Father’s Day

We spent father’s day with my family on the East Coast. We’ve written about it before – how much she enjoys her cousins; and this trip was no different.  I think there’s a special bond with family that she understands on a visceral level.  It’s almost like she knows they won’t judge her and they…

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Last Day Of School

Year 1 of school is in the books.  Hard to believe how difficult a decision it was for us to even send her to school.  We were so nervous that she would lose more of her hand function, more of her speech, that without us pushing her every single minute, she would regress. That’s what…

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Connecticut Commie…

A friend from high school interviewed me for her blog.  As much as I talk about Rett Syndrome, I’m always grateful when someone else actually asks me to. http://ctcommie.blogspot.com/2015/05/a-fathers-advocacy-for-rett-syndrome.html…

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Memorial Day and Communication

We’ve been trialling a different eye gaze computer for the last few weeks.  Susan Norwell, one of the respected experts in Rett Syndrome communication, came to visit and gave us a real kick in the pants – in a good way (video forthcoming).  We’ve become very adept at reading Maggie, understanding what she wants, understanding what…

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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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