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.

Monday, September 12, 2011

The "Talk"

Well it's official. We finally had THE "talk" with the GI doctor. For those of you who don't know what talk I'm refering to, it's the one about getting a g-tube. Don't know what a g-tube is, it's a tube that goes directly from your child's stomach to their belly so that you can feed your child formula through the tube. It is a scary devestating topic. To realize how sick your child is...even though they seem so healthy.

I think the hardest part at this moment is that we are teetering on a line. If Abinadi was a little worse the doctor would be demanding that he gets a tube...if he was a little better she would think he would be fine without it. I guess the simplest way to put it that he's surviving and not thriving, so the doctor is turning the decision over to us to get our opinion on how we feel our son is doing and where we think he will be in the next two months. It gets even harder that we also need to make this decision on a time frame...within the next 2 weeks so that we can trial an ng-tube (a tube that goes from the nose to the stomach to feed through) to see if he can tolerate the feedings and if they make a differience. Then to get the tube 2 weeks later so that he can have at least 2 weeks of continuous care afterwords before the move back to Colorado. At first I didn't want to think about it, how could I even come to make a decision like this? This is life altering. I wanted the decision to be easy when we came to this point, for the doctor to tell us absolute yes or absolute no...I just really didn't want to think about it.

But as we stood waiting for the Tuesday night family race to start Abinadi had another brakedown. He didn't want to go, he didn't want to run, he just didn't feel good. And in that moment I broke down in tears as well. This wasn't my child, my child LOVES running, LOVES being out and doing family activities. He's not been feeling well, he's not wanting to drink his bottles and he's constantly exhauseted. I was so glad at that moment that I had sunglasses on so that no one could see my utter break down, but in that moment all I could think of was, that while yes Abinadi could continue to survive but I owe it to him to have the chance to thrive! And no matter how much I hate the thought of a tube, if that could make all the difference in his development and growth don't I owe it to him to at least try and see if it makes a difference? I'm terrified of what this will mean and the trials that will come with it, but I have the strong feeling that I owe it to my son to do everything I can to make him the healthiest he can be.

Posted by at No comments:

My Children AMAZE ME!

I am so overwhelmingly proud and amazed by my children! To the point that I think someone should do a story on them, or recognize how amazing they are. I guess every mother wants their children to get the recognition they deserves. I just am amazed everyday by their strength. Isabelle who has worked through all her asthma issues to become an AMAZING runner. She's ran multiple 5ks, and she just ran a 1.2 mile race ALL by herself in 13.50. She's always the smallest person there yet she can run like crazy! Then there's Abinadi who LOVES to run with his big sister! He ran/walked the entire 3k the other night. And practices running with Isabelle during her running club. And often outruns some of those children. It amazes me, and it amazes everyone who sees my kids. I constantly hear comments about them and all I want to say is, "you don't know the half of it." I have to bite my tongue to keep from telling them that this tiny little boy ALSO is on a formula only diet, has asthma, AND is constantly sick with his disease from either seasonal allergies or trialing new foods that cause flares. And we are continuously fighting a delecate balance to keep enough calories in him and hydrated well enough to keep him out of the hospital...yet he is there every chance he can running and playing as happy as can be. I guess I'm just a mother who feels that with how hard they have to work to live their lives daily and do the activities that many take for granted, I wish there was a way to recognize their accomplishments with more than my, "YOU ARE SO AWESOME!" comments and hugs. But I guess it'll have to do because few see the daily struggles to show how AMAZING these children really are!
Posted by at 1 comment:
Labels:
Subscribe to: Posts (Atom)