After Bo's birth, we spent his first 5 weeks of life in the hospital ICU, at the end of which we were told that Bo was born with a very rare and life-limiting condition known as Microvillous Inclusion Disease. There are maybe 60 known cases in US history. They told us we would be lucky if he made it to 3 years of age. And that the only therapy to keep him alive would also be the mostly likely cause of his early demise, from liver damage due to nutrition via I.V. Those were very dark days for us, filled with grief and terror. Last week, we returned home from 6 weeks in New England, where we were seeking medical therapy in hopes of prolonging Bo's life -which our doctors in Michigan said was impossible. The change in therapy was simply substituting fish lipids for the lipids he was receiving, which were plant-based. We didn't know what to expect. We only knew that Bo's liver was already insulted and injured beyond anything we could manage ourselves (his bilirubin went up to 8, where the upper limit of a normal liver is 0.4). As of this past Thursday, his bili was 0.9 and dropping. We remain mystified and grateful for the love, attention and prayers everyone in the family has been sending us. Whereas we were not sure he would make it to his 100 days birthday, now we can even begin to hope for the future and plan for his life with us for years to come. And even though he will most likely remain dependent on an IV for his nutrition for the rest of his life, we continue to feel blessed and amazed that we can now even contemplate a 'rest of his life' to come. Truly a Thanksgiving for us. This is nothing short of a miracle.
