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.

Tuesday, July 6, 2010

Attempts #2,026-27

I have learned from this first adventure that when I see the sign saying "snowmobile" trail, and a different trail marked for people to speak up and ask Uriah, "why aren't we taking the person trail?" :o) It was a lot of fun but there was mud everywhere, and often no way around so we had to go through it. Isabelle and I almost lost our shoes a few times. Hee Hee. I did ask Uriah why we took this trail and he said it was the trail they took on their winter hike...when it was covered in 3-5 feet of snow. So no mud or streams to trample through. Next time I think we'll stick to the people trail. :o)If we weren't walking through the mud, it was through tall grass and weeds as tall as Isabelle. If you look in her hand you'll see a ton of wildflowers that were too aften saved from falling and getting muddy before she was. I'm really glad I didn't let her pick flowers till the end of the hike.
Isabelle didn't like almost loosing her shoes, but she loved that she got to finally "play" in the mud and streams. I'm not a big fan of mud and dirt all over kids, so she was loving it because it really never happens. Abinadi was somewhat bored with this hike, I think it was because we were so focused on not falling that we didn't speak to him much at all. Or let him our of the back pack once. Poor kiddo.
She really is such a beautiful child!
These of course the flowers she proudly saved!
This is our second Adventure. We went to Flattop Mtn. We didn't hike all the way up, they have some gorgeous trails all along the bottom half of the mountain, great for families.
We spent the week before making binoculars, a bug jar, collection bags, and an explorer book with a map and ideas and things to look for. The book also has space to add all their photos and things they collected and space to draw everything. This whole trip was about being explorers and noticing nature. In some ways it made the hike much more enjoyable for the kids, in another way I was going nuts with Isabelle fussing the whole way about "when are we going to catch a bug?!" Lesson learned: Don't do a bug jar unless you're willing to sit there forever and stop a million times. LOL!
End of June and we found a few snow patches still around. Isabelle loved it and we had to hike way off the trail so she could touch the snow. It was adorable. But I wouldn't suggest it in the future because they are breeding grounds for mosquitos. There were so many they stopped caring that we were wearing bug spray, needless to say we took our picture and rushed out of there. :o)
Abinadi wanted to explore too. Thank goodness for his monkey! (Leash) it gives some good needed freedom for exploration without me stressing about him running off a cliff. Oh and this was me at 39 weeks. All this hiking and still no baby!
Family photo:
So those are a couple of the adventures we've been on lately. We're enjoying nature and family time. Isabelle and Abinadi do well with hiking, I'm excited when the next one comes so we can go on some bigger hikes. :o)
Oh and I just had to add this photo below. This is Abinadi doing his favorite past time during any meal. Cute huh? (And a little frustrating but still incredibly adorable.)

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