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.

Thursday, August 6, 2009

Fun with CURLS!

So I have learned with curls that it is not so much as you training the curls what to do but that they train you how to do the hair with however they curl. For those of you who have never dealt with curly hair you probably think I am crazy for thinking that your hair can train you. Let me tell you it is TRUE!

With Isabelle we put a little product in her hair and then style it with however the curls react. Today was fun because her curls just fell into a Faux Hawk! The pictures don’t do the 3-dimensionality of it justice.

Sometimes curly hair drives me nuts! Then when you least expect it... it's a BLAST!


The Lee Clan said...

I love her face, it screams "Mom, are you really taking a picture of me?", Isabelle you look so adorable with your curls!

Uriah, Kaelynn, Isabelle, and Abinadi said...

She absolutely was thinking THAT! Hee Hee. I have become one of those parents like in movies that constantly have a camera near by and are video taping everything and the kids are annoyed. I just want to share our joy with everyone and realized that a picture is worth a thousand words!
That's not too awful is it? I think they'll thank me someday...I hope. :)

Melanni said...

This is one amazing hairdo! I think I'm going to have to adopt the philosophy of having the curls train me b/c Ali has curly hair and so far I have not been able to tame it. Most days it's just one frizzy pooof!

Uriah, Kaelynn, Isabelle, and Abinadi said...

For Isabelle I found that to keep her hair from frizzing all the time, I have to put product in it. Detangling/leave in conditioner products work well. :)
Then you have to repeat it after every nap or too much play. :(