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 21, 2009

First Try……..Failed!

Ok, so I know this isn’t very blog worthy, but I figure I am writing this blog to keep in touch with everyone. And if you have known me long enough you know that I am terrible having conversations on the phone. I am just not a phone person and never have been. The only persons that I consistently have ever talked to on the phone is my Mom and Uriah.

Ok…so back on topic. This is what I what I would talk to you about if I actually did get around to calling everyone.

For those of you who are just now catching up with my family, you need to know a little history. Isabelle has several food allergies and Abinadi has decided he wants to be just like his sister and has just about all the same allergies. They are allergic to soy, apples/pears, milk, and quit a few other fruits and vegetables. For those of you who are like me and never looked at the ingredients on your food, you have no idea that SOY is in everything! It is an emulsifier and preservative. To put it in different terms, soy makes up 25% of all Americans’ calories! Now I am not talking about soy milk or pediasure. I am talking about your everyday store bought food, your fast food, and just about everything else. To make matters worse, if you find a food that is soy free, it usually has milk or apples/pears in it. So for the past couple of years we have been searching for food that my children can eat. We found a few brands at health food stores, but sad to say that since health food has become more popular and their products are more popular, these brands have sold out for profit and now put soy in all their products. (Soy is the cheapest of all vegetable oils)

Ok, sorry for that rant…back to the story again. Well about 5 months ago I had come to the realization that I could no longer find soy and milk free bread. So I had to start making all our breads from scratch. The cookies were the next to go, but that didn’t break my heart too much, cookies are easy. But now all the crackers we used to buy now have soy. Crackers aren’t so easy. I’ve been looking for recipes for a while now but hadn’t tried anything yet. Uriah had been TDY these last two weeks and I had hoped he would find some crackers in the lower 48. But sadly they all had soy too.

So I gave in today and tried making some butter crackers. I don’t think I got the recipe quit right. I might change how I cooked them. But I think I need a different recipe. They kind of came out like sugarless sugar cookies. Not my cup of tea. Isabelle liked them, but then again she likes anything new because her choices are so limited.

I am still debating if I want to try a new recipe or keep working on the one I have. It has taken me several tries to get the tortilla recipe finally right. So maybe it just needs some perfecting. I do have to say though that Wilton’s fondant rolling pins and mat are awesome for rolling dough. (Especially if you don’t have that much counter space) I use them for everything.

So that’s my boring story that I wanted to share. I know it’s long. I really just wanted to share the fact that making crackers…not so easy. But the story doesn’t make too much sense without all the history. So thanks for reading my rambling. It wouldn’t have taken so long to tell if I had told the story over the phone, but then again, that’s a lot of phone calls.

If any of you have any good cracker recipes or tips, I am open to suggestions! Please help if you can. If not, you are all going to get an update of every trial and failure in this cracker baking adventure. So if you don’t want any more boring long winded stories, please help!

We love and miss you all!

4 comments:

Marie said...

Hi there! I found your blog via Uriah's FB profile. We went to the Zoo together. I just wanted to tell you Kaelynn that I don't know how you do it with all of these allergies? My middle daughter is allergic to milk, but in one of the mild forms (she can't drink milk, but can eat dairy - weird, huh?!?) and that has been a tiny bit difficult. I can't imagine having to make so much food from scratch! I wonder if there are any support group websites out there where you can get recipes that they share, and other ideas, to make your life easier? You guys have a beautiful family, and I chuckled when I saw that your sons name is Abinadi. Shortly after I converted I read his name in the scriptures and I said "A (as in apple) - bih - naw - dee". My friend who was reading scriptures with me then just started cracking up and I knew I must have messed it up. It brings a smile to my face to remember those days :)

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

Ah-bih-naw-dee is actually the german pronunciation. So he gets called that every now and then. (For those of you who don't know, Uriah speaks fluent German) It's so funny because everyone pronounces it that way and are soooo woried when I correct them that I am offended. I have to laugh because that is kind of his nick name, and we all know his name is going to be mispronounced for the rest of his life. So we might as well laugh and enjoy his name!

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

I forgot to add that I've looked but have never been able to find any current emails, webpages, or groups for support. I've been thinking about making a blog with tips on cooking and dealing with food allergies, but I wouldn't know how to advertise it so that people could see it. It's a thought in the works.

Our Family said...

Wow, that sounds like such a pain! I've never even thought about making crackers. Your kids will love that you're trying to give them some variety, though. I like your idea for a website to support others with the same food allergy struggles.