Day 100 Approaching - Wednesday March 8

Hi everyone sorry I have been out of the loop with blogging for Simon lately, things seem crazier than usual. I spent the first half of last week trying to coordinate and figure out what to do for simons skin and his vomitting. I was e mailing with our immunologist in Washington at NIH and the doctors here regarding stopping meds and not stopping them and what to do about Simons persistent vomitting at the first meal of everyday, which sometimes he does not take until 11am. Thankfully we have a plan and it is going be ongoing for the next two weeks until Dr. Uzell at the NIH can get some cultures and stain studies back on Simons skin. They have detected some herpes virus in the studies here and we are doing what we have to to rule out microbacterial infections. Immune deficient kids are prone to herpes infections, not sure why but they are and it just seems to be in their system, so we will see. We also are now doing scheduled monthly ivig infusions to help his immune system fight off infections. We were doing these but not scheduled and its just better this way.

Day 100 is approaching, what does it mean, not much. You still have to be cautious as you are and not go out around alot of people and really its a milestone by numbers but not much else.

Dave took simon to clinic today and his counts are stable. VNTRS were drawn today so we will know in the next day or two where we stand with donor cells. We know marrianas strong cells are still 99% but say a prayer for us anyway. He actaully gained some weight and he is up to 22 pounds. It feels good to see that happen. God knows I try hard to get the calories in in spite of the vomitting. We can't wait for the day to not have g-tube feeds. I pray that day comes within the year.

He is sprouting two more fange looking teeth in the front and we see the dental specialist on the 19th of March to see what if any more are there and the shapes and what to do. I keep thinking by some miracle the back ones are normal so at least he can chew. Its taking a long time for them to come in. It will change his whole look but the personality is amazing.

So I picked him up a very adorable Easter outfit today because God willing we will be spending it with my sisters family and he needs to look cute for his first ever family holiday celebration. We also got our first pair of walking stride rites. You go my little simmy.

Well keep all the NEMO boys in your prayers and pray that little by little they all prevail and their affects from this horrible disease lessen. God Bless you All. Love Tracy and David