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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First Day of School

There has been a lot of stress and anxiousness preparing for Maggie’s first day of school.  Ours not hers.  We kept telling Maggie that she was going to be going to school and it was going to be fun.  She didn’t really care, but how could she?  She had never been and didn’t really understand, as far as we could tell. …

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Awareness for Rett

The video’s been shared a lot, so thank you for that. It’s at 110,000 views and it’s been pretty cool to see.  (If you haven’t seen it yet – http://bit.ly/Magnoliashope.)  I do wish we didn’t have to share it. I wish it was already a household name and already had significant funding. For example, I…

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Sharing the video is working

It made it into the Huffington Post – http://www.huffingtonpost.com/2014/08/11/rett-syndrome-video_n_5662406.html?1407771166 It just needs to continue to spread. Thanks for all your support. Here’s the link to the video so you can share it on Facebook, Twitter or whatever other social media channels you use. Bit.ly/MagnoliasHope…

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Share this video. Save Magnolia.

In December, our daughter, Magnolia was diagnosed with Rett Syndrome which is a rare neurological disorder. Because of Rett, scoliosis, seizures, feeding tube surgery, loss of mobility, loss of useful hand control and an inability to talk are all things she will possibly deal with over the course of her life. It happens randomly. It can…

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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…

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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…

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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…

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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…

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