(Re)gressive Behavior

Feeding, feeding, freeding. Screaming, screaming, screaming. We are now on Day 41 of ACTH, mid-way through the weaning process, and all the craziness is really taking a toll on us. Basically one of us has to be with her 24/7, so Devon & I are back to full-blown exhaustion.


Watching the sun rise -- something I can really appreciate since it's against my natural bio-rhythm to be awake at such a time in the morning. However, lately I've been seeing lots of these. . . . (Note to parents, the whole night owl/early bird phenomenon is biological & real, not just bad or obnoxious behavior. So let your kids sleep in, and don't consider them lazy -- they'll get their stuff done in the evening while you're snoring away before Law& Order even starts.)

This is part of the reason we're so bummed out these days. Jordan has regressed many months in terms of development, and I really hadn't appreciated how far she has come until now. They are subtle differences in her actions, her behavior, her muscle control, but important ones nonetheless. And now they're gone!?! Her health isn't that great, either. Cold sweats on her head, face, shoulders, while having purple legs that are NOT getting enough circulation, lots of Tylenol & leg rubbing to try to control that. A urinary tract infection, probably due to the supressed immune system (I think we'll be lucky if this is the only infection she gets during this treatment), for which she is on Augmenten. Frighteningly high blood pressure, which, thankfully is now basically under control with a drug called Lasix. Diarrhea from the Augmanten, and probably dehydration, too (we're off to the pediatrician tomorrow to review her latest set of lab results to see if we need to "fix" anything else). And although she isn't full-on barfing like she was in the spring, she's always wet due to contant gurgle spit-ups. It just seems so strange to me to put the milk directly into her tummy, yet see it drain out her mouth. . . reverse plumbing I suppose.

One amazing thing to me is that Avery sleeps through all of this, even when her door is open. Hallelujah!! And it is LOUD screaming. Jordan's really found her voice, finally, but this isn't the way I would have chosen to go about it.

So, that's mommy's bleary-eye medical report for Jordan, from the pre-sunrise hours of the night.