Today ended up not being so quiet. I'll give more details later. This post is more like a world wide plea for anyone who cares about Daylon to pray for him. Tonight Daylon had a seizure, which lead to a CT that showed the left side of his brain is bleeding. The good news is that it is on top of his brain and not in his brain. The bad is that there is enough blood to put enough pressure to trigger seizures. He's going in for brain surgery as soon as his platelet count goes up (probably a few hours) so they can drain it. When I asked how much experience the neurosurgeon who would be preforming the surgery had with EB, the doctor asked, "what's EB?"when I told him he said,"Who cares about his skin at a time like this!?". Long story short, me and this guy got into it and he won. I just stood there crying so angry I could slug him, while he listed off the risk of different type of skin infections that could occur at the site. He really has no clue.
Please pray for Daylon. Pray that the surgery can be a success. Pray that his two "smaller" incision don't become two huge ones. Please pray for the doctors and all of the medical personnel attending them. I wish I could fly you all here to sit with Brian and I in the lobby. We'll feel you in spirit I'm sure. I'm so grateful that there are so many people who love our son. We love you.