Friday, January 3, 2014


We saw our local doctor today. It was a great appointment. We talked about some of the things Cincinnati ruled out. Our local doctor told us that we are past the point of them being able to test and recognize a specific know condition. He said that Cincinnati has consulted with the National Institutes of Health (NIH), which is the government health agency. In terms of how rare Fiona's condition is, either she is the only case, or the first case they've seen. She doesn't fit any known diagnosis.

We realized today that the local doctor (infectious disease) is here to treat illnesses. Cincinnati is trying to diagnose her condition and treat it if possible. Having that clear distinction in our minds helps us know who to call when she gets sick.

In addition to bactrim and amoxicillin, both preventative antibiotics, we've been given tamiflu. Right after we left the doctor's office Walgreens called to say that they didn't have it, but that another location did. We were glad to find it since it's backordered. She'll start a preventative dose when peak flu season hits, she has first person contact with anyone who has the flu, or if she gets a fever.

We talked again about the low grade fevers and her general unwell appearance. His theory is that she is constantly coming in contact with viruses and bacteria, and this is her body's way of fighting off illness.

The doctor said that she is not allowed to go out until flu season is over. It's getting harder to keep her at home. There are so many things we want her to experience.

Fiona's fundraiser

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