Category Archives: kyphosis

A Day with Acadia- Part 1: Awareness

Posted on October 30, 2019 by melelllan

This is my last post of Rett syndrome Awareness month. I had hoped to do more, but Rett syndrome made sure a good amount of awareness was happening right at home, but this was going to be the last either … Continue reading →

Posted in Acadia, Anavex, Anavex 2-73, Communication, Dame Margaret Brimble, fund-raising for rett syndrome, gp2c, hope, ketamine, kyphosis, Neuren, Neuren Pharmaceuticals, Newron, NNZ-2566, NNZ-2566 trial, Remarkable Rett-a podcast series, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, RSRT, sarizotan, service dog, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | Leave a comment

One Girl with Two Backs of Steel

Posted on August 16, 2018 by melelllan

    On July 31, I did the one thing I’ve feared for 10 years. I let my child go into surgery for kyphosis. It’s hard to describe those 10 years of thoughts-the being told surgery was inevitable, being told … Continue reading →

Posted in bone deformity in Rett syndrome, kyphosis, Pain in Rett syndrome, Radiology in Rett syndrome, Rett syndrome Awareness, scoliosis, skeleton, Trail to a Texas Trial, Trofinetide | Tagged , , , , | Leave a comment

Taking a Break

Posted on June 28, 2018 by melelllan

I would not normally post anything political on this blog, however I am taking a break from this blog for a bit. The current political crisis in my country is demanding my attention. In many ways, Katie’s journey will be … Continue reading →

Posted in baseball, bone deformity in Rett syndrome, kyphosis, Neuren Pharmaceuticals, Rett Syndrome, Rett syndrome Awareness, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | Tagged , , , | 2 Comments

The Inner Workings of a Star

Posted on March 20, 2018 by melelllan

I have known Katelin from long before she was born. Through ultrasound, I saw her when she was just a little bean and later, when she looked more like the little girl I would soon hold in my arms, I … Continue reading →

Posted in Big Bang, Dr. Robert Chesanow, kyphosis, Radiology in Rett syndrome, Uncategorized | Tagged , , , , , , , , , , | Leave a comment

A Backbone of Steel

Posted on March 16, 2018 by melelllan

For 24 years I have taken care of Katelin. I know every mark on her body. I know when a new freckle pops up. I know why she has scars on the tops of her feet, because in severe anxious … Continue reading →

Posted in animals, bone deformity in Rett syndrome, kyphosis, Rett Syndrome, Rett syndrome Awareness, rettland.org, service dog, skeleton, Trail to a Texas Trial, Uncategorized | Tagged , , , , | 1 Comment

Body Bound by a Brain #4

Posted on October 24, 2017 by melelllan

A roller coaster twists and turns and bends. It can take your breath away. So does Rett syndrome, in a whole other, non-exhilarating, way. Rett syndrome twists and turns and bends our children’s bodies, often taking their breath away.   … Continue reading →

Posted in bone deformity in Rett syndrome, kyphosis, Rett Research, Rett Syndrome, Rett syndrome Awareness, scoliosis, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 1 Comment