April 25, 2006 at 03:49 PM EDT

April 25, 2006 at 03:49 PM EDT
Whew - Today we breathe. Just back from the ASCU where they told us Simons counts went up 10. We are up to 32% this week overall. His T-cells up to 68% Marrs so we are taking this as a good day and smiling in its presence. They are going to start slowly tapering the steroid starting with tonights dose. We are happy about this but nervously concerned because the steroids are helping Simons skin as well as his digestive system. We know he will be on some of the meds for a good year to prevent him from getting certain infections. He is extremely happy and having fun. We received visits from three of his favorite nurses in the ASCU clinic today and it brought a big smile to Simons face as well as mine. We continue to pray and hope that things will progress upward from here on out. We live on hope and prayer and are taking the good days when they are here. Lita is here today so we are going to have a nice dinner and pretend everything is normal. Simon is saying da, da, da all the time and Dave seems to think hes really asking for him, men are so naive. ha ha. Well we get vntr draws again on Friday so the anxiety goes on but the hope prevails. God Bless you all. Take care and enjoy your family and friends. That is something I miss more than anything. Not being able to just see those you love and miss and share your special baby with everyone. This page helps me to do that some at least. Take care and keep the prayers coming for our family. Thanks. Tracy and David