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

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?