Memorial Day weekend

We had a packed weekend, which I love. Saturday, Magnolia was to have gymnastics in the morning and Gray asked to go climb a mountain. So Mags and I had fun going to gymnastics while AJ took Gray to hike – everybody was happy. During the afternoon both kids were supposed to have swim lessons. Read more about Memorial Day weekend[…]

Diagnosis day – four years with Rett Syndrome

Maggie was diagnosed on  12/17/2013. This day is known as D-day in the world of Rett. Diagnosis day. This will be year 4 since diagnosis. Maggie is now 7 years old. Life is different now. Four years ago, Maggie hadn’t lost many skills. She had slowed in development but regression hadn’t fully begun, yet. The Read more about Diagnosis day – four years with Rett Syndrome[…]

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 temperature.  The last one was a new discovery.  She’s always run a little hot, but Read more about Palm Springs[…]

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, watching what she can do, discussing what we saw that day and figuring out ways Read more about Hand over hand battle[…]

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 turned out quite as well. We didn’t get to see her GI doctor since she Read more about The Houston Report[…]

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 neurologist and gi doctor as well as meet a new physical medical rehabilitation doctor.  It’ll Read more about Back to Houston[…]

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 table, they’d typically find something else to do, lest they be sandblasted.  Don’t get me Read more about Playing With Others[…]

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 always respected  and at various times believed it to be my dream job.  I was Read more about Back to work[…]

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 what each day will bring. Will Maggie’s arms be out of control today, will she Read more about Mad scientist hyphenate / Producer[…]