I have been doing a lot of thinking about the clinical study at TCH. I have weighed the pros and cons over and over in my head, and I just don't feel that now is the right time to go.

We would be fitting months of testing in to one week, and I think that it would be too much for Blake right now. It would be so scary and stressful and overwhelming for him. Most of the tests will have to be repeated every couple years anyway; by that time he will be 3 or 4 and he will be able to understand much more of what is happening. It will also be easier for them to evaluate his speech/cognitive abilities at that point.

I have really struggled with this decision but I feel comfortable that this is the right choice. We are hoping that we will be able to make the PTLS conference in June 2009, where we will have the opportunity to meet other PTLS families and learn much more about this condition.

Now if you'll excuse me I have to pick up all the Kleenex that Blakie just emptied all over the floor.