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

Welcome to Our New Chapter!

We did it! We are finally blogging. Is that the right term? Anyways…having just moved here to Alaska we are trying to find the best ways to keep in touch. So I will do my best to keep the blog updated with something new about the family. Even if all it is is a new Smile Box or photo in the corner. So let’s try to catch everyone up on us. Uriah is doing great at his job. We are having to adjust to him being gone more often and for much longer hours. He is also in the Young Men’s Presidency which takes up a lot of his time as well. He just recently went on a canoeing trip as a precursor to the week long trip they are planning in July. I complain too often about him being gone so much but I truly am proud of him! Ok...and a little jealous. Being a Recreation Major, I would love to be the one who got to go on camping and canoe trips. With all the talk about Uriah and Camping, Isabelle has caught the camping bug. We make tents for her weekly in the house and we are getting brave and are planning to try a backyard camping trip to see if it is possible to survive an actual in the forest camping trip this summer. I think I am most worried about the mosquitoes (or as Isabelle calls them, Bugsquitoes). They are everywhere! Everyone talks about how scary and big they are. They start out big and easy to kill, then they get smaller and faster and meaner. I wish we had the big ones back!
Isabelle is slowly adjusting to being so far from family. It is hard not having the ready made friends she had in Colorado. She has a new imaginary friend everyday. She is so creative and smart! I think Uriah and I will end up trying to put her in an early start program before kindergarten, we can barely keep up with how smart she is becoming!
Abinadi is growing like a weed. Sadly he is allergic to just about all the same foods that Isabelle is. At least we are now prepared and ready to keep such a difficult diet for him. He is into everything and such a boy! Everything is fare game for going in his mouth or being destroyed. He is getting his first two teeth and just started army crawling. I love this time when you can see how much they learn everyday. Not much going on with me. We are still in the decision stage of whether or not I’ll try to finish my degree here, or get a job. Just keeping busy being a Mom. Maybe I’ll finally finish all the crafts and quilts I have started that are still laying around unfinished, or finally getting around to accomplishing some of my goals. We love it here in Alaska! I have already told Uriah that I think we could retire here. He just keeps telling me that first I should survive a winter, and second it is far too early in his career to retire. So well see. But it is gorgeous here, and everyone is so nice! They haven’t seemed to have progressed past the 90’s though. It is quite interesting. Well I hope that gives you a little update of us! There will probably be a lot of little posts to start to get everyone caught up with what is going on in our lives. We love and miss you all!

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1 comment:

Our Family said...

Alaska! That sounds so exciting! I can't wait to hear all about your adventures!