Right now the Centers for Medicare and Medicaid Services is drafting guidelines for their Coverage with Evidence Development in the use of the new Alzheimer’s drug, aducanumab, excluding people with Down syndrome and other intellectual and developmental disabilities (I/DD). A quick comment from you could change the course of Hope’s life! Please help.
Hope was admitted to the hospital four years ago today, yet this is the first time we’ve had to acknowledge the anniversary, thanks to common years safeguarding the memory since 2016. I’ve long promised the story of her 105-degree fever, so here we go.
Since Hope was a newborn, I have found myself in tears several times over the thought of someone kidnapping her and how helpless she would be. This is of course extreme—a sensational story pieced together from movie plots and anxiety—and there are more realistic events that could lead to Hope becoming lost.
In a few days, we send Hope for ear tubes and an adenotonsillectomy. But unlike her heart surgery, this is technically elective.
I’ve never felt like anyone else we know when it comes to Hope’s teeth. Hope was a year old when her first tooth broke through, and it took over 2 months to come all the way down; the pediatrician said to expect 2 to 4 weeks.
During Hope’s hospital stay, the days and nights all blended together. The sun kept our internal clocks on track, but our days didn’t start until the medical team made its […]
Hope underwent her sleep study this past August, referred by her developmental pediatrician following recommendations by the American Academy of Pediatrics to screen for obstructive sleep apnea (OSA) in children […]
Eight days passed between Hope’s operation and her hospital discharge, which may not seem like a long time, but the days passed slowly and painfully. When Hope emerged from surgery, […]
When I was 16 weeks pregnant, we learned two frightening things: In the short term, our infant daughter would undergo open heart surgery, and in the long term, statistics showed […]
At Her Own Pace 