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.
Wednesday, June 17, 2009
Bo and Sam!
This is a pic from our visit with the O'Connors in Chicago a few weeks ago. We had a great long weekend in Chicago with Tio Ren and Auntie Jennie, and the O'Connors! We spent Saturday morning at the Museum of Science and Industry. Most of it in the Great Train Exhibit. We had scheduled this weekend to go to Chicago in the hopes of crashing Digestive Disease Week at McCormick Place, but I wasn't registered, and our luck getting a $25 guest pass ran out with our only possible host, the Dutch grad student sent to present their MID genetics work. While I'm grateful that she was gracious enough to answer my email, my emotions cycled from bummed, to angry, to dismissive, back to mad. Oh well. We had a great time catching up, sharing tips and tricks for care, playing with toy trains, looking at toy trains, and impersonating trains. As a famous person once wrote, "trains=toddler crack."
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