About Us

This blog is changing, just as our family is changing. It was originally started to keep in touch with family and friends far away, but when you face a life altering disease EVERY aspect of your life is changed and in some way effected by it. Now I need a place to vent, to share, to help people understand the struggles that we face as a family with 2 children that are struggling with the Disease Eosinophilic Esophogitis, and with all of us having multiple food allergies. So this blog is becoming my journal so to say, an outlet for me to express my frustrations, share my joys, and put all information into one place for those that want to know. Why share something so personal, and often too hard to bare? Well...so much of this disease is silent. We work so hard to help our kids lead a normal life and no one sees the struggles faced daily, and I think it is important to let people know and understand.

What is Eosinophilc Esophigitis?

What is Eosinophilic Esophogitis? Also known as EE, or Eos, or EoE.

First let's start off by saying, there is NO CURE! There is NO FDA approved treatment. And often the only form of successful treatment are large doses of steroids and/or elimination of "trigger" foods, which sometimes as in the case of our 2 boys is an elimination of ALL foods. Forcing them to be on an Elemental Formula ONLY diet and water.

Second let's start with the layman's definition as I know how to explain it, and then I will add links with better medically explained and more in depth definitions. Eosinophils are a form of white blood cell, and in persons with this disorder these eosinophils attack food as if they are a parasite, causing damage to nearby tissue in any part of the digestive tract (in our case the Esophogus). This causes reflux that often does not respond well to reflux meds, vomiting, pain, aversions to food, rashes, diahrea, constipation, and many more symptoms like leg and joint pain, headaches. All of which these symptoms lead to more and more problems from which many you will learn about by reading my posts.

One of the bests places for accurate up to date info go to: Apfed, http://apfed.org/drupal/drupal/index.php

And of course this blog reads most current posts first, so I'll do my best to label important posts to help you catch/keep up.

Wednesday, July 29, 2009

Not Much Going On

There isn’t much going on here, so I thought I’d give you little tidbits of the last week. First we had another hike. Uriah went with the youth. Isabelle begged and begged until we let her hike with her Dad. She stayed in the carrier all the way up and walked down most of the way. We are learning that the reason why there are so many short hikes in Alaska is because instead of making a longer safer trail with a lot of switch backs they just go strait up the mountain. Uriah did a lot of hand over hand scrambling with a toddler on his back. (Scary Huh? I found out after he came back down.) Abinadi and I took a different trail where he happily napped the whole way and I didn’t have to worry about falling off a mountain.

Thank Goodness for technology! The kids and I hung out in the truck watching a DVD while we were waiting for Uriah to finish up with the youth.

Abinadi is trying to grow up so fast. He can now climb up stairs and we are working on descending them now.

Second Try….Almost There.
We tried another round of crackers. They are more cracker like. But a little too much like Wheat Thins. (They are the only type of crackers we can still buy.) I want a recipe that is like Ritz. The good thing about this recipe is that there is a lot of room to play with for changing the flavor and texture. I got smart with this batch and instead of cookie cutting them I used another fondant tool and roller cut them before baking.
So that's the update. We hope you all are having a little more fun then us!

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