Today is the day! I know for most families VBS is no big deal. For us it is momentous and a leap of faith. I have pretty much never left Alex in anyone's care for 3 hours. Over the last 5 years our church has been really special to us. They have taken us in and made us part of the family. This means that they have gone above and beyond to include Alex and ensure his safety. His first year of Sunday school when he was three, they stopped having snack in Alex's class so Alex wouldn't feel left out! Last year, they provided meals and gift cards on one of our breaks from the hospital. They sent emails and gifts when we were in the hospital. They have prayed for us. So when I approached them about VBS, they stood welcoming us with open arms. Once again they have been more then accomodating going so far as to remove popcorn from the snack schedule so Alex would be safe.
So as we head out the door this morning, it is with hope for a fun adn safe week and gratitude to be part of a loving church with so many awesome people who care about us.
Please pray for Alex to stay healthy and for his energy to hold through the next few days so he can enjoy this time with his friends.
On a health update...I know I have been pretty vague about what is going on. I needed a few days to process. Alex's liver numbers have been trending up for about 6 weeks. They have now reached a level where the GI team is concerned. They fear he may have autoimmune hepatitis. Basically, Alex's immune system attacking his liver and causing inflammation. Obviously, not a good thing. The treatments are not great either (prednisone or a med that has pancreatitis as one of the side effects). We have run 4 labs. The first was to rule out viral hepatitis. Not surprisingly that was negative. The second was an ANA. A marker for autoimmune diseases. It came back negative and I got hopeful...that is until I read the fine print where it clearly stated that a negative does not rule out autoimmune hepatitis. And so we wait! The final two labs that will give a clearer picture can take between 4 days and 4 weeks. UGGGG! I am so not patient. I will keep you updated as we learn more.