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, October 29, 2009
Breaking Radio Silence
We wanted to surprise my sister at her wedding, because she was essentially trying to elope, but wanted my parents there. So to preserve the surprise, I couldn't bring myself to update in the fear of spoiling the surprise. We successfully surprised the bride and groom, and got Bo to Hawaii and back in one piece! The only downside was that I ended up getting h1n1, but thankfully it was mild for most of the time I was ill. Still recovering in Michigan, but delighted that we had such a successful long distance trip. Bo's cast came off less than 24 hours before our departing flight. What a crazy month.
Monday, October 12, 2009
Killing Me Softly with Raffi
We're a little behind on cool music for kids. My girlfriend has been feeding me her children's hand-me-downs culled from their collections while they sleep. I suspect she gets rid of, ahem, gifts, these gems to me because they have caused her enough brain damage, I mean, joy. Her boys are 9 and 5, so some stuff is as much as a decade behind. This, apparently, has no effect on Bo. He loves Raffi. Did I mention how much Bo loves Raffi? And the Wiggles. And Wonder Pets, who I thought I'd love because there is a duck named Ming-Ming. Except I discovered said duck has a "cute, childish" speech impediment. I wuv dat. No, wee-wee. I wuv it. Without music, driving the 100 miles to my parents would be hell. So, here's to you, Raffi!
And thank you, Ms. J for the Percy and James trains. Yes, I know all their names.
Friday, October 9, 2009
Baby Aunt
Friday, October 2, 2009
Ready to Celebrate
Thursday, October 1, 2009
Love Gramma
Overdue Update
Bo got his new blue cast Tuesday. He was not a fan of the cast removal process. A motorized pizza cutter attached to a vacuum cleaner that sounds like a muscle car. And even though the x-ray didn't hurt and we talked about it before hand, this was also not a desired event. Nonetheless, his tears all dried up the moment the worst was over and said, "all done!" The nurses gave him a ton of toys and a Thomas Train sticker. We will return for a follow-up in 3 weeks, and hopefully that will be then end of that.
Yesterday we spent the bulk of the day on 7South at DeVos in Grand Rapids for observation during infusion of Pamidronate (the bisphosphonate product that should help keep the calcium in his blood so the bones can grab it. If it works, then we will add an additional IV medication that will actually drive the calcium from the blood into the bones (a thiazide). The infusion was uneventful (yay) and we just watched a ton of Tommy Train vids, played in the playroom and hung out. The Nephrologist is such a gem, and I appreciate his care, knowledge and intelligence more with each clinic. The GI doc had clinic today and could not get away to see Bo, but sent her nurse. But since she and the neph are in close contact, it's all good. We will come back for clinic with both in 3 months.
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