Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Friday, July 30, 2010


We are going camping this weekend. I'm a bit nervous and not too sure about what Kara is going to eat while we are gone. Fruits, and formula, I suppose, along with her barley cereal and Kix. I am preparing myself, I've packed the epi pen, the benedryl, the motrin, the insurance card, the letter from our doctor and I think I'll even bring my file of her medical records. Just in case. Oh, and LOTS of diapers and wipes!

As I was preparing the typical camping foods this morning, I checked the labels on everything. Pasta Salad? Nope, can't have it, the dressing is soy bean oil. Rice krispie bars? Nope, triple whammy - rice krispies, peanut butter, chocolate. Hmm. She can't have fruit snacks anymore because of the sorbitol. I picked up some more dehydrated fruit and also some freeze dried fruit. Hopefully she can think of this as her "dessert". She better get used to eating other veggies too, because of the stop on the peas and green beans.

We are planning on steaks, hot dogs and hamburgers so I'll have to check the hotdogs I have and hope she can have those because she won't eat hamburger so I really doubt she'll eat any steak! Poor baby. I think the formula is really going to start being her main food now for a while until we get things figured out better for her. She doesn't really have the patience to sit and drink a bottle anymore unless she's really tired. Hopefully if she's hungry enough this will work. She's still not too fond of it out of a cup though, which is fine with me for now. At this point I don't care if she's three and still on a bottle!

Here's hoping to a good weekend with no food reactions! Life does have to go on and it will be a good getaway for all of us. She's getting pretty good at walking now, hopefully she doesn't learn how to RUN while we are gone!

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