Calvin, 22q Deletion · Henry, Dup15q

Rare Disease Day: Get to Know 22q and Dup15q

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

Calvin, 22q Deletion · Henry, Dup15q

Getting Ready for Rare Disease Day

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

Sensory Play · Tot Play

Guess That Scent! Sensory Play

Smells like snack time! Yes, we’re still talking about our 5 senses around here, and now we’re exploring our sense of smell. I put together this little smelling guessing game for the boys using some of their favorite foods and some paper cups. Super simple! (Just the way I like our tot school activities!!) I… Continue reading Guess That Scent! Sensory Play

Calvin, 22q Deletion · Family Life

A Big Brother with 22q

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

Henry, Dup15q

Henry’s Dup15q Diagnosis: 3 Things I Wish I Could Have Told Myself

I have a vivid memory of driving to the hospital to have additional blood tests done on my tiny baby,Β Henry, and thinking to myself,Β I wish I could reset and start over. I was thinking of how I used to reset my Super Mario Brothers gameboy game and start all over from the beginning if things… Continue reading Henry’s Dup15q Diagnosis: 3 Things I Wish I Could Have Told Myself

Activity Roundup · Holiday Activities · Tot Play

6 Ways to Play with Conversation Hearts

Valentine’s Day is just around the corner! We got our cards mailed out to C & H’s grandparents yesterday. Hope they arrive in time!! This year I was being really stingy about spending money on Valentines toys or craft supplies. So I bought two bags of conversation hearts for $1 each, and I set out… Continue reading 6 Ways to Play with Conversation Hearts

Sensory Play · Tot Play

Textured Finger Paint

I had to really give myself a pep-talk before doing this activity with my kids because I was having a sensory aversion moment imagining the mess that could ensue from this brilliant, crazy idea! As I was brainstorming tactile sensory play, trying to think of new ways I could get the boys exploring different textures,… Continue reading Textured Finger Paint