Category Archives: bone deformity in Rett syndrome

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

Pain is in the Eye of the Believer

Posted on May 6, 2018 by melelllan

As I’m writing this Katelin is into her third month with a cavity that needs a root canal. Perhaps, you are saying to yourself, “My God! How could this mother let her child’s teeth go so long without seeing a … Continue reading →

Posted in bone deformity in Rett syndrome, Communication, Neuren Pharmaceuticals, Pain in Rett syndrome, Rett Syndrome, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , , | 4 Comments

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