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.
Friday, November 27, 2009
Tuesday, November 24, 2009
Monday, November 23, 2009
Friday, November 20, 2009
The 2nd of 2 Casts
The second of 2 casts was blue. It was removed less than 24 hours before our trip to Hawaii. Here at DeVos Children's Hospital, he is getting a pamidronate infusion, watching Thomas the Tank Engine DVDs (thank you Child Life!) and mugging for the camera in his Pensacola Beach Tee (thank you, Grandpa Bruce!)
Thursday, November 19, 2009
IEPs and 504s (IHP, too?)
So the bad news is that Bo's teachers will no longer be coming to the house and he will no longer be eligible for tutoring. The good news is because at our annual IEP assessment, it was determined that he had met and exceeded all his goals and he is now academically at or above the skills expected for his age. WooHOO! However, because of the gross motor set-backs resulting from his broken leg, he still has some catching up to do in that area, and he will continue to get PT services for that area of development. On a PT note, he continues to make strides in feeding clinic, showing greater tolerance for tooth brushing, and we are setting the goal of complete tooth brushing in 3 months.
We were able to get his H1N1 from the pedi, too. Hooray! Bo was not too happy about that, but quickly came around when I found the reward sticker stash. He's starting to express new ideas, not just what he literally sees, and not just parroting back what he hears. It's pretty hilarious. We are so blessed.
Tuesday, November 17, 2009
Monday, November 16, 2009
Friday, November 13, 2009
Friday, November 6, 2009
Heartbreak Hill
One of the beloved children I follow; suffering is coming to an end. Send them your energy, your prayers and your love. An unimaginably heartbreaking day. www.gavinowens.com
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