Happy Summer!! Oh wait – I totally skipped Spring on the blog! I admit it… I just don’t prioritize blogging during the school year. The other priorities just don’t leave enough space. But school’s out for summer vacay and now I’ve got a chance to look back and write about our Spring highlights 🙂 Calvin’s… Continue reading Spring Five
Craniofacial Clinic is one of Calvin’s annual check ups. He has been going to these clinics since he was just three months old, when he was first diagnosed with 22q11.21 Deletion Syndrome. We have attended CF clinics at Kaiser Oakland, Lucille Packard Children’s Hospital at Stanford, and now at Duke Children’s Hospital. Calvin attends these… Continue reading CF Clinic 2017
“I’m FIVE!” paired with a hand held up to show five little fingers is Calvin’s latest greeting to most people, even the people whom he has already told many times that he is now 5 since his birthday a month ago. (For the month leading up to his birthday, his standard greeting was “It’s almost my birthday!… Continue reading “I’m FIVE!”
Last week I took out our box of Christmas books from the attic and the boys and I started exploring them. With wide-eyed excitement, Calvin flipped through Dream Snow… Richard Scarry’s The Night Before the Night Before Christmas, The Friendly Beasts, and my personal favorite, Julie Vivas’ The Nativity. Each time we took a different book out… Continue reading Calvin’s 5th First Christmas
Last month, on May 22, we went to our very first 22q at the Zoo Awareness Day event! This event is organized by the International 22q11.2 Foundation and by hosts at local zoos worldwide to connect individuals with 22qDS and their families and to spread the word about 22q. Families participating in 22q at the Zoo… Continue reading 22q at the NC Zoo 2016
Today we are off to the 22q at the Zoo event at our local(ish) zoo. 22q at the Zoo happens every year on May 22 as a chance for 22q families around the world to get together with their 22q neighbors to socialize and raise awareness. Find us on Instagram to see what we’re up… Continue reading Spread the Word about 22q!
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
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
Surprisingly Special 