Monday, December 15, 2014

Sick again

Before we found out about Fiona's immune deficiency I took her places. Every time we went to the store she got sick. I kept her home when she was sick, but once she got better I took her out again. She had a string of viruses that she picked up from shopping carts, and sick shoppers. I thought something was wrong, but didn't know what it was. The year before she was diagnosed she was sick from Fall to Spring.

I'm starting to feel like it's happening again. Every time we take her out she gets sick. It's funny, because we take her out so infrequently I know where she picks up every virus. This one came from Michael's. We took the kids out to pick up some supplies for a project Savannah had at school. We went late to avoid crowds. We were the only family in the store. I wiped the shopping cart with a disinfectant wipe. We did everything short of making her wear a mask and gloves.

I hate how many experiences she misses. In January she moves up to Sunbeams at church. She won't know. She had a month of nursery before we found out she couldn't go back. Most of my kids started preschool at 3. She won't. Even with her infusions it's not safe. We took her our church Christmas party last weekend. One of the hardest things for us as her parents is weighing social development with safety.

Normally when she gets sick I worry, then call all of her doctors, then have them run labs. I'm trying to take a wait and see approach this time. We are going to Cincinnati on Wednesday, so I'll have them check for viruses then.

We are still waiting to hear back from our insurance company about our appeal for her genetic testing. It's a test they shouldn't have denied. I feel like they're hoping that we'll just give up.





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