Treading Along

I'm still waiting on photos from our trip and will post more over the weekend. We had a clinic visit on Monday and have been in contact several more times with GI. Things are slightly improved. When I tell you Simon has diarrhea it is not your typical viral thing that will be gone in one week and we continue to battle through it. We are approaching week 3 now. The worst part I think is that after he eats, and he seems hungry, but he gets these terrible stomach pains and well, then he goes and goes. sorry for the graphics. It seems to have thickened a bit and while its not as many times early in the day the late afternoon and evening are the busiest. We keep at the antibiotic that he will be on for a month before a two week off period and I think its helping some but wow its definately a work in progress. We got his vntrs back and I was a bit disappointed or worried I guess. While they seem virtually the same some of the numbers are down and its been this way the last few times. A few percent decline every time we do them. It makes no sense to me anymore. His igg level is up to 734 which for us is huge. No IVIG infusions again and that means hes making b cells which again are huge. The issue is that we don't know whose they are (simons or marrianas) and if they are functioning. So until we get all testing done in March I think it will be a scary thought in the back of my head. I realize now that the worry will continue whether we really want it to be there or not and we do try our best to carry on with the normal activiites of life.

I'd like to ask for special prayers today and through the weekend for our very dear friend Jacob who is battling GVHD and having a time of it. Please pray that the treatment course he is now on is the cure-all for him and his family so they can move forward for complete healing. While it seems you go through the hardest part with the transplant in the hospital and you come home to battle the biggest things of all. I think its easy to assume we are home and all is well but all transplant families battle such a long, long recovery wherein every day is a challenge and every day brings something new to deal with or to pray your way through. Its taxing really. My heart goes out to every transplant family no matter what type it is. I also ask that you continue to pray for Simon and his GI issues to resolve along with what appears to be another round of skin flaring up. Its vicious cycle. Have a good weekend. God Bless you all. Tracy