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, February 11, 2008
Bo Takes Chicago
Bo models his SuperHero Frubi's in anticipation of sunnier days.
Our first non-medical trip was a great success. Bo was an inspiring addition to the Oley Foundation's regional conference, he crashed the APSPEN professional conference, and attended a GSB alumni brunch! He did have a virus that made him gag and retch with nausea (and his mommie very anxious) at night, and we drove home in a white-out, but we got home in time to hook him up, and we even got to squeeze in a visit with his favorite docs from Boston, Drs Gura and Puder! They agree with Nurse Kathy that Doc Cloney is doing a fine job with his weight; not too skinny, not bloated with TPN. And he even said Puder! Well, it came out as, "puh-puh-puh." But he has the right idea.
Once again, Tio Ren and Auntie Jennie provided invaluable help getting us both settled in and packed up, as well as general Bo-duty.
Medical update: He weighed in this morning at 14.78lbs, and his labs have been reduced from weekly to biweekly! I have mixed feelings about this, as we love being able to consult with our rockin' visiting nurse weekly, but the reduction of draws means a reduction of opportunity for his line to get contaminated, and it also means that his GI thinks he's stable enough to not need to see weekly lab data.
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