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.

Monday, November 2, 2009

Lots of Halloween Fun!

Halloween is so much more fun as your babies grow older!
We hosted our Joy School Halloween Party. They had a Halloween Parade, pretend Trick-or-Treated, decorated cookies, and memorized a cute poem:
Five little pumpkins
Sitting on a gate
The first one said,
"Oh, my, it's getting late!"
The second one said,
"There are witches in the air!"
The third one said,
"Children, beware!"
The fourth one said,
"We'll run and run and run!"
The fifth one said,
"Let's have some fun!"
OOOOOOH, went the wind
And OUT went the light
And the five little pumpkins
Rolled out of sight
It's a poem I've heard a lot and love, we turned it into a cute finger play. I found it again on this cute website that has songs and poems for children for FREE! Check it out. It don't really like the music they have chosen for most of the songs but their are a lot of different songs, and lyrics that you can never remember. http://www.kididdles.com/
Here are our completed Halloween Costumes:
It's amazing what buying some different ribbon can do. I know, I know, I said I didn't want to spend any money but found I didn't have what I needed to finish the costumes. So for $5 I bought ribbon for Isabelle's Cinderella and I got about 9 yards of it for that price so there is plenty left for future projects. We tried and tried for Abinadi to find something at home, but he grew out of everything just before Halloween, so when we saw this cute monkey costume for $9 we couldn't pass it up. And yes I know it looks like a bear, but I promise it has a tale! So at least it wasn't the $40 I was afraid of. So all in all I think I am getting better at being money wise. Let's hope it sticks!
Thanks Uncle Jared for the Cinderella accessories! They were the finishing touches we needed! And truly made her feel like a reel Cinderella!
We also colored pumpkins, then carved a couple with Daddy. Isabelle had to use a spoon and refused to stick her hand in the pumpkin...yep, she's definitely my princess!
They also got the chance to go to a little haunted house at Uriah's office. The people were really nice and didn't try to scare us, they just stood there quietly. Isabelle was slightly afraid until we started talking about what she saw and made her say "Hello" to the monsters. Then Daddy had to point out a skeleton at a desk and tell Isabelle that he worked so hard, he died at work! After we were done, all Isabelle could talk about was, "I never seen a REAL Monster before!" and "That guy died at Daddy's work! I hope Daddy doesn't die like that!" Sometimes I could just...........my husband. It makes me chuckle now, but it was difficult conversation to have to explain that it was all pretend and no one really died at work!
So here is how the family with Food Allergies did Trick-or-Treating this year. I originally planned on exchanging all the candy Isabelle got with candy she could actually eat, but after much thought, I realized that wouldn't be anything special for her because she is allowed too much candy already because I feel so guilty so often when there is so much other food she can't eat. So we decided that instead she would get 10 cents for every piece of candy she got this Halloween. I thought it would be a safe amount because, remembering when I was a child how you would get one piece of dinky candy at each house. You know the ones, the tiny tootsie rolls, or the really hard pieces of bubble gum that tasted nasty and couldn't really blow bubbles. We also weren't planning on going to too many houses. Isabelle would then be able to choose if she wants to buy some candy or something else with her money. We went around our block and because the kids were too tired and too cold we only hit half our street and a few other houses, yet we ended up with

two large buckets full! Over 100 pieces of candy! And I don't mean the dinky candy, I mean the miniature good candy! So Isabelle and Abinadi have $6 each. And Uriah and I ended up with a whole ton of candy that we love but never buy because of the food allergies. We are all very content with the situation!

2 comments:

Jim, Becky, and Kids said...

Sounds like you had a nice winning situation there! We're totally impressed with how much candy these little guys receive too! I love the Cinderella costume; you did a great job!

Heather & Aaron said...

Great costumes! I am glad to hear Uncle Jared came to Cinderalla's aide. We love you all! I keep my eye out for a Cinderella dvd all the time so I can still be her favorite Aunt :o)
Love Aaron and Heather