Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Monday, July 28, 2008
Good News, and Okay News
Good news, Bo's direct bilirubin has remained stable at 0.1 since late last year. Okay news, since he's really wiggly and is cutting a few more teeth, he did not gain any weight in the last 2 weeks. In fact, he lost a hair. I still say he's ~20#, 28" and head circ 47cm. More pix tonight, I promise.
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