Note: there’s video in this post. If you can’t see it, click here. The biggest thing that separates humans from other beings is our ability to read, write and communicate. If we don’t give girls with Rett the tools to do this, we’re willfully taking away their humanity. I learned that from Susan Norwell, one...
If you do just one important thing today, watch this video. The idea that just because you can’t speak, you don’t understand is such a travesty in the world of girls and women with Rett Syndrome. They are underestimated. Some are treated like babies for the whole of their lives. This is a very old...
Grace tested a Tobii eye tracking computer today which was so amazing. I was emotional before she even began. The computer precisely tracks each eye independently. The cursor moves with the eyes and when Grace dwelled on the item she was looking at for a certain number of seconds, it acted as a click on...
Two days ago, Grace got her DM Orthotics lycra bodysuit delivered. She needs to wear it under her clothes 12 hours a day, every day. It’s extremely specialised with support panels and zippers and holes in all the right places. The purpose of the suit is to give her muscles the extra support they need...
Just got home from the hospital. Grace got her PEG this week and I thought if I didn’t blog about it, like, right NOW then I knew I probably would never get around to it. There were so many feelings to get over leading up to this point. It’s like you know how there’s those...
Grace and I spent yesterday and today at Southampton General Hospital having a couple of tests done to prepare for her g-tube surgery next month. So for 5 days leading up to her appointment, she was off all of her meds. We expected a hellish few days and….nothing. No crying, no pain…nothing. She had a...
