Oscar had a great night, sleeping a good chunk, but this morning he's lethargic and heavy-lidded, barely able to respond to simple questions. His belly is distended and he's sweaty and lightheaded. He's not that interested in liquids, even diluted apple juice, and we had to coax him to lick a grape popsicle. The abdominal … Continue reading Struggling
Author: Mary Claire Hill
Balancing Acts
The last 24 hours have been all about balancing pain management and GI symptoms. We're trying to use fewer narcotic pain meds to prevent all the gastric issues he experienced last time. But that means that instead of pain levels of 0, 1, or 2, he's been getting into the 4-7 range frequently, with 4 … Continue reading Balancing Acts
Relief
It was a long day of waiting in the hotel lobby. Joel, Drs. ABC's physician assistant, kept us updated throughout the morning with texts. At 11:30am we learned that the revision of the lumbar curve was finished and that they were closing Oscar up, which would take an hour or more, and then they would … Continue reading Relief
Surgery Day
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
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
The Summer List
Oscar was devastated when he learned he would need a 2nd surgery and that it would have to be this summer, before his curve progressed even more. We waited almost a week after conferring with his surgeons to tell him—long enough to digest the news ourselves, set a date, and start to put together a … Continue reading The Summer List
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?
Six Weeks
Six weeks already! Oscar and I arrived back in Berkeley a month ago Tuesday. While I'd (naively) thought we'd be able to continue at the slower pace we'd grown accustomed to in NJ while recuperating, Oscar and I were both thrust back into normal life...with carpooling, logistics, meetings and appointments. To start, Oscar (unbelievably) went … Continue reading Six Weeks
Back in Berkeley
We're home! A thankfully uneventful and pain-free six hour flight with relatively smooth transitions in the airports - I couldn't have asked for a better trip. We were greeted by bright sun, clear blue skies and early spring blooms...all making me feel like we were gone for two months, not two weeks. We drove directly … Continue reading Back in Berkeley
this boy 