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.
Sunday, November 4, 2007
Sad to Leave our Docs in Beantown; Glad to be HOME!
Just so no one is fooled, he cries a lot, and loudly. Mostly, when he's fighting his afternoon nap. We knew he was a fighter, but really. And if he feels like Mommy is not giving him enough attention (most of the time).
He yelped for like a minute, and went down like a box of rocks in his own crib tonight.
What a blessing to be home!
Wednesday, October 31, 2007
Tummy Time Victor
Tuesday, October 30, 2007
We can't wait to come home!
The Secret Garden
Monday, October 29, 2007
Back in the Joint: better safe than sorry
Just what we wanted, a weekend in Boston. We have a huge room, and a view of the Boston skyline. Unfortunately, it's because Bo spiked a fever Friday (101.8F) that sent us to the emergency room just as the Red Sox were going to Denver (a good thing, considering the proximity of the hospital to Fenway Park). So far, his cultures have been negative, and his central catheter is still in the right place, so the docs think he just had a virus (or teething?). We'll get sprung tomorrow, we hope, and get to spend the rest of the week packing for our trip home.
This is me and Boo Boo at the beach a mere 100 yards from our temporary house. And a picture of him in his Luke Sky Walker outfit without his hand in his face.
Tuesday, October 23, 2007
Needs a Bath!
Saturday, October 20, 2007
It's the Journey, Stupid
Our fancy doctor at the fancy University of Michigan "we're ranked 12 in US News and World Report" Hospital refused to adopt the protocol to administer Omegaven to Bo. She said that if U of M couldn't get it, then no other hospital in Michigan would be able to get it. This is patently untrue. She also said that it would be too much paperwork for her to do to get it, and that we were legally prevented from paying for it, the U of M hospitals wouldn't pay for it, and she certainly wasn't going to pay for it. This is in contrast to the docs at Children's Hospital, Boston, who put in their own money to start a Foundation to pay for the Omegaven for kids whose insurance wouldn't pay. If she's so against saving Bo's life, why would she bother to be a pediatric GI specialist? What kind of medical practice is this?
I am seriously considering moving to New England for the superior medical care. Actually, Bronson provides care on par with Boston, but they are such a small community hosptial that they do not have a pediatric GI specialist on staff.
I am seriously considering moving to New England for the superior medical care. Actually, Bronson provides care on par with Boston, but they are such a small community hosptial that they do not have a pediatric GI specialist on staff.
Subscribe to:
Posts (Atom)
