WE went to see Dr. Paul Carpenter again at the SCCA. He is the doc
from Australia that eats kangaroo. (yet again another story for another
day) He was our attending when she first
started to have Gut GVH. He put her on a
course of steroids and the like. As we
so politely pointed out yesterday: You
did not fix her!
I explained that I really did not want to return to Children’s for
another round of Chef Walter food and days of Dark Shadows watching.
So here is the plan: She now
is being tapered in a very different way.
She is going to be taking Pred on one day, HydroCortoson on the next
day. She is going to taper off the icky corn oil stuff and the noisy pink
pills and then try to get off the Pred.
Or something like that.
It appears to be pretty endless but then it was pointed out to me
we signed on for a year. Not six months.
Not 9 months but for a year. I
was questioned about what I was doing and whether or not I was home being care
taker. I did not mention I had abandoned
my child for 6 days.
So we wait, we see, we wait some more.
It made me so so glad to know the Dr. Paul does have a beautiful
Crystal ball that he consults on a fairly regular basis. He did say it appears to be cloudy most of
the time.
We can wait, half way there.
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