Category Archives: Communication

One Moment in Time…

To be honest, I had to wait over a day to try and write this post. And still, I start crying; I ramble; I’ve looked at what I’ve written and while to a special needs’ parent it may look coherent, … Continue reading

Posted in America's Got Talent, boys with Rett syndrome, Communication, hope, Kodi Lee, Music, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Special needs siblings, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , , , , , | 3 Comments

Hold the Presses-Trofinetide in the News!

The first publication of the Pediatric Trofinetide trial has hit the proverbial newsstand! Neurology.org has published “Double-blind, randomized, placebo-controlled study of troļ¬netide in pediatric Rett syndrome” ahead of print. So, it’s hotter than “hot off the press.” So, quick cut … Continue reading

Posted in Acadia, anxiety in Rett syndrome, Ataxia, Breathing issues in Rett syndrome, Communication, cure, Dr. Walter Kaufmann, hand clasping in Rett syndrome, Intrepid 2566, margaret brimble, Neuren Pharmaceuticals, Neurology.org, NNZ-2566, Orpan Drug Status, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, screaming in rett syndrome, seizures in Rett syndrome, Texas Children's Hospital, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , | Leave a comment

To the Doctor that Pissed Me Off

I read this article today titled, To the Nurse Who Made Me Cry and it asks at the end, “Fellow Mighty friends, if you could write a letter to a medical professional, what would you say?” Now, I’ve actually often … Continue reading

Posted in acceptance, Communication, Education, grief, hand clasping in Rett syndrome, hope, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, Trail to a Texas Trial, Uncategorized | Leave a comment

Up To The Mountain-again.

I struggled to come up with a title for this post and I struggled in deciding whether to write it or not. But, I challenged myself to be honest with both myself and others when I began this blog and … Continue reading

Posted in Acadia, anxiety in Rett syndrome, Communication, cure, Neuren Pharmaceuticals, Phone, Rett Research, Rett Syndrome, rettland.org, rettsyndrome.org, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | 6 Comments

All is Not Quiet on the Trofinetide Front #1 A Chess Game

It’s been very quiet in the public eye in regard to Trofinetide. We all are in a holding pattern as we wait for Phase III to begin, but BEHIND the scenes things are progressing strategically and clearly, like a chess … Continue reading

Posted in Acadia, anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, breakthrough therapy, Communication, cure, FDA, Fragile X, hope, margaret brimble, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettland.org, rettsyndrome.org, Trail to a Texas Trial, Trofinetide, Trofinetide Pediatric trial, Trofinetide Phase III, Trofinitide, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , | Leave a comment

When the Parent is a Punching Bag

All children act out towards parents, at some time in life, each of your children will most likely say they are unhappy with you. It’s cute when they’re four or five and they call you a “big stupid poop head.” … Continue reading

Posted in Acadia, anxiety in Rett syndrome, Communication, cure, Neuren Pharmaceuticals, Pain in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, Talking, Trail to a Texas Trial, Trofinetide, Uncategorized | Tagged , , , , , , , | 2 Comments

Rett syndrome Awareness #14: Suffering in Silence

Yesterday, my awareness was personal, Katie was not feeling well and wanted to “go bed” in the middle of the day. Crying and crying “go bed” “moooommmyyy, go bed” so that’s what we did, we snuggled on the couch until … Continue reading

Posted in anxiety in Rett syndrome, Communication, cure, Neuren Pharmaceuticals, Pain in Rett syndrome, Rett Research, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, Trail to a Texas Trial, Trofinetide, Uncategorized | Leave a comment