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.

Saturday, January 16, 2010

Polar Bear Birthday

We went to the zoo for our Polar Bears' Birthday Party. It was fun and cold. It at least gave us a good activity for family time. We got to watch the Polar Bears come out and explore the giant snow birthday cake, and different presents put out for them. Only in Alaska do you get to experience a polar bear's birthday party. I guess they need to give you some reason to go to the zoo in the middle of winter with it being 21 degrees outside, (I didn't dry my hair, just put it in a pony tail, and it froze. Hee Hee!)
Posted by at 1 comment:

Testimony Meeting

I thought Isabelle was playing "School" like she often does, but found out that she was actually holding "Pretend Testimony Meeting." She and all her dolls took turns bearing their testimonies, Isabelle helped the shy ones. Then Isabelle sang a song, and had me sing a song while she played her pretend piano. Then she conducted the music for everyone to sing. It was adorable!
And I promise that she is not always in these pajamas with her hair a mess! It just always seems she is when it is blog and picture worthy. She refused to get dressed even though she had to dress up all her dolls for "Church," and Abinadi is only naked because he was fighting getting dressed and then when I realized what Izzy was doing, I wanted pictures before she changed activities! And yes I have not finished putting away the Christmas decorations yet! Someday it'll happen!
Posted by at 1 comment:

Thursday, January 7, 2010

She is so cute!

They say imitation is the greatest form of admiration.
Isabelle wanted to have earings like me (until I told her how they put the hole in my ears), so she found some "earings" she could wear:
She also wanted strait hair. This is our attempt at strait hair, it didn't work very well!

It's sweet that she wants to be like me! It makes me smile! It's also a lot of fun!
Posted by at 2 comments:

Wednesday, January 6, 2010

Sorry, Here's some Venting!

Uriah was studying his scriptures last night while I was laying in bed feeling sick and pregnant like I do every day. He came across this scripture; Moses 4: 22 "Unto the woman, I, the Lord God, said: I will greatly multiply thy sorrow and thy conception. In sorrow (Footnote: Pain) thou shalt bring forth children, and thy desire shall be to thy husband, and he shall rule over thee."
He said it should help me feel happier about being sick all the time because it is in the scriptures that women will have pain through pregnancy.

I guess I am not as spiritual as he is because if it said it in the scriptures that women should be miserable, it just makes me more annoyed at those women who are glowing and feel great throughout their whole pregnancy. It didn't make me happier at all! Maybe I should just be more loving and except my fate. We'll see if I can get that spiritual! Hee Hee, maybe some day after I am done being pregnant. :)

I love and miss you all! Forgive my pregnancy venting please!
Posted by at 2 comments:

Sunday, January 3, 2010

Snow Adventures

2010 started with a bang. After waking up at midnight for fireworks (In Alaska they set them off now because you can't see them on July 4th), I spent the rest of the night dreaming about Iraq. This is the first time I have done that since returning from my deployment.

But the real adventure was camping at in the mountains at 3500ft in a snow trench. The night wasn't too bad. It only got down to about -5.

Here are a couple photos of my sleeping arrangements.































As always, the scenary was beautiful!


Posted by at 7 comments:
Subscribe to: Posts (Atom)