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.

Sunday, July 25, 2010

Week Wrap-Up

We have been on a nice, even keel for the past few days with Kara, nothing major has happened. There is something that she's been having that bothers her once in a while but I can't, for the life of me, figure it out. She's been having really icky diapers a few times a day that literally BURN her bottom, even though she gets changed immediately after. I don't know if it's too much fruit, a certain vegetable, something in a cracker that she's gotten, no clue. It's frustrating but it's minor compared to what we've gone through with her in the past.

We have her one month follow up with the pediatric allergist on Thursday down in St. Cloud. I'm really anxious for this appointment and it's the start of a busy four weeks for appointments for her. It's hard to believe the changes we've gone through in this last month. It's been life changing!!!

One thing that we need to talk to the allergist about is Kara's possible asthma. Her nebs are doing wonders and as much as I'd like to think she does not have it, I'm pretty sure that she does. I'm really hoping that he'll run the other environmental and animal scratch tests too so we can have answers to that before it becomes a problem. He had mentioned that we'll be following up with a gastroenterologist but we're one step ahead and already have those appointments made.

One thing that we did this weekend is tried eggs with Kara. I was SO incredibly nervous to give her them but knew we needed to - if that was something she could tolerate it would open up some more options on feeding my babe. After a negative blood test and scratch test for the egg allergy, I decided it was time I try it but I was still so nervous about an FPIES reaction. I mixed the egg up with some of her formula and scrambled it up, it worked out pretty well! Kara loved it, eating almost the entire egg. I watched her like a hawk for the first few hours waiting for something to happen and nothing did! Yay! She has a new food she can eat!!!

That's about it for what's been going on lately, other than three beautiful days at the lake. We are ready to take on what this week has in store for us and like I said, anxious for Thursday's big appointment. I'll keep you updated! :)

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