On December 17, 2013, Magnolia was diagnosed with Rett Syndrome. That was five years ago. So much has happened in the last five years – Rett has progressed, science has gotten closer to a cure and we have gotten stronger. Continue Reading
A few months changed everything.
Our son Gray just turned 2 years old. He is energetic, talkative, smart, loves his sister and a blast. When Maggie turned 2 years old she was energetic, smart, loved her mommy and daddy, she was a blast and she Continue Reading
Diagnosis Anniversary
The anniversary of Maggie’s diagnosis was three weeks ago. I had been reading about other families and how that day is indelibly marked in their minds. Going through the day I didn’t think of it in the same way, in that Continue Reading
Palm Springs
A couple of weeks ago, we took a little weekend trip to the desert because nothing says relaxing like 109 degree temperatures. It started out auspiciously with Maggie unable to calm her body, communicate her wants or regulate her body Continue Reading
Hand over hand battle
For the longest time it has felt like we were losing the battle with hand function. Stopping any more loss of functions for Maggie has been yet another one of our primary goals, since the diagnosis. We spend most of everyday, Continue Reading
The Houston Report
This trip to Houston was a little different than the last one. At the last one we were nervous and everything turned out as good as could be expected. This time we weren’t nervous and we didn’t feel like it Continue Reading
Back to Houston
After a really great and relaxing week spent with family, swimming every day and getting eaten alive by mosquitos, we’re going back to Texas Children’s Hospital in Houston today – the mecca for Rett research. We’re going to see Maggie’s Continue Reading
Playing With Others
It’s been a regular struggle to get her to play with other kids. When she was younger, before the regression, she would play near them, but not necessarily with them. And when she started tossing sand out of the sand Continue Reading
Back to work
Rett Syndrome has changed my life in so many ways. Before the diagnosis, I was working at Jash, the digital studio that Sarah Silverman, Michael Cera, Reggie Watts, Tim and Eric started along with a bunch of other people I’ve Continue Reading
Mad scientist hyphenate / Producer
A blog written by my wife, Jenny. She is smarter and funnier than I am, so enjoy. When I wake up everyday, I usually pause, take a breath and hope for the best. The truth is we really don’t know Continue Reading
