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.

Friday, August 28, 2009

The Best Present Ever!!!

It’s times like these that make my life perfectly wonderful! …and helps me to realize and enjoy the little things in life.

After waking up in the family room, (Uriah is sick with the flu…but that is another post entirely!) I went up to wake up Isabelle so that we can keep our schedule for school. I opened up her curtains. The first thing she asked was, “Mommy, is today your birthday?” I answered that it was and she got so excited and said, “Happy Birthday Mommy!” I was so touched I almost cried. I sat down and gave her a BIG hug. She then jumped up and said, “Mommy I have something for you.” She grapped something imaginary from her book shelf and handed it to me. I said thank you and she told me it is a pretty necklace for me. A pretty pink one. I almost cried all over again! It was soooo SWEET! She helped me put it on and told me that I could wear it Sunday to church.


Isn’t it Beautiful!? You don’t have to use too much imagination to see the beauty in it. Let me tell you it made my day and I began to look at the day on a much brighter side. Instead of having to make my own Birthday cake…I get to have fun baking with Isabelle. Instead of missing out on our camping trip…we’re camping inside, an in home adventure! And instead of having to take care of my sick husband on my birthday…I get the wonderful chance to show him how much I love and appreciate him!

So after all, today is turning out to be a wonderful day. All thanks to the insight given to me from my wonderful 3 year old daughter and her beautiful present.


The Lee Clan said...

The necklace is BEAUTIFUL! Happy Birthday Sis! Love you Lots! Thanks for helping me to look at the brighter side of life!

Our Family said...

That is really sweet!