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, October 30, 2009

Utah Trip Part 1

We recently went to Utah for my nephew's baptism. It was a great opportunity to see family. Half of Uriah's family came out, and my parents drove in from Colorado. The first thing we did was go to temple square. Isabelle LOVED it. We live 2 blocks from the Anchorage temple. So excitingly we get to see the temple every time we go to church. It's a mini temple on the church parking lot. So Isabelle was excited to see a temple so BIG! We were also having fun teaching her that there are many temples around.

Look closely. If you understand this picture, than you get our humor. I couldn't resist taking a picture of it!

While walking through temple square you always run into the sister missionaries ready to talk to you. It's funny how people react when you say you are from Alaska. It's almost as good as saying you're from Mars with how interested and surprised people seem.

We had a tour of the new conference center. (I didn't know that you could walk in and they had people ready to give you tours at a moment's notice.) While we were in there, Isabelle was getting restless so I let her walk away from the group and as we were walking up the isle, another tour guide started talking to Isabelle about how he loved her curly hair. He asked her if she would share her hair with him. Which Isabelle responded, "No! It doesn't come off!" I love how smart 3 year olds can be!

We of course had to take pictures of Abinadi with Abinadi, and Uriah Lehi with the Lehi. It was funny to me how no one in Utah was surprised that his name is Abinadi, but they were surprised that we don't call him by a nick name. I wanted him to grow up knowing and being proud of his name! I have no problem with friends and family giving him a nick name. It took a lot of prayers, and guidance by the spirit to finally admit that that is what his name should be, and when I finally came to that decisions I knew that that is what he should be called! And when you know him, you know that he is a strong willed child, ready to take on such a strong and difficult name! So we bought a small print of the picture to hang up in his room, thanks for that suggestion Aunt Heather.

Well that is the first instalment...keep tuned for more about our trip to the zoo next! We love and miss you all!!!

1 comment:

Heather & Aaron said...

You guys were awesom and I loved getting to know Kaelynn better. I feel like we really connected and I found a sister in her.....not just for eternity but someone I can talk to when I am feeling down or stressed! I love you all and wish we were closer....Love, Heather