Just a quick note. We went to clinic today and drew labs. His chemistry seems fine. We wait on igg and vntrs as always. Simon has developed this large lesion on his buttocks and I am hoping it resolves in the next day or so. I am not kidding you when I say that it seems like Simons skin does okay and the day we go into clinic it seems to flare up with something. I think its the lighting there. They drew extra labs today to see if some levels we never test are high and it could point to his skin being incontengi pigmenti (IP) which has been discussed before, I had it as an toddler and hopefully it will get better as time goes on. He does have the brown pigment left on the skin from many of the episodes which is very characteristic of it.

It is such a challenge to get the girls to school and then downtown by 9:30 that I cannot wait for the girls to be out. A few more weeks and we are home free for summer. We will be attending the Immune Deficiency Foundation conference in St. Louis end of June and will be able to meet two of our other NEMO families which we talk to quite a bit so we are very excited and pray Simon is well enough and strong enough to make the trip as Dr. Orange is speaking on behalf of NEMO and we are excited for him to meet Simon.

I will keep you posted on vntrs and igg and if we are to do ivig which I am pushing. I'm trying to get him on milk and off the formula and hoping these skin bumps are not related to that. Anyway, we don't go back until next Thursday due to the holiday so pray all goes well with numbers and no infections. I'll keep you posted on this weeks when I get them. Enjoy the week and the holiday weekend. Tracy and David