Calvin turned 4!! And I’m calling this my 22q awareness post for this month 🙂 My oldest son, Calvin, was born with 22q11.21 Deletion Syndrome – meaning that he is missing a teeny tiny section of genes on his 22nd chromosome. 22q DS is not all that uncommon, and has gone by several different names… Continue reading CalBean Birthday!
The type of speech therapy that Calvin does is called articulation therapy. He needs help working on pronouncing sounds and words. His language and vocabulary seem to be pretty on track for his age. He talks in full sentences, he carries on conversations, he can go on and on about his favorite dinosaurs… the only… Continue reading Memory Game Articulation Practice
I love finding adults with 22q deletion who are out there giving us a glimpse into their lives by sharing their stories, and giving hope to moms like me raising young kids with 22q. Which is why I’m so excited to introduce Amanda Ripsam! Amanda is a writer, motivational speaker, and 22q advocate. On her blog, Mommies Quiet… Continue reading Meet Amanda! Blogger & Motivational Speaker with 22q Deletion
Today on Rare Disease Day, I invite you to learn more about 22q deletion syndrome and dup15q syndrome! Let’s start with 22q! 22q deletion syndrome is not all that rare! It is the second most common chromosomal syndrome after Down Syndrome. With Down Syndrome, there’s an extra copy of chromosome 21. With 22q deletion, chromosome… Continue reading Rare Disease Day: Get to Know 22q and Dup15q
Rare Disease Day is February 29th! That’s this coming Monday, you guys! Join me in raising awareness and support for individuals with rare diseases and disorders. So, what is Rare Disease Day and why do I care about it? From RareDiseaseDay.org Rare Disease Day takes place on the last day of February each year. The… Continue reading Getting Ready for Rare Disease Day
When we found out our first baby, Calvin, born with 22q deletion syndrome, was going to be a big brother – and much sooner than we expected! – I tried to imagine what the future would hold for him and his baby brother. With no reason to worry about a genetic anomaly affecting my second… Continue reading A Big Brother with 22q
It turns out I actually have a worse potty mouth now that I am a parent than I did pre-kids. Go figure. I was folding and putting away laundry a couple of weeks ago and Henry was napping and Calvin was hovering, buzzing around me like a little bee chattering silly things and jumping on… Continue reading Calvin’s First Curse Word
Surprisingly Special 