Tag Archives: autism

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

Trofinetide #2

So, here we go- Why was Rett syndrome chosen for Trofinetide trials. Contrary to what most people think, Trofinetide was not developed for Rett syndrome. A quick google search reveals that it was first developed for stroke, but the focus … Continue reading

Posted in boys with Rett syndrome, cure, Fragile X, hope, Intrepid 2566, Neuren Pharmaceuticals, NNZ-2566, Rett syndrome Awareness, TBI, Trail to a Texas Trial | Tagged , , , , , , | Leave a comment

Raise Rett Syndrome Awareness

I’ve had my mind on other things, so somehow this escaped me, but today there is an organized push to raise Rett syndrome awareness, through #rettsyndromeawareness While we do devote the entire month of October to Rett Syndrome Awareness, it … Continue reading

Posted in boys with Rett syndrome, chan zuckerberg initiative, Communication, cure, Education, Fragile X, fund-raising for rett syndrome, Intrepid 2566, Neuren Pharmaceuticals, Newron, Rett Research, rettsyndrome.org, sarizotan, TBI, Trail to a Texas Trial, Trofinetide Pediatric trial | Tagged , , , , , , , , , , , , | Leave a comment

Conference Post 4-Behavioral Issues…What? Why? and What’s being done.

Dr. Kaufmann’s presentation,”Behavior Issues and Management,” was  a must go to for me. In my previous post, I concentrated on how behavioral issues affect the caregivers and family. Now, I’d like to talk about the key points he made in … Continue reading

Posted in anxiety in Rett syndrome, Communication, Dr. Walter Kaufmann, Education, Rett syndrome conference 2016, Talking, Trail to a Texas Trial | Tagged , , , , , , | 2 Comments

Animal Apps-Part II

Well, the excitement of a blizzard with hurricane winds is keeping us occupied today, but definitely no going out, can’t see much of my car anyway, lol and a long time to go. Katie’s favorite animal app is SoundTouch. It … Continue reading

Posted in animals, Apps, Communication, Education, Rett Syndrome | Tagged , , , , , , | Leave a comment

Soon, Just a Phone Call Away

How simple a thing a phone call seems. Katie’s sister sends her videos on the phone for her to watch, and Katelin listens when her sister calls, but not once have they had a conversation, except when Katie was one … Continue reading

Posted in Communication, Neuren, nnz 2566, Phone, Rett Syndrome, Talking, Trail to a Texas Trial | Tagged , , , , , , | Leave a comment

It’s a Wonderful Life

No, I’m not talking about the movie! 🙂 As I reflect upon this last year, it’s been almost one full year since we returned from Texas, I wonder, “how can it be a whole year already?!” It still seems like … Continue reading

Posted in Neuren, nnz 2566, Rett Syndrome, Trail to a Texas Trial | Tagged , , , , , , , | 7 Comments

Day 7

I’m tired as I write this and it’s only 6:50 at night. So much of importance happened today. First, it appears Katelin has regained her appetite, and along with it some behavior surrounding hunger. I am disappointed with this as … Continue reading

Posted in Rett Syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 2 Comments

Symptoms of Rett Syndrome, Katie style.

Here’s a list of SOME of the symptoms of Rett Syndrome, taken from the Mayo Clinic Website Slowed growth. Brain growth slows after birth. Smaller than normal head size is usually the first sign that a child has Rett syndrome. … Continue reading

Posted in Rett Syndrome | Tagged , , , , , , , , , , , , , | 1 Comment