My Kid is a Damn Nutter

[Clodfobble]

I am tired.

Kids had their two-year colonoscopies yesterday. Minifobette's internals are significantly better. Not completely in remission, but at least halfway there, maybe more.

Minifob's, on the other hand, can only generously be called as bad as they were before. He has somewhat less inflammation in places, but also some new ulcers that were never there before, as well as new damage in his esophagus which was unaffected last time we looked at it two years ago. The damage has moved, certainly; whether it is greater than before or just different is hard to quantify.

The thing is, I know for certain that if we had happened to scope him one year ago, he would have been comparable to his sister. Entocort is his miracle drug, but we had to go off it a year ago in favor of immune suppressors which wouldn't have as many long term side effects as the Entocort, and things have been sliding downward ever since. And not just behaviorally, we're talking real Flowers for Algernon shit here: there are major things that he could do the first few months in Kindergarten that he can't do anymore. Last year he never even met his nominally-assigned special ed resource teacher. This year he was pulled out of class at least once a week, either because he couldn't cope or because the gen. ed. teacher couldn't cope with him. This part isn't news, of course, we've been living it, and I honestly went in there yesterday expecting his current gut situation to be roughly equivalent to what it was two years ago. I wasn't prepared for the possibility of it being worse, though. Losing ground sucks. Ulcers are bad.

Anyway. Just venting a bit. I'm not upset about it, just tired. I went back and reviewed my notebooks from a year ago, looking for any other things we were doing differently back then besides the Entocort. I did find a few things with some small promise, so I'll be making adjustments accordingly, on the off-chance that they were contributing more than we thought they were at the time. In a few weeks we'll have the followup with the GI doctor and find out what he wants to change, if there's anything we can change. I know there's at least one other immune suppressor option that we might be able to switch to, so maybe it will work better. Maybe he'll want to put him on daily pain meds--these also have their share of long-term side effects, but Minifob did do fantastic right after he got an ibuprofen IV in the hospital last March. I dunno.

But Minifobette is rocking it, at least. She sat there plateaued for so long, I suppose it's only fair that she finally have her day to shine in the sun while her brother lags.