CORRECTIONS :: in the video I said there is no calcium and actually each bottle has 75% daily recommended calcium. UPDATES :: This thickened up too much in the fridge so the next morning, the pump wouldn’t handle it. We left it to get to room temp and tried again hours later and still too...
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...
Little footage from a photo shoot when I tried to do Grace’s portrait. She was only 2 but couldn’t hold herself up without help so I decided to photograph her the way I did when I was doing newborns. Half of this is Rett and the other half is her just being a sleepy diva. The...
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...
It seems that people must be Googling about how to photograph girls with Rett Syndrome, so here’s my answer to a recent email inquiry on the topic. So many families with disabled children avoid the photographer because it can be a really disheartening experience. I once had a newspaper photographer come to photograph Grace and...
