March 21, 2006 at 01:56 PM EST

March 21, 2006 at 01:56 PM EST
Hello everyone. Sorry I've been out of touch with all of you its been a few days of waiting and watching with Simons skin. He has been having the redness and itchy peeling skin return and go through its cycles. We have the doctors here telling us one thing and my immunologist at the NIH in Washington telling us something else so my job has been to get them together and talk, which finally happened last night This is a full time job you know. We are very fortunate that Dr. Orange who is at CHOP (Childrens Hospital of Philadelphia)who discovered alot of the NEMO mutations and is the NEMO expert has also been conversing with all of our doctors. So we feel confident that everything that can be done for Simon is in the works. Simons counts continue to fluctuate. One day they are up, another down. Its hard to watch that happen and wonder all day everyday. Dave and I actually got to spend an hour alone at potbellys yesterday, whew big day out, and we talked alot about how that is the worst part, the unknown what is going on inside of Simon. I've done alot of research in the last few days on things they have been telling me and things I have just discovered in my research and I"m starting, barely, staring to understand all of this better. Of course, just when I feel that way, something new is presented.

Simons ANC levels are doing well. HOpefully we are on our way to engrafting. That will be told better after his next VNTR/DNA draw this wednesday to see if the amount of cells that are Marrianas has gone up. Please tonight, tomorrow pray for that for Simon and for us. It is what we need most and hope to start seeing the light so we can try to plan when he can come home. I miss our home. Look around your house today and see all the things that bring you comfort to be there and just relish in the thought that you are amongst all of the things that bring you happiness. Its something sad to miss and long for.

Today the girls are with their friend Tessa for a few hours of playtime (God Bless you Terri for taking them in our bind today - hope they are behaving). This fills my heart with joy because I know the girls love playing with Tessa and they get to feel some sense of normalcy.

Thank you all for the meals, the calls (which are always welcome), the thoughts, prayers and friendship. We truly appreciate it all. God Bless Tracy and David