Continue Praying for our Family

So sorry it has been so long since I have updated our blog, but quite honestly the last few months have been very hard emotionally. I think once we hit being here a year we all sort of went numb not knowing when we were ever going to go home. We also found out that Wright's gvhd (graft versus host disease) was chronic in both his liver and skin.This was VERY hard for us to swallow.  Everytime we tried weaning his immunosuppressives we would end up in the hospital with a fever or gvhd flare. What does this all mean? Well, we really dont know at this point except he will likely remain on immunosuppressives for a very long time. He is not in pain which is a complete blessing and he has a good appetite which sometimes is not the case with liver gvhd. We have so many things to be thankful for inspite of all the challenges we have faced and will continue to face.  Our goal is to get Wright stable enough to come home. Our visits home have been the absolute best medicine for him physically and mentally. Once home we will be able to go to UNC weekly to see a BMT physician that left Cincinnatti Children's a year ago. We will travel to Cincinnati monthly. Wright will receive homebound school, physical therapy, occupational therapy and speech therapy at home for next few years.  Our biggest concern is going to be keeping him well and keeping old viruses from reactivating while we continue to suppress his immune system to settle his active t cells down.  Also, preserving organ function. His liver has taken a real hit and sometimes gvhd can cause permanent damage to the liver. Our liver doctor reassured us he would be eligible for a liver transplant should he go into liver failure. Not sure how "reassured" we felt after that appointment. The thought of another transplant made us sick to our stomachs. His kidneys also have had some trouble so we have to constantly monitor them. On a more positive note his bone denisty scan was surprisingly on the curve which is almost unheard of with all the steroids he has had in the past year and he is actually headed towards his projected growth path. His last PT evaluation was good as well. His therapist really feels once home he will blossom. So what we need from all of you......please pray for our family to remain strong.....pray for us to go home soon.....pray for our transition back together as a family to be seamless. We need to be together more than anything! I completely trust God and His plans for our family and I know His timing is perfect!