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, December 30, 2009

A Few Cute Christmas Stories

We sat down Christmas Eve with our Christmas books and scriptures to tell the Nativity story. Isabelle had her little people nativity set so that she could follow along. As we were starting the story, she quickly took over telling the story. It was adorable! She took her little figures and had Uriah and I pretend to be the innkeepers and say, “No Room”. She then continued to tell the whole story. Did I mention it was adorable?!
She did the Nativity Play in Joy School, and she was quoting much of the play word for word. (I would have added the play video clip a while ago, but it was too long.) We then had to all sing “In a Little Stable” I guess we are doing something right as parents. It was a really sweet experience and it felt good to know that she truly understood that Christmas is more than just presents and Santa.
We were also getting ready for Santa that evening. She had been saying for a couple days that she was going to wake up and see Santa. As we were trying to explain to her that Santa is so quiet that she wont hear him, she replied, “So, but I’ll hear his reindeer on the roof going clip clop clip clop! Reindeer are loud.” She said it so matter of factly and I guess you can’t fault her logic. I can’t even count all the songs, stories, and movies that mentioned reindeer paws on rooftops! One of the presents we got for Isabelle were movie tickets and a promise of a Mommy Daughter Day to go to the movies and see the Princess and the Frog. She had been asking for a while to see it and didn’t understand why we couldn’t just get the movie from netflicks. After the movie I asked her if she liked her Christmas present and the Mommy Daughter time. She sweetly, truthfully responded, “Yes, but I really really love the present Daddy made me, and Abinadi loves it too.” Awwww! I’m not the jealous type when it comes to the love and appreciation in our family. It just truly touched my heart that Isabelle really loved and appreciated the cradle that Uriah made for her. I couldn’t wait to hurry home and tell Uriah what she had said.
This is Isabelle reading to her "Baby Pinkie" in her Daddy's Gift. I am so blessed to have a husband so talented to be able to make a cradle from no plans in a day, to make this Christmas special for our daughter.

This is why Isabelle said that Abinadi loved the gift also. He wouldn't stop climbing in and out of it. He would throw Isabelle's dolls out, and grab a toy, or my shoe, and climb in and sit. He was having a blast!

Hope your Christmas was as special and full of love as ours was! We missed all of you at this special time!

With Love, from the Orlands!

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