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, November 4, 2011
Thanksgiving every day!
Bo used to be such a light sleeper that we were prisoners in our own home. I did not put laundry away for literally years. A squeak of the floor, the rattle of a dresser drawer handle, the light in the hallway; all of could lead to a blood-curling scream that might take an hour to quell. He was not only a light sleeper, but an ANGRY waker.
It strikes me as funny tonight, as I am banging around, the baby sleeping peacefully several feet away with nothing between us but a wooden door, Bo getting ready for bed, humming the Star Wars theme song, loudly; how easy it is to give up the niceties you imagine as non-negotiable. And how nice it is to have the luxury of those niceties back.
Speaking of which, there has been some drama in the transition to new job, and specifically with Bo's line.
Yes, his line broke this morning. No, he's not in the hospital. Yes it was scary and sad. No, Bo did not cry (although Ahn did, because in their haste to get it fixed, they forgot to bring babyfood- so she was MAD). Yes, my new insurance covers all the medical stuff as my old. BUT no, the nursing coverage is a mere fraction of that. Yes, we are all nervous for the transition. No we have no idea how this is really gonna work. Yes, I still giggle at work, because I still like it that well. No, my cubicle is not any less dreary (although the live plants are a treat that I have not seen in YEARS, so I guess that makes up for the threadbare carpet). Yes, for most people the amount and quality of care Bo has had is unimaginably amazing. So no, I'm not looking a gift horse in the mouth, just sayin that we got used to the gift. But also, yes, I'm finding the gift of enjoying my job has increased my energy level by a billion, so I'm a lot more helpful with the littles.
So, he's not dead, yet. YAY us. BUT, these things still send waves of terrifying panic over all of us. And the fallout can weirdly last a way longer time than I expect, because in the immediacy of the situation, we all just do what has to be done in as calm a manner as possible. And when every thing has calmed down, when you feel like your life is out of immediate danger? That's when you fall apart. So, just so you know. You know?
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