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 13, 2009

This One is for Grampa!

Isabelle has now become a huge fan of classical music. Whenever we are in the car I keep channel surfing because the radio stations up here will play some random weird music. One day I was finally tired of it and turned it to the classical station. Isabelle was very excited and called it her “ballet” music because it sounded like the music from one of her Barbie movies. We can now never drive anywhere without Isabelle demanding to listen to “ballet” music. What makes it even better is that she is convinced that she will get Uriah to change his mind and have “ballet” music be his favorite. We have had many conversations about how you can like many different types of music but she is still determined that “ballet” is the best and Daddy should think so too!

The even funnier thing is that you find with classical music you can’t sing along when you like the song and I have found myself absent-mindedly conducting the music. That is before I realized I was doing it and had to stop and laugh at myself. :) Thanks, Dad!

Just to add for fun, you might think I am crazy…or dorky!

Many of you who know me, know that I am a sucker for a romance story. I normally don’t try to broadcast that fact but I wanted to add this story…
I love romance stories mostly because I love a happy ending. There is enough of my own drama in life to not to need to read someone else’s sad sob story and with most romances you can be certain that everyone will live happily ever after because of course in stories, love conquers all! Well if you have ever read any romance novels written within the last couple decades you can be 99% certain that there is going to be a dirty scene in it. So much so that church leaders now warn women against reading romance novels because mostly all include such dirt.
So I have avoided mostly all romance novels for the past few years. I had a conversation with my mother about how we wished she hadn’t gotten rid of her old Barbara Cartland romance novels written in the 70's and had the crazy idea that I should try to find some to buy. So I went on ebay and found 100’s of her books for sale for cheap. I am now the owner of around 60 Barbara Cartland Historic Romance Novels. They are quick easy reads that teach that love is sacred and for marriage only and the dirty scenes are described as, “She only knew her love welled up inside her and joined with the love he felt for her. Then as he carried her into the sky, she found the beauty and wonder of it was so perfect that nothing could ever spoil it. It was the love that came from God, belonged to God, and was theirs for ever,”
I know, I know, Cheesy, but no smut. I had really got thinking about the fact that when Isabelle was older there would be no likelihood of finding romance stories she could read without having to blackout about every other page, and I would be the one that would have to read the book to black out the pages and that just ruins the whole point of me not reading those stories either. So while most people would (especially those in my family) call me a dork, I think I've made a good decision. Especially during football season when my husband monopolizes the T.V. I love you Honey!


Jared and Vanessa said...

You are so smart!! I didn't know romance books DIDN"T have smut in it. I thought all were the same...good to know there are some good ones out there. I remember riding to seminary and your dad playing classical music. I am now a fan too!! My kids love it just like your little girl. They call themselves "dancing princesses".

Elena Harrison said...

That is AWESOME!!!! Classical music ROCKS!!!!!