He weighed in at 21.8 lbs, 28 inches and 48cm head circumference. That's a big head. Thanks for the new hats, nanimal! His head is rapidly outgrowning the ones he had.
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, August 28, 2008
Looking Back, Leaping Forward
There was a relative lull in the blogging action when one of the three other MID babies we know of suddenly passed away from transplant complications. This may seem odd, but for those of you who have ever suffered the agony of a close friend or family's medical complexity, you may understand that we felt her death was as if she were part of our family. And at the same time, we were watching our amazing Bo struggle with and command new milestones. And we can't help but think that we could have so easily been in that other family's situation. But for the Grace of God, go we.
And here, the marvelous birthday cake Jose's mom made for Bo in June (yes, I have a backlog of pix). And Bo himself.
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