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.

Sunday, September 27, 2009

Fall Fun!

We hosted Joy School this week. It was a blast…and very tiring. Our topics were the Joy of the Earth, and the Joy of the Body. So we did a lot of playing in the leaves, and exercising, we also made bread. I don’t have much to say, but here are some adorable photos we took! It was nice that it made me get out and truly enjoy the fall that we are having. That is the one thing I have truly come to enjoy from Joy School. It is not some intense program to prepare them for school but rather a tool to help Isabelle and me learn to enjoy life and each other. To laugh at and appreciate her curiosity for the 10th time that she got out of bed to ask: “I have a question. My question is….”, and for the 10th time that I responded, “Go to bed or you will lose a privilege!” It made me get out and appreciate the beautiful views that we have from our street.
It helped me notice how advanced and smart my Isabelle is and realize that I chastise her far too often for being too smart for her own good. Abinadi as well as he jumped in to play with all the children and I was shocked to find that he can hold his own.
(But I often wonder why I buy teethers! Yep that's a sock he's chewing on.)
I am truly finding that I have a lot more to learn from Joy School than Isabelle does. Ahh…the beauty of growing up, whether you are turning 20 something or 4 you find in life that you always have something to learn.


Elena Harrison said...

Yo! You should put pics of your new house on here so we all can see!!! I love Fall weather. Leaves changing color, colder temps outside, and snow is on the way!!

Elena Harrison said...

The above was from me, Michael :)

Uriah, Kaelynn, Isabelle, and Abinadi said...

I'm a little paranoid about putting pictures of our house on the internet. I doubt that anyone is stalking our family, but I always have a fear. So sorry, no pictures of the house. It's just a boring looking brown house anyways. :)

Elena Harrison said...

SO send some via email!!


Jared and Vanessa said...

Wow..it is so beautiful up there!! How are things going? You are such a good mommy!! Your kids are so cute. Sorry for the bunch of random thoughts. :)

Nana said...

Hi, from Nana, Trying to learn this "thing". Electronics and old people....Your Halloween outfits were outstanding. You are such a great, creative Mom with all you have to deal with...food,etc. You get the KUDO award from me!!! I love the pictures, also. I wish we could be there, but this bloggy thing is a great substitute. You are all missed and loved much. Mom