GrandMary and I are getting a little punchy here. At times we feel like we're running a skilled nursing center: dispensing multiple meds up to three times per day, changing bandages, fitting in exercise, bathing, and healthy meals. Yesterday, we had Oscar sitting on the shower bench washing his underarms—left, right, left, right. I lost count, … Continue reading that healing feeling
Oscar finally got to check something big off his Summer List yesterday, post-surgery mini-golfing. He'd been eager to go ever since he'd gotten out of the hospital, begging us last Saturday, a mere two days post release. Dr. C, probably incredulous that we were considering it, said, "Maybe in a week." Paul and I were … Continue reading Mini-Golfing
I got to the hospital early yesterday—my eyes had popped open at 5:14am, my brain and heart already racing with all the unknowns. Did Oscar have Central Adrenal Insufficiency? What if he did need surgery to resolve the pneumothorax*? Paul and Oscar were already awake when I arrived—the schedule of meds and x-rays prohibits more than … Continue reading day 7 adventures
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
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
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?
Lack of sleep and the uncertainty of the hospital schedule is really throwing Oscar for a loop. His free flowing tears and argumentative tone had most people assuming he was in serious pain, but the real challenge was the sleep deprivation combined with uncertainty around medications, the constant flow of doctors and nurses, and a … Continue reading Ups and Downs
Our week was filled with the tests and medical appointments required for surgery. A visit to the pediatrician for an EKG and medical clearance. An appointment over the hill for a pulmonary exam and spirometer (lung capacity) test. A trip to the local hospital for a series of xrays (just one month after the last … Continue reading Pre-Op Appointments
this boy 