Category Archives: Talking

A Chat with Dr. Pichard of IRSF

Posted on December 20, 2021 by melelllan

Disclaimer: Unless specifically stated, the possible benefits down the line are my opinion alone. As one might imagine, I and other parents have a ton of questions since the results of the Trofinetide Phase III came out. One of the … Continue reading →

Posted in Acadia, anxiety in Rett syndrome, Breathing issues in Rett syndrome, clinicaltrials.gov, Communication, Daffodil trial, Dame Margaret Brimble, Dr. Helen Leonard, LAVENDER TRIAL, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, rettsyndrome.org, screaming in rett syndrome, Talking, Trofinetide Phase III | Tagged , | Leave a comment

Rett syndrome Awareness Month #2 Sucker Punches

Posted on October 2, 2021 by melelllan

Rettsyndrome.org has a glossary of words and definitions! I must admit that I only recently learned this, so kudos to whomever put this all together. When Katelin was first tentatively diagnosed with Rett syndrome at the age of 18 months … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, Breathing issues in Rett syndrome, Communication, Education, grief, hand clasping in Rett syndrome, homeschooling, Human body, Pain in Rett syndrome, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , , , , | Leave a comment

A Rose by Any Other Name…is Still Rett Syndrome

Posted on April 9, 2021 by melelllan

This is something I’ve wanted to get off my chest for sometime, years actually. It’s bothered me at times, hurt me at times, frustrated me often and made me hurt for others so many times I can’t count. It’s the … Continue reading →

Posted in anxiety in Rett syndrome, Ataxia, boys with Rett syndrome, Breathing issues in Rett syndrome, Communication, Rett Syndrome, Rett syndrome Awareness, screaming in rett syndrome, seizures in Rett syndrome, Talking, Trail to a Texas Trial | 5 Comments

A Sucker Punch

Posted on October 14, 2020 by melelllan

This is a hard post to write. I got sucker punched yesterday. Without warning, I had to answer one of “those” questionnaires. You know, the ones which go… Can your child do this- (2) for always or often (1) for … Continue reading →

Posted in Acadia, Ataxia, Communication, grief, Neuren Pharmaceuticals, Rett syndrome Awareness, Talking, Trail to a Texas Trial, Trofinetide | 1 Comment

Thoughts on a Lonely October Night

Posted on October 7, 2020 by melelllan

When people ask us parents… what would you like the rest of us to know about your child?… our go to answer is usually… just because she can’t talk doesn’t mean she can’t hear you, understand you or learn. The … Continue reading →

Posted in acceptance, boys with Rett syndrome, Communication, grief, Rett syndrome Awareness, Talking, Trail to a Texas Trial, Uncategorized | Tagged , , | Leave a comment

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

A Trip of a Lifetime

Posted on September 30, 2019 by melelllan

I recently took a trip with Katelin. A long, boring, exhausting trip- more than worth it for the end result, but the getting there and getting back were tough. Katelin threw up on the way back and that was the … Continue reading →

Posted in Acadia, Communication, cure, hope, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Rett syndrome Awareness, rettsyndrome.org, screaming in rett syndrome, Special needs siblings, Talking, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | 2 Comments

Up To The Mountain-again.

Posted on January 31, 2019 by melelllan

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

When the Parent is a Punching Bag

Posted on November 18, 2018 by melelllan

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

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