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.
Tuesday, December 30, 2008
BFFs
In the lastest thumbwar between the GI and the nephrologist, the GI won. It was the more conservative call of the 2, and really a pretty reasonable compromise. Nephrology suggested increasing the volume and decreasing the cycle time of his TPN. Instead, we are staying steady with both time and volume of TPN (was really dreading an increase of volume), and a decrease of calories. While the cheeks are cute, he is simply too heavy for his height. So, we will see what we see.
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