October 2006. Asleep in bed with dad.
We’re still waiting on appointment times at Duke. Dr. Stockler just sent down Trey’s tests to Duke and UNC Thursday, so we’re waiting for the doctors down there to go over Trey’s tests and make decisions regarding which ones they want to redo…we hope not too many as the cost is high and we don’t want to stress Trey out more than we have to. I’ve also been starting to read the journals of other parents whose kids have gotten CBT. I cannot believe the strength they have. Every day is spent praying that this fever, or this rash, or this infection, or this mood does not mean something is wrong. They spend every day praying for their kid’s life. It is unbelievable, even to someone who is considering the procedure. Totally surreal. But then they make it through, and seemingly, everything is great. The kids are progressing, gaining language and skills, and from pictures, they don’t even really look like they have Hunter’s anymore. And tests show that the enzyme is everywhere in the body, even the brain. So much to think about…