What We Did at Duke Today

Now that the queen has been moved into the proper throne room and has been handed the royal bottle, it's time for the medical update.

We spent about two hours at Duke today. Most of it preparing for the big event tomorrow: weight, height, blood pressure (which caused her blood pressure to rise so high that the computer wouldn't take it, so they tried again with the same results). They stole about six vials of her blood which was highly traumatic. Unfortunately, the vein in her arm slowed down after just three vials and they had to poke the other arm. Mommy let them do it all, so Noa was really into Daddy for quite a while thereafter. But all joking aside, Noa really did amazingly well. She has a new sign for "upset" and it seemed to help her a lot to be able to express how she was feeling.

Finally we met with a nurse practioner who went over Noa's history with us, and went over the events to come. She did a brief a exam, but Noa was pretty much done being poked at. We asked if they'd ever done this procedure with a child as tactically defensive as Noa, and she said she thought Noa might be the most sensitive child they've seen.

She explained to us that their theory with this process is that the stem cells sometimes find their way to the brain and then are activiated and become brain cells, but they may also de-activate and just be absorbed into the body. They believe this process takes place over the course of six months to a year. Some parents have reported things happening more quickly... but they believe it takes longer. But because these are their own cells, there should be no harm from the cells themselves.

We had been told that the infusion process was about 2 hours, but today they said that it may be as long as 4 hours! We expect most of this time will be spent with Noa screaming her brains out. We can only hope that she exhausts herself eventually. It's basically four hours with an IV drip in her arm... but the last time she had an IV in her arm she spent the entire time screaming and thrashing and trying to pull the dang thing out until the doctors just gave up and took it out. But that's not an option on this one. We just have to keep it in.

Our start time for tomorrow has been shifted slightly, from 11:30 to 1:00pm (though we go in at noon). This is so in the morning we can discuss with the doctor how much of the stem cells will be infused and how much, if any, might continue to be preserved. The plan is to infuse them all, but we want to press on that assumption and ensure we are entirely comfortable with that decision.

So... we're excited and nervous and getting some rest for the big day ahead.

Happy voting everyone!

Thanks for all your good wishes, prayers and love - it means so so much to us!