Friday was our first clinic visit at Vandy since our evaluation in Pittsburgh. We are still patients at here in addition to being patients at Pittsburgh Children’s, but Vanderbilt now defers to Pittsburgh on transplant related matters. Vandy’s role is to maintain Thatcher’s health, check his weight, keep his meds updated, and keep him healthy until transplant.
Thatcher had gained weight since our last visit (which is always a small victory for us) despite having less of his Pregestimil supplement in his milk while we were away in Pittsburgh and not wanting to eat much while teething. Dr. Gillis (the hepatologist) is always pleased with Thatcher’s weight and development and comments that she “just doesn’t know how he’s doing”...it’s a God thing! He’s still only about 15 ½ pounds (11th percentile in weight) and in the 28th percentile in height. I think they are just impressed he’s on the chart at all. Some of the patients in Thatcher’s condition look much worse with distended bellies and skinny limbs. He’s hanging in there and hopefully we won’t have to wait to see him get like this!
Nothing much to report from clinic. I updated them on our trip and commented that it would be a big day once we return home from Pittsburgh after transplant. Dr. G agreed, and while there is a “honeymoon” period, she reminded me that it is certainly not over at this point. It’s their job to prepare us for transplant and life afterward as best they can. This keeps us grounded.
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