chronic amplification

Having a young tot with a chronic disease seems to amplify both the good and the bad. We probably appreciate Isaac's health and milestones more than we might otherwise, but when something new and scary happens we're also all the more concerned. The concern of this week involves what we are going to call a small blood blister on his butt. And of course, we were initally bombarded with all the feelings of fistulae, disease advancement, undiagnosable problems, surgery. But then we took a step back, took some magic breaths, googled for a while, and decided not to be so worried about it for now. Slowing down the alarm bells reminds us to take it easy and of course report it to the doctor. It's not like all of the sudden Isaac is having pain or has any indications that anything is wrong. Of course it's good to notice change, so we'll keep an eye on things and see how it goes.

Everything is going great as far as poop goes. We are just ready to finish up with this long steroid weaning. And for that the doctor is dragging his feet a little to make sure the azathioprine (Imuran) levels are at a therapeutic level for a human Isaac's size. His prednisolone dose is small, but it's still there. And meanwhile he's growing an excess of fuzzy body and facial hair!

And that reminds me, we have tended to downgrade our strict attentiveness to soy. Since Isaac got this last flare under control he has been exposed to definite traces-of-soy foods without any noticable effect. When we get off the steroids completely we will surely play it safe, especially for the first months, but we might be more skeptical than before that it is soy and soy alone that triggers the flare-up. I think the model in our minds is something more like: Isaac's guts have some imbalance, and any little thing is bound to trigger the flare-up at that time. And maybe it was traces of soy, but other times soy might be fine for him, and it might just as well been other grains, dairy, meat, or anything really.