“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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Diagnosis Anniversary

The anniversary of Maggie’s diagnosis was three weeks ago.  I had been reading about other families and how that day is indelibly marked in their minds.  Going through the day I didn’t think of it in the same way, in that I wasn’t sad, or reminiscent of what could have been.  It was just another day…

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Happy New Year

We spent the last week in Texas with Maggie where she, once again, was showered with love and affection from her cousins and Texas family.  Always nice to be in such a welcoming environment. We were scheduled to be in Aruba for New Year’s, basking in the love and affection of perfect weather and beautiful…

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Happy Holidays

In honor of the holidays, I thought I would share Maggie’s holiday program from school.  I blurred out the other kids, because people get weird about that. This was a real treat for all of us.  We didn’t even know there was going to be a holiday program – just one other thing that parents…

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