Monday, July 28, 2014

still learning

There's a test called CD45 RARO that they've been doing every few months for a year. I always see it. Most of the results are too high or too low, but I've never understood it until today. I'm not sure I fully understand it, I just understand more of it. Today I know way more about immunology than I want to think about.

I went to school registration for my middle schoolers in the middle of Fiona's treatment. She stayed in her stroller and didn't touch anything. Luckily it wasn't crowded, so not much exposure. I mentioned to my friend that I was planning to home school Fiona. There's no way that I would send her to Kindergarten with her immune system. Her reply was, wow that's dedication. I told her that I just didn't want Fiona to die, and that I would have never considered home school with any of my other kids.

This week I want to put Fiona in a bubble. With her lymphocyte count going down, and her neutrophil count at the bottom of a normal range I want to avoid exposure. Avoiding exposure means avoiding life. Fiona isn't willing to do that. She picked up a big plastic candy cane yard decoration from last Christmas and tried to eat it. I was worried about the dirt on the bottom. She was mad that it wasn't really candy.

Next week we are going to check her igg level before her treatment to see how low it gets a week from her last treatment. I'm curious to see if it changes. Injecting the hizentra into the subcutaneous tissue is supposed to keep her level even through the week.

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