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.
Monday, October 3, 2011
Shana Tov!
Orientation at the new job. First exam of the semester. Nerves.
My cubicle is smaller and drab. It's somewhat depressing to see in its bare state. That is not why I am there. And as long as I can keep that thought at the top of my head, I can enjoy the blessing that it is.
My sister posted a gauntlet she laid down, to scare yourself, pushing past your comfort zone, once a month. She is doing it! I am doing it! It is scary!!!
Friday, September 23, 2011
ch-ch-ch-ch-cherry BOMB
So I dropped the Bomb on Tuesday and packed it all in today, Friday.
I get a week off (paid), that's good. I spent my whole industrial career there, so now I feel very confused, that's bad. We are covered by my old employers' insurance until my new one kicks in, that's good. It's through COBRA, that's not all bad, but I have no idea how much that will cost, so that's a little bad. I don't have to move or make big changes that will traumatize the kids or Bo's medical state, that's good. It requires a commute, that's bad. I have no gaps in employment, that's really really really good. I'm feeling very insecure from all this change, that's bad. Leaving was gonna happen, and I would be facing a change no matter what, so on the balance, this is all good. This kind of seismic change is terrifying considering the responsibilities I have towards Bo's health and wellness, and being this freaked-out can only be bad. But hopefully it's short-lived, and that's good.
On the balance: it's all good. God is good.
Tuesday, September 20, 2011
New Job, New Maze of Coverage Q'a
I tendered my resignation today with mixed emotions. My whole industrial career has been at one company. I've worked and learned about different aspects of the business, they sponsored my VERY expensive MBA, and supported Bo through an extremely comprehensive insurance plan.
I am jumping into a new company and a new position. I know they have medical insurance, but I haven't seen the fine print. Not knowing makes me a bit nauseated, but there was really no other option. So jumping with a net of unknown quantity. So, now that the cat's out of the bag, the blog can be re-opened.
While I considered a nationwide search, and even a change of career, as second and third options, staying put and changing as little as possible was what seemed the best option for us, while Bo is still small and fragile. Being close to family, and the known quantities of hospitals, doctors and pharmacies was the conservative call.
Wednesday, June 15, 2011
Thah z ah han drid dahllahs of scah ch
We spent our vacation in Boston on Beacon Hill, the native environment of the reclusive Boston Brahmins aka WASP. The "quaint" cobblestone and brick sidewalks proved no match for my crazy highend stroller. HA! Take that, Boston. Plus, we spent quality time at my BFF from grad school's play palace (condo in Cambridge), where there was an abundant supply of trains, cars and garbage trucks.
Above, Bo with the guy who saved his life, Dr. Puder.
Sorry, the title comes from our neighbor who had a broken bottle of scotch in his trunk, presumably potables and comestibles for watching the Bruins. "that's a hundred dollars of scotch!" he lamented, as he held up a dripping box and carried over to the garbage can.
Friday, May 27, 2011
imaginarium
he plays hospital with construction vehicles as patients.
he wants to be a crab for halloween so he can pinch people.
he wants ahn to be a sea creature. shark comes most naturally to her.
I imagined Bo grown up for the first time in my life. I could almost feel my cheek against his tux on his wedding day. I never even allowed myself to dream of that until today.
he wants to be a crab for halloween so he can pinch people.
he wants ahn to be a sea creature. shark comes most naturally to her.
I imagined Bo grown up for the first time in my life. I could almost feel my cheek against his tux on his wedding day. I never even allowed myself to dream of that until today.
Wednesday, May 18, 2011
pics
ok, so the sd card with all the Easter pics was corrupted and they were pressed onto a CD (nice save, Jose!), but now I'm having issues with that! Anyway, these are more recent, and you can see how much Baby Ahn adores her Bababababaabab-Bo!
Monday, April 25, 2011
Beaster
In a fit of domestic creativity (which is as rare as the ivory billed woodpecker), I fashioned an Easter Egg dying activity for Bo and his toddler buddies on Saturday using stuff we already had at home (tumeric for yellow, rotting blueberries for purple and some ancient jello packets for red, orange and green). And after they went to bed, the Easter Bunny crafted up their baskets using an old pair of green sweatpants cut-up into "grass" and tied around their Spring pj's rolled up like rosebuds. Bo had a blast being the Easter Bunny all day Sunday, delivering his and Ahn's baskets to me and Jose. He was soooo awesome at mass (no children's church, doh!) and behaved through the worlds' longest service (okay, it was Easter, so like I should be surprised?)
pics will be uploaded tonight!
pics will be uploaded tonight!
Subscribe to:
Posts (Atom)

