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.
Monday, July 20, 2009
2nd haircut following the 3 hot days we had all summer
I follow the kids on the right so closely, I can see them in my sleep. Maybe it is obsessive. I should ask my counselor what she thinks. Except I don't think my behavior would change regardless of her feedback. But each of their triumphs give me a little more hope and each of their setbacks reminds me what is at stake.
Our friends from Wisconsin are finally home.
And it makes me want to go and prune the hell out of my fb page, and all the insidious "before" it represents. But. I can't bring myself to do it. Because the before and the after are still the same me. So I work on reconciliation.
Father Ken's homily somehow made that word both much bigger and much more accessible than my jumbled thoughts here. But I left mass convinced that it was something worth trying. Something I may not succeed at, but something worth doing.
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