Hand over hand battle

Your ads will be inserted here byEasy Plugin for AdSense.Please go to the plugin admin page toPaste your ad code OR Suppress this ad slot. 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[…]

The Houston Report

Your ads will be inserted here byEasy Plugin for AdSense.Please go to the plugin admin page toPaste your ad code OR Suppress this ad slot. 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[…]

Back to Houston

Your ads will be inserted here byEasy Plugin for AdSense.Please go to the plugin admin page toPaste your ad code OR Suppress this ad slot. 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 –[…]

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[…]

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[…]

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[…]

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 the time that Rachel picked Maggie up and how excited Maggie was to see Rachel.[…]

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 know what each day will bring but we are learning to enjoy each day just[…]

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 a fun day – plus they were releasing a bunch of butterflies on this day.[…]

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 progress than Maggie, or for whom the worst has happened. With Maggie, I’ve convinced myself[…]