I’m not sad. I’m angry with Rett Syndrome. We are in a very strange and confusing place as parents – not just parents of a beautiful child with special needs; not just parents of a brave girl with Rett Syndrome; but parents of a little girl who struggles through more than any little girl should Read more about Should we go to the ER?[…]
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 temperature. The last one was a new discovery. She’s always run a little hot, but Read more about Palm Springs[…]
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, watching what she can do, discussing what we saw that day and figuring out ways Read more about Hand over hand battle[…]
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 turned out quite as well. We didn’t get to see her GI doctor since she Read more about The Houston Report[…]
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 neurologist and gi doctor as well as meet a new physical medical rehabilitation doctor. It’ll Read more about Back to Houston[…]
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 table, they’d typically find something else to do, lest they be sandblasted. Don’t get me Read more about Playing With Others[…]
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 always respected and at various times believed it to be my dream job. I was Read more about Back to work[…]
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 what each day will bring. Will Maggie’s arms be out of control today, will she Read more about Mad scientist hyphenate / Producer[…]
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 the time that Rachel picked Maggie up and how excited Maggie was to see Rachel. Read more about Special thanks.[…]
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 know what each day will bring but we are learning to enjoy each day just Read more about The little victories[…]