He can count to nine. On his own. He knows his colors. He even knows the difference between a tractor and a combine (right? like, huh?). The hillbilly agenda is fulfilled. Here you see Bo waking Mommie up on a sunny Saturday morning. Ah, sleeping in. Now that is a good husband!
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.
Thursday, April 23, 2009
I stand corrected
He can count to nine. On his own. He knows his colors. He even knows the difference between a tractor and a combine (right? like, huh?). The hillbilly agenda is fulfilled. Here you see Bo waking Mommie up on a sunny Saturday morning. Ah, sleeping in. Now that is a good husband!
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.
Tuesday, April 21, 2009
Download Hell
The external hard drive is connected to Jose's machine with a puny USB cable. It takes forever to download these vimeos. So just know that I'm working on it and will have another posted today or tomorrow.
On a happier note, Bo had so much fun with his OT/PT teacher today, he practically ignored me when I came home for lunch. He seemed much recovered from the scaryscary doctors' office yesterday.
And, guess what? Kalamazoo is finally getting our very own pediatric GI! He starts July 14 and is already booked into August. I can't wait to meet him. We will only switch service if we think Bo will get parity quality of care or better. I just remember when he was in the NICU almost 2 years ago, the nurses told me that the new GI was coming onboard in 2009 or 2010, but I totally ignored that. I mean, we didn't expect him to live that long, so who cares if he fellowed at Cleveland Clinic? Now we're just waiting for the pediatrician's office to send over a referral!
On a happier note, Bo had so much fun with his OT/PT teacher today, he practically ignored me when I came home for lunch. He seemed much recovered from the scaryscary doctors' office yesterday.
And, guess what? Kalamazoo is finally getting our very own pediatric GI! He starts July 14 and is already booked into August. I can't wait to meet him. We will only switch service if we think Bo will get parity quality of care or better. I just remember when he was in the NICU almost 2 years ago, the nurses told me that the new GI was coming onboard in 2009 or 2010, but I totally ignored that. I mean, we didn't expect him to live that long, so who cares if he fellowed at Cleveland Clinic? Now we're just waiting for the pediatrician's office to send over a referral!
Monday, April 20, 2009
Line Sprung a Leak = Improved Longer Line
The splice went well, aside from the wailing. No TPN for 4 hours and the tongue depressor splint has to stay on for 48 hours. Attached is a very lowgrade Vimeo of us at the break dance competition at Western a month ago.
Breakin' from Kinn-Ming Chan de Velarde on Vimeo.
Breakin' from Kinn-Ming Chan de Velarde on Vimeo.
Sunday, April 12, 2009
Easter Egg Hunt 1.0
Saturday, April 11, 2009
2 hour countdown
Easter Vigil starts at 8:30pm, but I have to be there early. So in 2 hours, I'll be at the church ready to get dunked. The consolation is that Fr Ken has to get into the font, too. Another bonus, I get to wear a scratchy nylon robe (like a choirboy's), so don't have to dress up!
Here is Annika, Dyann, Bo and Yours Truly.
Wednesday, April 1, 2009
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