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.
Monday, July 28, 2008
Good News, and Okay News
Good news, Bo's direct bilirubin has remained stable at 0.1 since late last year. Okay news, since he's really wiggly and is cutting a few more teeth, he did not gain any weight in the last 2 weeks. In fact, he lost a hair. I still say he's ~20#, 28" and head circ 47cm. More pix tonight, I promise.
Thursday, July 17, 2008
Where are the new PIX?!
Mommy is exhausted and suffering brain damage, formerly attributed to Post-partum Depression. I've been advised that this is also called Baby Brain, and that my brain will never achieve the sharpness and acuity I once had, that I so desperately want back and that I really really really can't do without.
I'm just so grateful that I did not attempt to have children before finishing school. Because I assure you, while there are supermoms out there, I'm not one of them. And I would never have survived with this restricted brain use.
So, that's my excuse for belated picture posting and thank you notes. All are forthcoming. Now, if I could only locate that frontal lobe...
Monday, July 7, 2008
Bo Takes St. Toms
Okay, this is cheating, I know. But I haven't gotten around to uploading the million pix from the weekend's festivities. I just wanted to say what a great weekend we had, how wonderful it was to see new and old friends, given and chosen family, neighbors, mentors and other babies.
And when I went to mass yesterday, I met the family that Father Ken spoke of in the first homily I heard him deliver. He had talked about visiting them in New England, where they had gone to get treatment for their son who had a medically rare condition. He had gone to sit with their son so that the parents could leave the hospital for a few nights. This story resonated so deeply with me, I was shaking. I knew that I had found my parish home then and there .
So when I met them yesterday, I couldn't stop crying, not the least because they are still grieving the loss of their youngest family member.
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