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 15, 2011
Thah z ah han drid dahllahs of scah ch
We spent our vacation in Boston on Beacon Hill, the native environment of the reclusive Boston Brahmins aka WASP. The "quaint" cobblestone and brick sidewalks proved no match for my crazy highend stroller. HA! Take that, Boston. Plus, we spent quality time at my BFF from grad school's play palace (condo in Cambridge), where there was an abundant supply of trains, cars and garbage trucks.
Above, Bo with the guy who saved his life, Dr. Puder.
Sorry, the title comes from our neighbor who had a broken bottle of scotch in his trunk, presumably potables and comestibles for watching the Bruins. "that's a hundred dollars of scotch!" he lamented, as he held up a dripping box and carried over to the garbage can.
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3 comments:
ha ha ha ha!!! cracking up at the title!!! lol. xoxox love you, love bo, love the whole family!!! muuuuahhh!!!!! :-)
what is your stroller again? love this picture and so thankful for that DR.
Did Dr Puder mention anything about the status of Omegaven? I am guessing that it is getting closer to FDA approval because I spoke to a lactation consultant at our hospital and she said the NICU was going to have an Omegaven study done there next year. I hope it happens because its been 3 years and my son is still the only kid that gets it from that facility. Thanks.
Thi Tran
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