Thursday, November 27, 2014

Fiona's cape

A few months ago I requested a cape for Fiona from Capes4Heroes. Her cape arrived a few weeks ago, but with all of our crazy I'm just getting pictures posted. Fiona loves her cape. It's beautiful green satin, with flannel inside. A huge thanks to Capes4Heroes, and a generous sponsor!

Monday, November 10, 2014

sick girl

Poor sick girl. We went to the doctor on Thursday, and the ER on Friday. She's had a steroid and an antibiotic. They did labs and a chest xray. One of the fun things about an immune deficiency is that they do a viral test when she gets a cold. It's not all that helpful to know what the virus is, but it's interesting to find out.

I got some of her labs back today. Her white cells are normal, which is high for her. Her lymphocyte count is 1.0 (some labs will list it as 1,000), but the result came from a different lab than we usually use, so I'm not sure how to interpret it. Her IGG is down 350 from September's labs. With replacement she's at a normal level still, but I think we want to see it higher.

We should know more about how she's recovering tomorrow when the steroid has worn off. Today she's congested, has a fever, is cranky, and sleepy. She's loosing her voice, and probably has a sore throat. This is what we dread. There's no way of knowing if a minor illness will hit her hard, or if her replacement antibodies will help her fight it.

Being on an antibiotic has 2 disadvantages. They didn't see a clear source of bacterial infection, so the antibiotic may not help. It may increase her risk of developing an antibiotic resistant infection. It also puts her at risk of getting thrush, or yeast. Because of her low resistance the yeast is more likely to become systemic, which means a few months of diflucan.