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.

Saturday, September 19, 2009

The Top of the World

A couple weeks ago I took a trip to the top of the world--the northern most point in the United States. It's a little town called Barrow, Alaska.



The latitude of Barrow is 71° 17' 26" N. The top of the continental United States is 49° N and the Arctic Circle is 66° 33' N. Needless to say, Barrow is in the North!

First I flew up there in James Brown Airlines...


Then I saw a town that I did not expect. Barrow is one of the towns spoken of often in Alaska. As such, I thought it would be a little more established. But in reality...there is not a paved street, not every house has running water, there are no street lights--just lights attached to the power lines.










I went to take pictures of a senior officer's visit there. But while I was there, I had one goal...take a dip in the Arctic Ocean.



Before I post the pictures, you must be warned...I have a body for Alaska...it doesn't see much sun.































My other souvenir I came home with was the flu. The Air Force hospital hasn't told me yet if it was H1N1 or not. I guess asking for flu test results in less than 3 weeks is asking for too much. Kaelynn teases I got the flu from the Arctic Ocean...but I don't think polar bears or walruses carry the flu.













Hi, this is Kaelynn. My husband doesn't know that I am adding this, but he asked me to look at his pictures from the Barrow trip, in them I found one random picture of some lady's mullet. It made me laugh so hard! Of course my husband is the one to take a picture of someone/something like that while he is supposed to be taking scenery pictures. Hee Hee, and I couldn't resist adding it to his post!

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!

Wednesday, September 2, 2009

First Day of Joy School

Well we started Joy School this week. We are really excited. We are in a Great group of 5 kids with parents who are all very involved and just as excited for the year like we are. Everyone is also very understanding of Isabelle’s allergies and are ready and willing to work with us. I woke Isabelle up and she ran into my room screaming, “Joy School, Joy School, Today is Joy School!” She was sooooo excited! For those of you who don’t know, Joy School is an in home preschool program that focuses on values and preserving different childhood characteristics. We each take turns hosting and teaching the kids so I have 4 weeks off and then one week where I am responsible for everything. I like the thought of a program teaching children and parents how to enjoy childhood and life. They grow up so quickly.
If you want to check it out go to:
http://www.valuesparenting.com/joyschool/index.php



This is the Joy School House a made for the group. My craft for the month.


These are all our Joy School Friends. Yep, Izzy is the little one, she's slouching a little, but I didn't even realize she was this short. WOW :)