In many ways, Emelyn’s just like any other six year old. She loves kindergarten, the school bus, and all of her friends and teachers. She’s ...

Every so often I have a dream where I’m talking to Emelyn. I wake up not remembering what we talked about, just that we were talking. This i...

I can look back on Emelyn’s first year and remember the heartache of missed milestones and the fear of an unknown future—for her and ...

Last month our family traveled to Philadelphia to take part in the 4th annual DDX3X conference. As I’ve written in previous posts, these co...

If you've ever sat through an IEP (individualized education plan) meeting, you've likely found yourself confused, determined, frustr...

Two weeks ago, we headed to Children’s Hospital of Pittsburgh of UPMC  (CHP) for a natural history study. It was a great trip and it’s tak...

Confession: This blog exists for many reasons and one of those reasons isn’t all that altruistic. Here are the five reasons this blog exis...