Learning what works

It's Saturday of "steroids week," and things are better than they were earlier this week.  Caleb was exhausted and mostly miserable for Wednesday and Thursday, but Friday was an improvement.  I stopped giving him the new med to "help" with side effects, and switched back to Tylenol.  This might have helped.  I'll have a better chance to talk with the clinic team about that next week.  It's all a learning process and I can see that it will take a while yet before we figure out how things can work during these weeks.  Even when we think we've got it figured out, things still will change. 

Part of the challenge is trying to figure out what to do with a particular, anti-social 4 year old.  Our house is not well designed, nor is our family well prepared for someone who does not want to spend time with others, yet needs to be glued to mom.  I'm learning how to deal with this, but there are very frustrating times.  His sisters are hurt when he refuses to interact with them, and that hurts to watch.  I can't be frustrated with Caleb, because it's the drugs.  And so I'm frustrated with the steroids.  But then, we need the steroids to help his body gain strength again, and so I can't be too frustrated about that either.  Sometimes I find myself feeling almost like I'm trapped. 

But we're learning.  Thanks to Aunt Sara's idea, we learned last steroids week that headphones can help give Caleb some time away in the presence of others.  We set him up with the Skype headset to play alphabet games on the computer.  This was a nice break for everyone.  He's also learning about lego.  I picked up a new lego set, and he meticulously followed the directions to build a lego camper.  He's now fascinated with lego, little lego as we called it when I was a kid.  And my girls are learning to play together while Caleb does his thing.  Hopefully this is the way we can get through this time, until Caleb as we know him returns next week.