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, August 2, 2009

Canoeing we will go...

So I got back from my week-long adventure canoeing with the young men in the Alaskan wilderness. It was a great trip that made my back ache. We left Tuesday ahead of schedule. The weather was rainy and we all hoped it would break, but to no avail, it rained...a little.
Tuesday we hit the water and canoed across a short lake to our intended first campsite. Although the site was nice, we were diapppointed that it was so close...so we kept going. We portaged through a water portage--which means if you were light enough you could float. But two adults were too heavy so I got out and pulled us through. The $80 breathable waders I bought was money well spent!
We portaged twice more across two more lakes before we called it a night and set up camp. It rained a lot Tuesday night into the morning, but from then on the weather was great. A little overcast and few showers, but otherwise, sunny and great temperatures--about 65 degrees. All in all, there were 11 portages ranging from 50 yards to 3/4 miles. But we put our camps at all the right spots so the long trips were either at the end or beginning of camp. For example, Thursday night we camped at the beginning of a 1/2 mile portage and took our time to carry our canoes to the other end that night. In the morning we packed up camp and carried our gear to our waiting rides.
The highlight of the trip came while canoeing down the Moose River. We were the lead canoe and came around a sharp right turn and about 20 yards in front of us stood a female moose snacking on river grass. We promptly started to back stroke, as not to hit her, and scared her away. But it was cool to see a moose in the Moose River!

1 comment:

Jared and Vanessa said...

I loved catching up on your blog. You have such a cute family!! So you live in Alaska, huh!!! Sounds like so much fun. We are trying to go there or Germany next.