It's so quiet- They are safely in D.C.

Johnathan and his parents arrived safely in Washington DC this afternoon. I miss them already :(

They are out there so that Johnathan can participate in the Natural History Study. I am pretty sure this is the correct link to the study but will edit later if not.
He will be getting a baseline before he starts his new medication- Zavesca(R) (miglustat). He will start that when he gets back and we are praying that not only it slows the process of the disease down until we find a cure, but that he has little to NO side effects from it.
This week Johnathan will be getting many different tests done to see where he is at. This is for the trial use so when he gets back his own doctors will also be doing tests later in April.

I am hoping things go smoothly out there and J doesn't get too upset from all that :(
And I am thinking of his folks :'(