Okay this is a difficult update for me to write so bear with me. Alot has been going on the last 24+ hours. We have been very concerned with Simons g-tube site as it has gotton increasingly worse. The docs tell us its because he has a white count coming back but to listen to him scream in pain every time it is touched or everytime you hook him up to feeds and when he tries to sleep and the mickey gets pulled on him is heart breaking. The site is red, swollen and just yucky. Today Dave and I felt it necessary that we both be there when the doctors came for their rounds. We were told they agree something more needed to be done so we stopped the antibiotic he has been on and started something new in the hope that this will push the infection over the edge along with the white cells and get ride of it once and for all. Pray for that. We are still dealing with the vomitting twice a night and "we are hopeful" as Dr. Duerst constantly says, that once the infection calms down that will stop as Simons stomach starts to heal. I don't know if I"m just anxious or if it just feels like this has gone on forever but seeing Simon hurting is a hard thing to do when he is such a happy boy all the time.

With hope that we are on a path to healing for the g-tube we have been hit with something even more scary today. I noticed when I first walked into his room today that the left side of his head (which you can see perfectly now b/c he is completely bald) had a raised area on it. When I touched it it definately was filled with fluid. Immediately I thought to the fall he had almost two weeks ago and I panicked. The doctors looked it over and agreeed, it has fluid in it. So tomorrow he is tenatively set up for a CT scan. I've wanted one since he fell but they felt it was not necessary since he did not exhibit signs of mental distress. So this sits in the pit of my stomach and again, we ask that you pray that this fluid gets reabsorded overnight and that it is nothing to worry about. He has had the pseudo tumors in the past but they do not think this is that b/c of where it is located. Again, I pray to God to watch over us.

I am almost scared to post this but it is good news, even though somewhat premature. They decided to do vntrs yesterday with a white count of .6. Usually you cannot do it until the WBC are over 1.0 but they drew them and processed them. Today we were told that they were not able to measure the t-cell, b-cell, myloid etc counts but the WBC came back 99% donor (Marrianas) cells. So I"m not celebrating yet but it is a step in the right directon and there is a long way to go to keep them but we say to all of you, thank you for the prayers, they are working and we need to ask that you keep them up. We need all the praying to continue and the strength to get us all through it. I will feel better once they can measure the b, t and other cells that are essential for immune function.

On a "star" for the day note, Simon made the Oak Leaves (Oak Park/River Forests local newspaper) with an article on page 9 about him and a very giving family in Oak Park that is donating part of their sales from their company to cure4simon. We thank you for that and ask you to check out the adorable photo of Simon in that paper.

Dave and I want to thank all of you for everything. The prayers, donations to cure4simon, the gift cards, time, shopping, gifts for Christmas and the donations to the perfect dinner. They have meant so much to us and while I have very good intentions of sending each and every one of you a thank you note, please know that I will do my best to get them out when we free up a little time. But everything is so much appreciated by our family. God Bless each of you and Please KEEP PRAYING for Marrianas counts to stay strong and steadfast forever and for Simons head to be okay. Love Tracy and David