Finding the right path for a teen with special needs
J.P. has recently decided to either be fussy at bedtime or to whine in the middle of the night. We still have a monitor in his room, so we get to hear it all.
It was beginning to look like we may be spending Thanksgiving and Christmas in the hospital in 2018. Unexplained pain and recurrent vomiting had sent us to the hospital in October and again in early November. We were discharged after a five-day stay and returned to the emergency room that night.
J.P. began vomiting in October, and we weren’t sure if it was because of cluster headaches, gastrointestinal issues or a shunt malfunction. I’m not talking about the kind of vomiting when you feel better after it happens. This was vomiting that wouldn’t cease, and eventually led to respiratory distress and a 911 call.
When J.P. turned 13 years old, it was a milestone and reason to celebrate. While J.P. was considered by most to be a miracle baby, his medical challenges had the doctors warning us that he would likely never become a teenager.
It was British Prime Minister Benjamin Disraeli who first said that change is inevitable, and I’ve seen plenty of it over the past three years. When I last posted to this blog, I was leaving my life in TV news to reinvent myself as… Continue Reading “World of change”
It’s been one month since J.P. arrived at Florida Hospital for Children by ambulance. It was the week before Thanksgiving, and we prayed we would make it home in time to celebrate Turkey Day with our family. I can’t believe we’re now wondering if… Continue Reading “J.P.’s hospital stay: 1 month later”
From a very young age, I always knew what I wanted to do when I grew up. I was fascinated with television and spent my childhood dreaming about working at the TV station. Saying “the TV station” above is not a mistake, because there… Continue Reading “Following my heart”
As the parent of a child with special needs, I’ve learned a great deal about how hospitals work, what gets a care team concerned and the things to monitor closely during a hospital admission. But each hospital admission comes with unique circumstances and situations… Continue Reading “Hospital lessons learned”
It was more than a 13th birthday party at J.P.’s house over the weekend. I’m not saying that the very fact that J.P. turned 13 wasn’t reason enough to celebrate, but this party felt different than some others. We began the week at Florida… Continue Reading “Celebrating major milestones”
Anyone who knows me will tell you I’m passionate about two things in life: My family and the care my son receives at Florida Hospital for Children in Orlando. We spend a great deal of time at the hospital — both inpatient and outpatient… Continue Reading “Pushing for family-centered hospital care”
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Create A Better Version Of Yourself
Because we’re all recovering from something.
Irreverent Musings With A Message