It’s been a crazy to think back over the whole arch as we finish the final time point for this trial. I was taken back to when we were first …
Boston Doesn’t Suck but Rett Syndrome Does
I really wanted to beat Rett syndrome. I wanted to out plan it. I didn’t realize it at the start but I feel confident saying that as I look back. …
What Makes it Bearable
I’ve got so much that I want to say about this trip but I just can’t wrap my brain around the words yet. It has been very emotional and I …
The Why
Yesterday we had a fairly routine visit to Katie’s Clinic for Rett Syndrome. We met with multiple specialist who all agreed that we were doing everything correctly that we could …
Hope
You know that week when it’s all so much more than you can handle that you just shut down, I’m having that week. Participating in the trial is taking it’s …
Well Done Captain Awesome
Things have been fairly eventful and I’ve wanted to write but haven’t had the time and energy in the same moment. Eventually I will get back to stories from our …
No Safe Adventures
Can’t believe that I am already sitting here, on the plane, on the last leg of our 10 day adventure to Boston. After all, time flies when you are having …