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, January 30, 2008
A New Hat! Thanks, Tung!
Although it hasn't made it even close to freezing today, and I had to fight to get into my car because the doors were frozen shut, we had a great day together. Jose built a fire at noon, and Bo and I played tummy time games, sitting up games, and ate cereal.
Bo loves his new hat. My sister in Hawaii made it for him. He looks like a little goblin in it with two puffy ears on top. I had to include a goblin-face expression. We are so lucky to have another great day with our little goblin.
PS thanks for the comments; this love and support helps me be the best mom for Bo, and Bo and I really appreciate it
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