I’m a day late on my Dup15q awareness post for this month, but I’m excited to share with you a beautiful guest post from another Dup15q mama, JiYoung. On her blog, My Special Life, JiYoung shares her thoughts and experiences as a parent to her young son Lucas, born with Duplication 15q Syndrome – the… Continue reading The Hero’s Journey – Guest Post from JiYoung
We moved here in December and after the evaluation process with our new early intervention organization and new therapists and new insurance, blah, blah blah, Henry’s in-home therapies are finally starting this week. He has been in feeding therapy since about February, and Calvin’s process with the public school district went a little faster since… Continue reading Therapy Schedule in Full Swing
It’s the 15th! On the 15th of each month I try to do some kind of awareness post about Henry’s syndrome: Dup15q. It’s a rare genetic disorder characterized by an extra piece of the 15th chromosome. Here are some of my other Dup15q posts: Rare Disease Day: Get to Know 22q and Dup15q Henry’s Dup15q… Continue reading 15 Super Special Things About my Son with Dup15q Syndrome
I used to work in a school where “HMP” was code for “High Maintenance Parent.” It was not a compliment. (And no, nobody ever called a parent that to their face. That I know of.) I think of being “high-maintenance” as being impatient, inflexible, and demanding. I think of HMP’s as being people who get… Continue reading DMEs and HMPs
Somebody loved the train at the park yesterday! Henry was doing so well when we first got to the park. He watched Calvin ride the little kiddie boat ride. He was all right as we waited in the long line for the train (well, as long as Mama was holding him). And he was so happy… Continue reading Take the Hard Things with the Happy Things
I’ve shared about how my second son’s diagnosis of Dup15q syndrome was difficult for me, and the things I wish I’d known in those early days of coping with such surprising news about my baby boy. One of the things that was, and still is, difficult about being a parent of a kid with a rare… Continue reading How Instagram Helped Me Embrace My Son’s Diagnosis
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
I have a vivid memory of driving to the hospital to have additional blood tests done on my tiny baby, Henry, and thinking to myself, 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
The deal with what I call “sensory play” is that it’s intended to be particularly stimulating to the senses in some way. Sensory play has been found to help with kids’ brain development, motor skills, spatial intelligence, and even picky eating. Here’s a PBS article about sensory play and here’s an article about sensory processing and… Continue reading “Sensory Play” with Henry
Surprisingly Special 