Monthly Archives: May 2019

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

Rett Syndrome is Such a Trial… #2 Ketamine

Many parents can attest to the fact that after a procedure requiring anesthesia our children have a decrease in Rett related symptoms. For Katelin, this was a drastic decrease in behavioral issues. My other children would often say… Can we … Continue reading

Posted in Breathing issues in Rett syndrome, FDA, ketamine, Rett Research, Rett Syndrome, Rettland Foundation,, RSRT, Trail to a Texas Trial, Uncategorized | Tagged , , , , , , , , , | 2 Comments

Lavender and Lilac

Allow me to introduce you to the code names of the Trofinetide Phase III! Makes me think of the time I was in the VP’s motorcade and we all had code names, lol. First up we have Lavender- a 12 … Continue reading

Posted in Acadia, cure, Neuren Pharmaceuticals, Rett Research, Rett Syndrome, Trail to a Texas Trial, Trofinetide, Trofinetide Phase III | Tagged , , , , , | 1 Comment