Saturday: A Glimpse of a Well-day

Jojo missed Special Agent Oso this morning because we didn't wake up until 7:30. He stayed on the bipap until 9:00. Then I brushed his teeth, did the cough assist. By 10:00 Jojo was up in the wheelchair and had his first bolus feed. He watched TV and played on his computer while I tidied up the kitchen. Jojo has been mesmerized with his palms lately. He'd ask me to open his hands all the way so he could compare which palmar creases were more red. Because he keeps his hands loosely in a fist, his palmar creases are well-defined, red and sometimes itchy due to sweat. So I decided to put some powder on his board and let him rub his hands on it. That kept him busy while I made a few paper boats. At 1:00 he had his second bolus feed, then we went outside. I set him up with a table so he could play with water.

Then he asked to lie down in the back of the van. I read him some stories while he tasted a lollipop. At 3:30 we went back to the house so I could prepare his formula. He had his third bolus feed at 4:00. Then he had to taste some food: prunes (baby food), caramel on apple slices. At 5:30 we went back outside again to recycle the water he played with by watering his Dad's tomato plants; but, he had to play first. We went back in the house at 6:30 to wait for his show on Nick - Timmy Turner. He had a sponge bath at 8:00 per his request so he didn't have to miss his show. His Daddy came home about 8:30 and finished getting him ready for bed: brushed his teeth, coughed him, put the bipap on. At 9:15, Jojo was asleep. That, in a nutshell, is a fairly typical schedule for Jojo, on a well-day. When he is sick, respiratory treatments pretty much trump play time.

Taking care of a child with SMA is a full-time job and more. Every minute of the day is spent with the child, either actively through hands-on play time, medical care (use of equipment, feeding, changing diapers, etc,) or passively as in, part of you always listens for any sign of distress or beeping of the pulse ox when you are not in the same room as him. Even at night, you are trained to listen subconsciously to the smallest whimper from him, signalling a need to turn him to the other side or suction him.

It is not an easy life, but it's a meaningful one.