My email chain with the school district:

Names have been removed to protect everyone. I sent this first letter to the PT and OT assessor. Hi…, After some consideration, and in part, because I didn’t know I was supposed to have the discussion at the IEP, I feel like I have to strongly disagree with your recommendation of only 120 minutes/year of pt,…

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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…

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IEP

IEPs are dumb.  That’s the school district process whereby people who have never met Maggie spend 30 minutes with her and evaluate all of the things she can and cannot do and make recommendations about how she’s going to get better.  I mean, how is that even possible? You go, sit in a room and…

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Event Wrap Up Brings Us to…

The auction I put together ended up raising over $30,000 and the event it was a part of raised over $700k – 96% of that goes directly to fund research. That’s a spectacular number and I’m so honored to be a part of something that’s giving so much back. Unfortunately, it’s still just the tip…

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Traveling

Traveling is always harder than it needs to be, with more thought than should be required needing to go in to what to bring, how she’ll be comfortable, what will entertain her on the plane, how will we keep her entertained when we’re there, what kind of sleeping arrangements will there be, and how will…

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Boston – IGF-1 Clinical trial

A clinical trial for Rett Syndrome called us over the weekend to let us know that a spot had opened up for Maggie.  She’d be the 30th girl of 30 girls in the trial.  Our emotions are all over the place.  This is something we want to do.  We need to do for her.  When we…

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October is Rett Awareness Month

We found out October was Rett Awareness month when we first were diagnosed and we’ve been talking about it for months.  What are we going to do?  How will we contribute to Rett Awareness Month? I had grandiose plans, but am glad I’m more or less just a participant in a number of events.  Awareness doesn’t…

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I dance because she can’t

I’ve been trying to get a fundraiser of my own going since we found out about Maggie. The idea started out as a rather large scale collaboration between my old company, Jash, some old friends at Social Media Week, and my new business partner who also runs Comedy Gives Back.  Then it was going to…

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Playing Games

Finding a game that Maggie is willing to play has been impossible.  I don’t even mean board games – that’s not even something that’s worth trying.  Her attention would never hold and her hands wouldn’t let her manipulate any spinner or dice.  Before her regression she would play memory games, but she doesn’t do that…

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Just a normal Labor Day

We traveled to New York for the Labor Day weekend to see my parents and Maggie’s cousins, uncles and aunts for a weekend at my parents house, all under one roof.  We did the same thing a few summers ago, and it was great – bbqs and lobstah pahties, collecting shells by the beach and more…

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