Just how important a chair can be

Sitting on the couch with Jorie

On the couch, Ryan age 4

Learning to drive (18 months old)

Over the weekend, Ryan's power chair just stopped working. And I mean it STOPPED working. It would not do anything. When we say Ryan's chair broke down, to most people, they think this just means Ryan cannot get from point A to point B until it's fixed. Sadly, this is not so. When Ryan was little, it could be said that his chair's main purpose was to get him around. He didn't need much else other than the support it provided (holding his weak body upright) and to get him around the house or the mall etc.. so we weren't having to carry him or push him in a stroller. When he was smaller, we could just set him on the couch if his chair broke down. Nowadays, things are just a bit different. Sadly, it wasn't until his chair broke down on Saturday that even I realized just how weak my son had become in just one year. Ryan's disease is degenerative. So he will always continue to get weaker. As sad as that is.....it is just part of life with SMA. We got his current chair in December of 2011. So, it's still fairly new to us. But, before that chair he had been driving around another chair since about the age of 10 or so. He usually uses each chair for about 5 years and then moves on to a new one. On Saturday when we placed Ryan in his older chair to be used as backup until his current one was fixed, we soon realized just how weak he had become over the past year. He can no longer drive his previous chair as his left hand has lost so much strength. (the old chair has a different joystick...one that is alot harder for him to control) This meant we had to push him around the house to get where he wanted to go. This also meant he couldn't control the other functions his chair does for him.....recline, tilt, leg elevate, seat elevate etc... When he can't move his body into the proper position, he cannot swallow...yes even his own saliva. So, this meant for most of the day on Saturday, he did not eat much at all. This only added to his frustrations! It also meant he could not get comfortable. Ever since Ryan's spinal fusion in 2005, it changed the way he swallows forever I believe. So, if his head is not in just the right position, he simply cannot swallow. He uses the features on his chair to get him in the correct position for this. And when he can't even control the joystick, this becomes impossible. You can imagine our joy when our wheelchair guy showed up first thing this morning with Ryan's chair all fixed!!! You would have thought it was Christmas over here. I immediately got Ryan out of the old chair and into his new one and the look on  his face was priceless.