Oscar was feeling better by this evening. While he is still having bouts of lightheadedness and gas pain, his color and chatter have returned, and he has stopped complaining that his head hurts. What a relief. Our best guess, but we don't really know, is that the gas, plus sensitivity to the narcotics we were … Continue reading Improving
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
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
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
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
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
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?
food, lifestyle, bay area living.
and the words in between...
Author
Tell Me This
