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.
Thursday, December 18, 2008
Early Christmas with the Chans
Bo cannot wait to see all the Chans! He had appointments from 9:30am-1PM in Grand Rapids today. The nephrologists and the GI were very happy with the trend of perfect labs. We are going to try going back down to 18 hour cycles. The only change is increasing his volume to keep up with his size, and to see if flagyl will help with the reflux.
Packing all the medicine, auxiliary supplies and baby accouterments has taken me over an hour and counting. Still need to throw in my own stuff! Jose is exchanging diapers at the service. It is so awesome having them in town!
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