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
Author: Mary Claire Hill
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
Heading Home Tomorrow
Oscar is already two weeks post-surgery, and we're heading back to California tomorrow! I'm packing our suitcases and thinking about what we'll need on the airplane and how I will carry it all. Oscar won't be able to lift anything more than five pounds for at least another month, and yes he does want those … Continue reading Heading Home Tomorrow
Getting Back On Track
We feel like Oscar turned a corner in the last 24 hours! He had been experiencing increasing abdominal pain Wednesday afternoon and evening so, at Dr. C's suggestion, we tried a more aggressive intervention to get him some relief. Oscar wasn't happy but he felt much better afterward. And today's X-rays confirmed that he does … Continue reading Getting Back On Track
Setback
Why does there always have to be a setback? We were moving along smoothly here -- getting Oscar closer to a normal diet, watching him walk his loops around the house with increasing speed, venturing out of the house for longer walks. Sleeping through the night! And I think that right shoulder was starting to … Continue reading Setback
One Week Post-Op
So much progress in the couple of days since we left the hospital! Rather than lying on the couch or sitting in a chair propped up by pillows, Oscar's moving around a lot more. He walks loops around Grandmary's house before and after each meal, and whenever else we can convince him. Last night he, … Continue reading One Week Post-Op
