They wheeled Oscar into surgery about an hour and a half ago. I didn't tear up this time, and he didn't say, "Don't worry Mom, I'll be okay" like last time either. Instead, he was anxious up until the last second, worried about the post-surgery constipation that was so debilitating last time—apparently the "happy juice" … Continue reading Surgery Day
PWS
Drastically Distracted
We're T-36 hours to surgery and Oscar's anxiety is mounting. "How long will the surgery take," he asked three times today. "I don't want it to take too long." And I heard I'm not looking forward to Wednesday about seven times. I've been playing up how great the hospital is and how I've heard that there are … Continue reading Drastically Distracted
Here We Go Again
We found out last month that Oscar will need spine surgery again, and soon. I knew even before we stepped into our local orthopedist's office that morning in June. His trunk had started shifting farther to the right and his shoulder blade was becoming even more prominent. His curve used to be somewhat hidden by … Continue reading Here We Go Again
Who Cares?
I'm struggling with this in my writing right now - who cares about one family's navigation of the PWS landscape with everything that's going on in our country right now. I certainly don't. Oscar could be having an hour-long meltdown in his bedroom over the loss of screentime for lying. (He says he didn't. I know … Continue reading Who Cares?
this boy 