Monday, August 24, 2009

"I would do anything for love, anything you been dreaming of...."


Posted Aug 24, 2009 9:19pm
Here in North Carolina, things are going well. Sarai had a pretty restless night, to be expected. Poor baby can’t get used to one place before we move her to a new place. But we were up early, gave her a bath and she was ready to go.

We went to Duke today for a quick visit. The hospital is beautiful and everyone is super nice. They took Sarai in for a weight check and a quick physical. They asked a bunch of questions about her health history, yadda yadda yadda.

The nurse reminded us today that, although they have seen promising results in animals, this study is still very young and they aren’t sure what the results will be. Even if everything goes great and Sarai doesn’t have many or any symptoms of cerebral palsy, there is no way to really prove that it’s because of the cord blood. Sarai will probably come back in 6 months or a year for a second infusion. The children in the study so far have just come back for their second infusion 2 to 3 months ago, that’s how new the study is. So all we can do is pray and hope, for Sarai and all the children in this study. Soon there will be an efficacy study, where they will infuse 50% of the children with their cord blood and 50% get a placebo. We’re glad to get into this before we have a chance that Sarai wouldn’t get her cord blood.

Tomorrow we’ll have a longer day at the hospital. We go in around noon again, they’ll do the infusion and monitor her for a while. The cord blood is frozen with a chemical called DMSO to prevent the blood from crystallizing. When the blood is thawed, most of the DMSO is removed, but some will still remain. The only risk with this procedure is Sarai could have a reaction to the DMSO, but she will be monitored closely. They see this in less than 1% of the children.

Adam and Mim got groceries tonight and Mim and I (mostly Mim) made dinner for Cindy and her husband Justin, and Cindy’s sister Amy and cousin Meredith. It was a fun evening. A little snippet of tonight’s conversation:

Sarai: (makes cute cooing noises)
Justin: She sounds like a little muskrat!
Cindy: How do you know what a muskrat sounds like?
Justin: I don’t, that’s what I think one would sound like.

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