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 1, 2009
Love Gramma
This and the following (previous post) pix are from August visit to Great Gramma's and a campsite nearby.
More Face!
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.
Subscribe to:
Posts (Atom)