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: fragilexawareness
Fragile X and Seizures
Hi All!! It has been too long and I truly apologize! Things have just been so crazy with life, work, and the Fragile X Resource Center of Missouri. The last time we were together I was telling you about Jackson starting school and our trip to visit EBK at Rush University…man that seems like agesContinue reading “Fragile X and Seizures”
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”
Dentist Appointments
Tonight I am sitting here with Jackson soaking up all the happy moments he is having. Normally something sets him off for no apparent reason and head banging ensues, but tonight he has been in such a great mood from the time that I picked him up at school and I am loving every minuteContinue reading “Dentist Appointments”
Fragile X Spirit Week
Hi all! I hope everyone had a wonderful weekend! Our weekend was filled with sore arms from getting our first COVID Vaccine (YAY!), Ice Hockey and Baseball practice and mom and dad were lucky enough to have a date night thanks to Grandma and Grandpa! My last post was about our Advocacy Day with membersContinue reading “Fragile X Spirit Week”
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!”
Let’s Talk Behaviors
Hi all! I hope you are doing well and staying warm and healthy! We had snow this past weekend, so our oldest was super happy to be able to sled for the first time this winter. I was not so happy as I would rather be on a warm, tropical island, but hey, if heContinue reading “Let’s Talk Behaviors”
New Year, New Words!
Happy New Year, All!! I hope you and your families are safe and healthy as we start a new year. As we move into 2021, we have witnessed some great things with Jackson’s development! He is talking a ton!!! Jackson has been saying things like, “Da”, “Ma”, “Carter”, “Grandma”, “Grandpa”, “Pa”, “Va” and even saidContinue reading “New Year, New Words!”
Our Fragile Xperience 