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 15, 2009

4th of July Celebrations! (Or lack there of)

When you think of the 4th of July you envision back yard BBQs, picnics and parades, and FIREWORKS. Well here in Alaska everyone seems to see a different picture. The majority of people here spend the day fishing or gardening. Exciting huh? There are only a couple of places that do fireworks, and that’s at midnight, and the main one is done at a baseball park after a game. Not really family friendly. You can’t really blame them for the midnight fireworks because that is the only time that it even gets a little dark. But it isn’t nice when you have children sleeping. So Uriah and I decided to go hiking again. We finally gave in and bought two children carriers so that we can hike more easily, and because we can’t find any other hikes that are stroller friendly. This way we can also plan more hiking trips too! We had a wonderful time hiking! Sadly we didn’t get to the top of the mountain. Partly due to the lack of trail, (we were on a back county trail) but mostly due to children being tired. Isabelle hiked at least a mile and half up the mountain. She was having so much fun walking and talking about all the plants and things she was seeing! I was so proud of her, also grateful that I didn’t have to carry her all the way up. J I wasn’t surprised that when we decided to turn around she was ready to be carried all the way down. She just sat in the carrier and talked to herself about all her new plans for hiking. Abinadi loves the carrier. He was so cute especially when he fell asleep on the way back down. We then went home and spent the rest of our fourth resting the evening away. Happy Fourth of July!

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