Our meeting with Ronni, Jackson's Genetic Neurologist, went pretty well. He seems unconcerned about the possibility of AT, and feels confident that we will receive a negative result when we do the genetic screening. And we will be doing a screening for AT as well as the Filamin A genetic mutation. Friday, I'll be dashing down to Hopkins first thing in the morning for Jackson's echocardiogram, blood draw, and physical therapy session at Kennedy Krieger. The results of the blood draw won't be available for three to four weeks.

We drove the kids to my parent's house in Kentucky for the long weekend. It was a nice reprieve from the daily grind, and we were fortunate enough to enjoy a visit from my brother and his family. While we were there we received some heartbreaking news. Our friends, Rick and Amy Bucher, lost their three year old daughter to neuroblastoma. Arden battled fiercely for the last ten months while Rick and Amy researched and fought for every treatment possible. In the end, the disease was just too much. We are deeply, deeply saddened. I could blog about this for a very long time. Amy and RIck are truly amazing people and Arden was a little ray of pure sunshine. But you would be better served to read about their unflappable spirit yourself. Arden's page is linked on my blog page - it will be time well spent I assure you.

The sadness of Arden's passing is more overwhelming than I ever thought it would be. Couple that (although this pales in comparison) with the newest round of information about Jack, and I have found myself in a bit of a melancholy funk. Not exactly sad, but far from contentment.