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
Special thanks.
When Maggie was first born, our friends Dan and Rachel visited regularly, and made it a point to be a part of Maggie’s life; and Maggie (and the two of us) loves them for it. Her OT still talks about Continue Reading
The little victories
Maggie has days where everything seems to be connecting. She climbs better, she uses her hands more and she communicates more. Then there are other days that nothing seems to connect. This is the Apraxia part of Rett. We never Continue Reading
Butterfly day

One thing that I can always count on with Maggie is that if something doesn’t go as planned, it affects the entire day. I was alone with Maggie all weekend and thought going to our local children’s museum would be Continue Reading
Waiting for the other shoe to drop
I feel like that’s all we’re really doing. Every day we read about another girl with Rett who’s seizures are out of control, who had to get a feeding tube, who at 25 is still no further along in their Continue Reading
Sign this petition
It’s to get the White House to approve funding for Rett. We need loads more signatures, but you can only get there one at a time. https://petitions.whitehouse.gov/petition/provide-funding-rett-syndrome-research-devastating-neurological-condition/JPSWw7gP