Doctor and school updates

We went to see her neurologist last week. I keep thinking doctors are for making your kids better. But Rett doctors are not. They’re for making sure your kid doesn’t get worse. It’s a bit of a change for someone like me who is the first to head to a doctor with any illness or…

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Ragnar Recap, San Diego

My friend Nick and I drove a van for 26 hours for the Ragnar relay race that took a team of six women from Huntington Beach to San Diego – 182 miles.  Each mile was dedicated to a girl with Rett Syndrome.  Going in I had no idea what to expect, other than it was…

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Second installment – Annie Oakley

    Here’s the second installment of Jenny’s art concept with photo by Eric Guttierrez and photoshopping by me.  My dad suggested I make a calendar of these and sell them to raise money for Rett.  But, he’d be one of very few who would buy a calendar of pictures of Maggie.  So, if you…

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#dance4Rett

This is embarrassing to post, but it’d be more embarrassing to do nothing. Rettsyndrome.org is launching a campaign to get people involved – Here’s all they ask – Film your favorite dance. Upload it to Youtube or Vimeo. Share it on social media including a ‪#‎dance4rett‬ and dance4rett.org. Ask 3 friends to do the same…

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Ragnar Race

This Friday I’m participating in the Ragnar Race.  That’s an overnight team relay running race.  A team of women run 180 miles in honor of 180 girls with Rett Syndrome.  There are other teams, but, that’s the team I’m on.  It takes them about 28 hours.  It’s impressive and herculaen that people can accomplish such…

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Art Project

Jenny had this idea about showing off Maggie as a strong woman, so we had our friend Eric Guttierez (fka Mav, fka the funky blessed) come over and take some photos.  Here’s a picture from that day – this is Maggie as Amelia Earhart…I’m still working on photoshopping the rest, but I’ll send those out…

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More FUNdraising

I produced a show last weekend called First Act to raise money for Rett Syndrome research.  A bunch of comedians came and performed old dated jokes they don’t get to tell anymore.  Basically, the thought was that with Rett Syndrome, girls lose the ability to do things they used to do.  So, I produced this show around…

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YouTube

Hello family and friends.  I’m not sure you knew about this, but I’ve been keeping a video log of Maggie’s progress as well, a vlog if you will.  I put up videos of amazing things she’s doing and talk about what we’re going through as well – usually with her. You can check it out at…

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Frozen

Frozen has been a bit of a touchstone for us.  When it came out and little girls around the world flipped over it, Maggie didn’t care.  She’s never been able to sit still for long enough to enjoy a movie and it always felt like we were torturing her by trying to get her to watch…

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