please, please pray for us for strength and for Simon and the girls so they can feel our love even though we cannot be a true family right now. God Bless you all. Tracy and David