Keys and Oops from Kinn-Ming Chan de Velarde on Vimeo.
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, May 4, 2009
Friday, May 1, 2009
Angst
I read my girlfriend's blog about Max (see the link on the side bar for Max) and it made my whole soul ache. My avatar nodded and said, "Amen, amen, I say to you, amen, girl. I hear you." It makes the teeth of my heart chatter when I think about the everydayness of Bo's medical needs. People outside of this reality, including my own parents and sisters, feel intimidated and anxious about it. They probably feel sorry for us too.
But the funny thing is that I don't feel any of those things for myself or other families like ours. I spend my energy more on compassion than pity. More angry with bad specialists and skin-flint insurance companies than helpless wanderings.
But I remember a few times that I was so in denial that I forgot to hook up the baby after a day of playing. And every time I see a pregnant lady, I feel... so sad.
But the funny thing is that I don't feel any of those things for myself or other families like ours. I spend my energy more on compassion than pity. More angry with bad specialists and skin-flint insurance companies than helpless wanderings.
But I remember a few times that I was so in denial that I forgot to hook up the baby after a day of playing. And every time I see a pregnant lady, I feel... so sad.
Sunday, April 26, 2009
Hi-jinx @ the children's museum
Okay, so vimeo let me upload this clip, but then had weird layout issues. Can't win for losing. Add trains to the list of faves.
Saturday, April 25, 2009
Getting Our House in Order
I am so psyched! 4.375% 15-year fixed rate (refi) mortgages and 4.75/% 30-year fixed rate mortgages are available NOW. The mind wobbles.
So that being said, onto the care and feeding of an old house. There are lots of projects, but anything receiving the stick-end of moisture is going to be the priority. Re-roof the garage, replace all the outside sills on the north of the house, etc.
Thursday, April 23, 2009
I stand corrected
Wednesday, April 22, 2009
Alonetime
Bo's vocabulary is EXPLODING. He can count to nine on his own (except seven is hard; bisyllabic). He likes saying "no, no?" and "No! No!" as a response to most things these days. Has an incredible musical ear, and will almost be good if you play John Lee Hooker for him on the stereo.
I've been contemplating the question, "do you reject the glamour of sin?" for a while. I know I answered yes. But I'm not really sure if that was a truthful answer.
I know that facebook definitely weakens my resolve in that arena. Surprise. A site designed to give succor to even the faintest glimmer of Narcissistic personalty disorder by combining relentless self-involvement, anonymous lurking, and nostalgia. AAAAAARG! FB is the devil! just kidding, sort of.
Vimeo hates me. Still pix is all you get for now.
And the ear infection persists. So we try again for 10 more days and a more sophisticated infusion pump.
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