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
Author: Mary Claire Hill
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
“Home”
We got the news around 10am yesterday morning -- The radiologist confirmed that Oscar's GI system was sluggish but not in crisis (always a concern in PWS) and Dr. C agreed that we could go home! While the paperwork was completed we distracted ourselves with a makeshift "book club". We're reading Game Seven by Paul … Continue reading “Home”
Going Crazy
We're all going a little bit crazy here in room 550 of Mount Sinai's Kravis Children's Hospital. The heater is knocking (really, I think there's a little man in there with a hammer banging on the pipes), the alarms are beeping (every time a medication finishes the dang pump beeps till the nurse turns it … Continue reading Going Crazy
Ups and Downs
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
A Day of Progress!
Oscar started the day heavy-lidded and drowsy from the medicines. He was slurring his words yet still insisting he wasn't tired by repeating, "I'm awake" anytime we commented on his sleepy state. Around lunchtime they lowered one of his medications to lessen the sedation and the difference was amazing. He opened his eyes, initiated lots … Continue reading A Day of Progress!
Out of Surgery and Resting
All went beautifully in surgery! Our trio of doctors kept us updated on Oscar throughout and sent pictures of his corrected spine once finished. They were quite pleased and optimistic --Oscar's curve was surprisingly "flexible" which allowed them to correct his rotation as well as his curve. As we expected, they purposely left him with … Continue reading Out of Surgery and Resting
In Surgery
Oscar's last words as he wheeled off into surgery at 8am this morning were Go A's! (And then he added "I'll be ok Mom!") The anesthesia had started to kick in - his eyes were wide and woozy and we were feeding him fun phrases to repeat, but the little message to me was all … Continue reading In Surgery
this boy 