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.

Tuesday, August 18, 2009

“Terrible Twos”….A Breeze Compared to the “Too Smart for Their Own Good Threes”

So I was recently sick with a cold that my children had passed onto me. Uriah was being the wonderful husband that he is and was taking care of the kids for me. When I had had my fill of Isabelle’s misbehavior, I sent her off to her father for a lecture. Here is the footnote of the situation:

She sweetly walked up to her father saying, “Daddy, I sorry for not behaving very well.” Uriah then went into a lecture about the need to listen and behave. Isabelle being herself was in her own little world singing and talking to herself. Uriah asked her if she was listening and she sweetly answered, “No.” Uriah responded with how she needs to listen and asked her what he was talking about. She sweetly repeated in her own words a simple synopsis of what he had said. Obviously having no care of what the meaning of the words were.

Realizing that he was not getting through to her, Uriah asked what we should do to help her listen and behave. He asked if we should give her a spanking when she misbehaved. First she answered yes, then changed her mind and said, “No, cuz when you give me a spanking I get mad at you.” Uriah asked again, “So what should we do when you are misbehaving and not listening?”
Isabelle’s response: “Daddy I sorry for not listening very well.” All this said while she walks off playing and starting to misbehave again.

…Ahh the joys of parenting.
It made me smile and laugh that at least she didn't have the "Too Smart for Her Own Good" behavior just for me!

No comments: