They thought they would teach their daughter about the world Instead they have to teach the world about their daughter
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
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
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
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
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
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
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
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
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
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
