It’s been far too long since our last get-together and I hope everyone is doing well! Life has been a whirlwind for us, with Carter juggling two ice hockey teams and a roller hockey team, swim lessons for both boys, and our usual chaos that comes with daily life. Now we have added PSR andContinue reading “Catching Up and Reflecting on Life”
Tag Archives: fragilexcarrier
Chicago Trip, Sentence Strips, Oh My!
I just looked at the last time I blogged and holy cow…things have been a little busy here! So, let’s get to it! From The end of July until September I was busy working on our Annual Fragile X Walk. Every year we hold a walk at a local park here in St. Louis toContinue reading “Chicago Trip, Sentence Strips, Oh My!”
Our Fragile Xperience Updates
If you were to sum up the month of July the only word I can think of is AMAZING! July is Fragile X Awareness month and we have been so busy spreading awareness, sharing Fragile X facts daily and advocating fiercely. Jackson started his Summer program at his new school and while we were absolutelyContinue reading “Our Fragile Xperience Updates”
Advocacy Day!
Today, Dan and I took a day off from work. It wasn’t to enjoy the nice weather, but seriously, we are having some amazing weather right now. It was for something much more important than that. Today, we and a group of our peers advocated for Fragile X Syndrome Funding for Research and Programs withContinue reading “Advocacy Day!”
Fragile X Awareness Day 2020
Today is Fragile X Awareness Day. Across North America, more than 60 landmarks are lighting up teal as part of the #TealTakeover to show their support for Fragile X individuals and families and all the doctors, researchers and organizations that support these individuals and families. 5 years ago, I was pregnant with our oldest, Carter.Continue reading “Fragile X Awareness Day 2020”
Genetic Testing
We recently had our monthly meeting with our Parents as Teachers provider and during our session I mentioned something that has been on my mind for months…”I feel like a pioneer in regards to children with Fragile X Syndrome and partial methylation.” Fragile X Syndrome is the leading known genetic cause of autism and intellectualContinue reading “Genetic Testing”
Autism Screening
In July 2019, we took Jackson to his Autism Screening. This appointment was slotted to last 3.5 hours. As a kiddo under 2 years old, having him cooperate for 3.5 hours seemed impossible, but he did incredible. The screening was all play based between him and his doctor. As a parent, it was the longestContinue reading “Autism Screening”
Learning I was a Fragile X Carrier
In June of 2015, we found out we were pregnant with our first child. This was a time of excitement and celebration! We had talked about wanting to start a family as soon as we got married, so our dreams were coming true quickly! Around our 12-14 week checkup, we were told they could performContinue reading “Learning I was a Fragile X Carrier”
Our Fragile Xperience 