It’s been about 36 hours since my last post and I am exactly where I was when I wrote that, 35,000 feet above the middle of our country. A lot …
And Go!
My last post I shared my mixed emotions about all of our upcoming adventures. Now I sit, 35,000 feet up in the sky and it is nothing but sheer …
Everyone is excited for Boston, I’m not.
We’ve been talking about it for a while, all of the excitement about the IGF-1 trial in Boston. It started at an IRSF conference that I went to where I …
Dear Claire,
I can’t believe that you are turning 8 today. It seems like just yesterday that we were driving to the hospital, excited to hold you in our arms. I had …
Dance Break
All this posting is a bit intense. I don’t enjoy thinking about Rett Syndrome this much. One thing that I have learned in Rettland is that without fail, this song …
The Love of Another
The last few days have been incredibly challenging. Claire had two days of seizures and on the third day a cold that kept her from breathing through her nose, something …
Sisters
We will kick off the month with what I think is one of the more profound voices of Rett Syndrome, Chloe, she speaks for her sister. This is from a …