Things we weren't supposed to do:
1. Cloth diaper without persistant diaper rash
2. Breastfeed without exponentially increased output
3. Go to Boston with insurance preapproval
4. Get Omegaven in Michigan
5. Heal the liver on TPN and Omegaven alone
6. Live past 6 months without transplant
7. Take no medications beyond IV Nutrition
8. Have the same central line since 3 weeks of age
9. Hit developmental milestones on time
10. Catch up to weight/length growth curves before reaching school-age
Yawn. Oh well.
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.
Friday, January 4, 2008
Rebel Yawn
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