Reality Check

A month is a long time in the life of an SMA baby. That point was driven home recently when Bekka and I suddenly realized how different life in February is from life in January.

On Janurary 11th, the cough assist machine was a suggestion. We would sometimes give him a treatment a couple of times a day just for practice and therapeutic purposes - but he didn't really need it. On February 11th, the cough assist is no longer an option, it's a way of life. We don't wonder if he needs a treatment, we wonder how often.

The blue bulb syringe - Ollie's great nemesis in life - used to be a once or twice a day annoyance. Sometimes during feeding, sometimes just because he was rattling a bit. Now it's a many times a day event. (Who's counting anymore?)

And now we have a nebulizer. Happily, it really seems to help him breathe a little easier and loosens congestion up, but we surely didn't need such a thing a month ago.

All the info on SMA and all the stories from other parents tell you that 6 months is often a turning point when life gets harder and the road gets rougher. When everything is going well, you say to yourself, "Hey, this isn't so bad. Little guy is doing great!". Then you find yourself preparing for a consult about a feeding tube and wondering whether a car ride is such a good idea because he might get choked up.

February 5 was six months.

Reality can be a harsh mistress