Practicing standing, two bottom teeth, and a spliced line. That last addition was something we were expecting at some point. I guess that point was yesterday. As luck would have it, the surgeon who is applying for Omegaven here at Bronson was the one to splice Bo's line. And the leak the original sprung was really really tiny.
And it all happened during the window when he's off his TPN. Not that we ever enjoy a trip to the ED, but we had Nurse Colleen with us and all the other fortunate things mentioned above. Bo was even good enough for a bit of a nap while we waited for the surgeon. And now I have both his cell and home #'s. He and Puder trained under the same guy; needless to say, they both believe in a level of medical practice I like to call Real Medicine. Thanks, Doc!
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.
Saturday, May 31, 2008
Three Big Things Before the First Birthday
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