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, December 10, 2009

Blessings in Disguise...

...AND OH BOY WAS THIS A GOOD DISGUISE!
Well I mentioned before that Abinadi just had his first birthday. We had all these great plans for a party and a birthday cake and we were going to let this be the first time that Abinadi got to try butter for the first time to see if he would react...but then everything went wrong! I got so sick the weekend before his birthday. (That's how we knew!) And my sickness was so bad the week of his birthday, I ended up in the ER and had to get drugs. I felt like the worst mother in the world! I couldn't even pull myself together to make a cake for my sons first birthday.
He got the snow suit for his BDAY, he sure looks like he's having fun!

But then the I got the impression that maybe we shouldn't let Abinadi try butter yet! (You definitely have to listen when you get a message from the Still Small Voice!)
Well a week later I was hosting Joy School and the kids were decorating graham crackers with icing. I was excited because I made ornamental icing which is powder sugar, water, and mirengue powder! So Abinadi could have his first frosting! But low and behold he started "reacting" imediately! I couldn't figure out why, then I read the ingredients in mirengue powder...there's milk in there! I had no idea! I've been using it for years and never read the ingredients because I thought it was simple powder egg whites! I even learn something new everyday.
Then a couple weeks later I gave him a graham cracker and he started "reacting" again! I couldn't believe it! I know that all the ingredients in the crackers were safe, I checked the box at least 5 times. At least so I thought, so I started nit picking all the ingredients...wheat, good...sugar, good...cream of tartar, hmmm. Isn't that just a baking spice? So I checked our McCormick Cream of Tartar, and all it said was cream of Tartar, so I did research online and low and behold Cream of Tartar is actually a by product of grapes from the whine making process! (I bet you didn't know that!) And there were a few warnings out there that if your child has a grape allergy that they should stay away from it! I have been wondering for about 6 months if Abinadi had a grape allergy, I guess this kind of solidifies it in my mind!
So those of you who know me, know that I despise being pregnant! I am so sick and useless almost the entire 9 months that it is trully a trial for me! But I have realized that my being sick came as a great blessing! Crazy thought huh? But with how quickly and how much he reacted to such small amounts of milk and grapes, I am terrified that he would have ended up in the ER if I let him have a cake and icing made of butter and mirengue powder! Thank goodness for those Blessings in Disguise!




2 comments:

Our Family said...

Wow, that is a blessing! I am sorry that you're so sick. I hope you feel better soon.

Jim, Becky, and Kids said...

Congratulations! I'm sorry you're so sick; I can definitely sympathize. Pregnancy isn't fun, but it sure is worth it!