So, just when I thought we were not going to be putting VeeGee under general anesthesia for a while, her GI had decided that he really needs to do a suction biopsy to rule out Hirchsprung's disease. Of course I'm on it like a fly as soon as we get home and, of course it describes everything about VeeGee (chronic FTT, chronic constipation/diarrhea, weight loss . . . .). He also wants to do a scope of her esophagus to see what kind of damage is/has been done with the chronic vomiting (now just retching, of course, but she's getting more and more ick out as time passes).
I am not going to believe or really entertain this dx until/if it's made. I'm betting (hoping) that the issues are more related to the combination of her being the age she is with the temperament that she has plus low tone. But it's still just sobering to know that there are still these hurdles. It's never over. I so frequently think, "We're getting to the end of this. After this surgery, she'll just be a 'normal' kid." I've actually even felt guilty lately when I read about some of my friends who have kids with for real life threatening issues, like, it's not that bad. The tube's no big deal. She's breathing now. Not eating, but . . .
And then I'm reminded that her issues are systemic, permanent and that we may keep discovering facets of them into adulthood.
This is my little thumbs-up girl, right after surgery this last time. She's so AMAZING!!!!
I'm VeeGee's Mommy, K's wife, an academic, a writer, a teacher, a gardener, a chef, blah blah blah. I write about my journey as an adoptive mom of a kiddo with Pierre Robin Sequence, and other stuff like politics, race, religion - you know, that stuff we're not supposed to talk about!