Gavin got off to school today in a great mood. He doesn’t like to talk on the way to school all the time. What he was saying didn’t make much sense. They were like strung together incoherent thoughts. When we got to school he got out of the car and ran to the door.

Just watching him I realize we are loosing more of him again. I don’t know how he didn’t just fall over while running to the door. It’s very clear the his body and brain are not in sync with each other. He has kind of like a “rag doll” appearance when he is moving. He’s extremely limp and uncoordinated (and way more so then usual). I don’t know what we are going to do. His doctors constantly tell us that we have done everything we can. They say we have gone so far above and beyond and nothing ever sticks with him.

Of course, as parents we feel like we haven’t done enough. However, lately, I’m slowly beginning to see what they are saying.

LT