Quiet Weekend, But Uncomfortable Nights

Our weekend was very quiet and uneventful, just the way we like it. Surprisingly, Jojo chose to spend more time on the computer than watching SpongeBob Ultimate Bash on Nickelodeon. He has been staying up in his wheelchair for 6 to 8 hours a day except for "bathroom breaks." He is over the phase of getting up at 7AM to watch Special Agent Oso, but thankfully, he still goes to bed before 10PM. Lately, though, he's been whining while asleep and had to be repositioned in bed more often during the night. We're not sure if he's just not comfortable or if his nose is giving him problems. My poor baby, he always says "I'm always not comfortable." He says it's his hips. We thought that with his special mattress he'd be more comfortable. It must be the combination of him not having enough fat/padding or not enough hip joint stability because of muscle atrophy and the tendency of the joints to be subluxed/out of place that comes with SMA. We'll see how he sleeps tonight.

Typical Friday

It's Friday, so I'm home with Jojo and Brady is at work. There's no babysitter today, but it's okay because Jojo is keeping himself busy driving his wheelchair around and playing games on the computer.

Jojo's speech is not easy to understand at times because of increasing weakness of the muscles on the lower part of his face. He gets very frustrated and starts to cry when we don't understand what he's saying. I can relate to that; coming from a foreign country and still retaining my "accent," I feel insulted sometimes when people say "what?" when I talk ;-)