And... still napping 1x/day. Usually down btwn 12:30 and 1:30pm; waking up btwn 3 and 4pm! The extra long naps are certainly due to all the abx, but I'm hoping they won't disappear all together as he starts feeling better.
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.
Sunday, March 15, 2009
3.5hr nap!
And... still napping 1x/day. Usually down btwn 12:30 and 1:30pm; waking up btwn 3 and 4pm! The extra long naps are certainly due to all the abx, but I'm hoping they won't disappear all together as he starts feeling better.
Thursday, March 12, 2009
The Prodigal Son
Wednesday, March 11, 2009
First Haircut
Tuesday, March 10, 2009
The Disco Center Babies
This is Bo playing with the babies at the daycare he visits Tuesday and Thursday afternoons for playdates. He loves the babies! And hopefully asks for them any time we put him in the car. The Discovery Center is a Montessori-influenced 0-6 year old day care where the liberal and academic tend to send their kids. So they do cloth diapers, "follow the baby," have extensive food lists for each child, et cetera. They are so lefty, however, that they can't just follow one pedagogy. Most of the care givers are Education people, and have been there for over 17 years. And lovelovelove babies. Bo is a little rock star there. All the ladies love him. Babies, toddlers, teachers. What's not to love?
Monday, March 9, 2009
Friday, March 6, 2009
Great Visit

This is from Bo's visit with Gung-Gung while he was in-patient at Bronson a few weeks ago (for heart attack). Both guys are doing well. Both had drs visits today. And both were good, so far. Bo will need his quarterly visit with his GI in a few weeks for us to feel good, and my dad will need his echo cardiogram results interpretation next week for us to feel good about that.
Dr. Doom was happy with Bo and said he looked the best he's ever seen him. He had an ultrasound and the bladder looked clear (nothing suspicious in there) and his kidneys looked as good as they did 3 months ago with no additional stone formation.
He does have a site infection, but the blood cultures came up negative, so the antibiotics are just to treat the site, where the line enters his chest. It got a little red and puffy. Tomorrow is his last day of antibiotics, and hopefully this will be the end of that.
Wednesday, March 4, 2009
Pantless Wonder
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