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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Back to normal

For the last two months I’ve been back at work which is to say I haven’t been around that much for Maggie.  I’ve missed dinners and breakfasts and therapies and school drop offs.  I feel like she’s growing up so quick and I don’t like missing any of it. It hasn’t been easy to be…

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FDA Update

Over the past couple of months we have been holding our breaths as results from the FDA trail of a drug formerly known as NNZ-2566 were coming out.  This is the drug closest to market for Rett Syndrome and would be the first ever treatment of the actual disease.  Over the weekend, the FDA denied…

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“Go Potty”

We had been potty training when Maggie started going through regression.  We hadn’t made it to wearing panties but she was understanding the concept.  After we were diagnosed, we kept sitting Maggie on the potty. With everything else happening with Rett Syndrome…we kept asking ourselves.  Is it possible to potty train a kid with Rett…

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The waiting game

For the past 45 days, we have been waiting to hear if the FDA was going to approve NNZ-2566 with Orphan Drug Status.  Everyday I (Jenny) have thought about it anxiously, even on days I tried not to think about it, I thought about it. I stalked the Rett family pages, I stalked parents that…

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Swims with the fishes

For Maggie’s birthday in November, we wanted to get her a fish tank.  The problem is presents are always difficult because it’s unlikely she gets excited about any present, and as a result, it’s hard for us to get excited about it.  There are tons of stories of parents of kids with special needs crying in…

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New treatments on the horizon

A year before Maggie was diagnosed, there were no treatments for Rett Syndrome. Today the Rett Syndrome Research Trust announced they were funding two additional clinical trials, bringing the total to about six.  Six is a massive number in comparison to zero.  It’s an impressive accomplishment for all of the scientists and families who have…

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An Actual Conversation With Maggie

We got the Eye Gaze Computer!!!  After a very hard fought battle with the district, they gave us the communication device Maggie needed.  They wanted to help the whole time, there were just a lot of hoops we had to go through.  But in the end, we got it.  I spent the better part of…

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When Laughter Fills The Room

It’s amazing how much about Rett Syndrome I can forget when Maggie’s in a giggly mood.  Her laugh is literal music to my ears and it washes away all of the stress and pain of Rett Syndrome.  Knowing that she’s having a good time, she’s finding enjoyment in things, and she’s experiencing little kid giggles…

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