Art projects

Every time I pick up Maggie from school I inspect her art folder.  She has extremely limited use of her hands and she can’t draw or paint at this point.  We’re working on it, but she can’t.  So, every time I open her folder, it is with some sadness because I know this is all I’m…

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Bike Riding

Maggie can’t pedal a bike – but Jenny’s mission has been to get her to experience bike riding one way or another.   There was a scooter she never quite got into.  We tried a tricycle that worked for a little bit, though we had to velcro her feet to the pedals.  Her legs are too…

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Fender Bender and #givingtuesday

Since Maggie’s diagnosis, we have gotten used to unwanted news and adapting our lives. So much so, news that would send most people into a panic, AJ and I tend to just say “It is what it is.” So getting in a car accident (everyone’s ok) yesterday really was just another “It is what it is”. I…

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Finding things to be thankful for…

As the holidays roll around I realize it’s almost been a year since we got the diagnosis.  We’ve gone through a lot of emotion this year and hardship and change, but still, it’s easy to find things to be thankful for – our families, our friends, new and old, even Maggie’s health.  While she’s been…

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NNZ trial press report released

This past week has been a roller coaster of emotions. Last Tuesday November 12,2014, two days after Maggie’s 4th birthday. Neuren Pharmaceuticals released the information regarding the NNZ trial for Rett Syndrome. This is a big deal. There are several trials going on right now, which is great, but the process of drug trials is…

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Maggie’s First Seizure

I posted this picture a few weeks ago on Facebook – what felt like a lazy Sunday.  This was at 9am.  She fell asleep right after this for about two and a half hours. Somewhere in the middle of that nap I realized what it really was.  Her head had fallen forward in her stroller and she was…

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Beauty Marks

Sorry to be overposting this week, but a lot is going on.  Our good friends Kate and Joey from Mr. Kate, a lifestyle brand, are just uber creative and smart and savvy and good looking.  And they’re launching a new set of Beauty Marks this week that features a large Magnolia flower.  They’ve pledged $1…

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Maggie on the news

The news did a story on us back in August when we put out the video (bit.ly/magnoliashope).  It airs Wednesday, November 12th, on KCal9 at 10:00 PM.  If you’re not local, here’s the story: http://losangeles.cbslocal.com/2014/11/12/couple-determined-to-find-cure-for-daughters-rare-condition/ I’m not sure what we said at this point, or if they caught Jenny or me crying on the news.  But I’m…

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Birthday Celebration

Last year we were on the east coast for Maggie’s birthday and didn’t really have the opportunity to do a big party.  Plus at 3, would she really care?  This year, after a lot of uncertainty, we decided to give her a real party.  We spent a week and change talking to her about it…

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Halloween

We didn’t know how Halloween was going to go, this year.  It’s really only the second time she would have been  trick or treating since she’s been born.  It was too hectic last year.  And the year before we went, but she barely cared.  So this year was technically the first try at it. It’s…

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