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

A Hiking We Will Go! And some back yard camping too.

Well it was a fun filled weekend for the Orland Family! It started with a backyard camping trip Friday night, followed by ward picnic on Saturday, finished up by a family hike and lake visit on Monday. Uriah and Izzy slept the whole night outside. I of course was smart and slept inside in the nice cozy comfortable bed. I still was the one waking up with Abinadi to feed him in the middle of the night. I guess you can decide which one is better. Isabelle had a little trouble with the early light in the morning waking her up, but other than that it was a success. Watch the smilebox to your right to see more photos. Saturday we had a ward picnic and I wouldn’t normally mention it except for the fact that we saw a MOOSE. Now seeing a moose isn’t that rare of an event. But this one was cool because it was only a football field distance away. And my husband being who he is took Izzy over to look at it. I thought we were going only a little closer since you hear horror stories about how mean Moose are. Uriah and Izzy kept going closer and closer, (I didn’t want to yell at them because I was afraid it would scare the moose) then I realized that there was a barbed wire fence between us so I went closer with Abinadi. When we got to about 20 feet away I realized that there was no barbed wire on the barbed wire fence. I was a little freaked out! Ok a lot freaked out until Uriah told me all the warning signs to look for if the moose was getting angry. Then anger over took fear when I realized I hadn’t brought a camera! Oh well, lesson learned. Then on Monday Uriah took the day off and we had the whole day together as a family. We went on our first family hike up to Thunderbird falls. We all had a lot of fun, and was quit surprised at how tropical Alaska could look. We especially loved the plants with leaves larger than Izzy’s head. It was only a little disappointing because of how far away from the actual falls we were. Happily Izzy had no clue and thank goodness for the zoom on the camera we got a decent picture. We then went to the largest Lake around here (the one Uriah Canoed across) and collected some pretty rocks. Beware Papa Allan, they might be sent to you to make some jewelry. All in all it was a fun and exhausting day. We are now looking forward to this coming Fourth of July weekend for some more special family time. We’ll let you know if we do anything worthwhile.
Click to play this Smilebox scrapbook: Ou First Hike
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