Facebook has that great “on this day” thing where it reminds you of things you posted on that day in previous years. Sometimes I laugh, sometimes I think “wow I used to be such an a-hole”. About this time 7 years ago, Grace was going through her sudden Rett regression and we were in the...
People often ask when Grace “came down with” Rett. It’s not really like that…Rett is always there. I say it’s like Grace had this genetically programmed glass ceiling that would only allow her to get to a certain age before Rett pushed her back. I don’t know how scientifically accurate that is, but there ya...
When Grace was first diagnosed, this term “eye pointing” kept coming up and it didn’t make much sense to me. When Grace was still a baby and young “toddler” (who never toddled) she was addicted to her bottle and one of the ways we displayed her ability to understand us and interact with the world...
(Just when you think you’ve seen it all) There’s always something new around the corner when you have a non-ambulant kid. But first a little story to get us going: Once upon a time (the day before we went to Florida for Christmas), we noticed Grace’s left leg wouldn’t straighten without her shaking and getting...
I’m such a rubbish blogger! It’s been 4 months since I posted about Grace’s video telemetry EEG test. Naturally it took a couple months for doctors to read the results and come to some conclusions. We saw our Neurologist a few weeks ago who explained the results in plain English and here are...
In October at the European Rett Syndrome Conference, one presenter showed a very interesting study which tracked the eyes of typical children, children with rett and those with autism (ASD). The differences in what they were looking at on the same image were striking. The autistic children looked at the corners of the image and...
This is Charlie —> I took this photo at one of the Cure Rett Picture the Hope Awareness Tour photo shoot days. And then just a day or two later, she fractured her femur at school. She wasn’t doing anything spectacularly taxing – just hanging out in the sensory room. She was simply moved and...
