Author Archives: melelllan

Taking a Break

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

Right to Try-Walking the Tightrope

Yesterday, the president, signed the Right to Try Bill into law. But, what does that really mean for the majority of patients suffering from TERMINAL illness? I’ll try to break it down as best as possible from what I know … Continue reading

Posted in Anavex, cure, FDA, fund-raising for rett syndrome, hope, Rett Research, Right to Try Law, Trofinetide, Trofinetide Phase III, white house | Tagged , , , , | 3 Comments

Pain is in the Eye of the Believer

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

Faith in humanity

This gallery contains 4 photos.

Originally posted on blueberriesandgiggles:
This morning Lily, Urzsula (one of her beloved caregivers) and I met our cousins the Darlings at the Children’s Museum. We had a blast, especially at the dance party! Everyone at the museum was super accommodating…

Gallery | Leave a comment

Concussions are a Big Pain!

I’m going a little off topic, but this is becoming a pet peeve of mine. I think I’ve done a pretty good job of letting the Rett community know Trofinetide is a real hope- the way it works, why it … Continue reading

Posted in concussion, Intrepid 2566, Neuren Pharmaceuticals, NFL, TBI, Trail to a Texas Trial | Tagged , , , , , , , , , , | Leave a comment

The Inner Workings of a Star

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

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,, service dog, skeleton, Trail to a Texas Trial, Uncategorized | Tagged , , , , | 1 Comment