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, October 4, 2011

I believe...

(For those reading this on Uriah's facebook, this is a reminder that this is written by Kaelynn from her blog. Sorry still haven't figured out how to disconect the two.) So one thing great about modern technology is that I have been able to find a large support group through the internet while dealing with all of these struggles. Most of these AMAZING women who have helped me survive so much are experiencing and going through the same trials I have faced and often much worse. And it is through them that I have been blessed with knowledge, support and understanding, and also insight into this crazy life of mine. Recently I have seen many of them posting about how they are loosing or have lost their faith in God, how they question "why." Why do these amazing inocent children have to suffer, how could God allow this to happen, and not be willing to take away their pain? To be honest I cannot say that these questions have never entered my mind, these confusing feelings of why, but through all of this pain and stuggling I can tell you with the upmost sincere heart that my faith has grown. That I know without a shoddow of a doubt that my Heavenly Father lives, and sent his son to earth to die for us. I feel that love every moment that I feel weak. In the "caregiver" world there is a common understanding that there are days where you will fall apart. Days where it just gets too hard and all you can do is cry. So you cry it out, and pick yourself up and move forward. What else can you do? And in those tragic moments when your world is crumbling around you and you can't fathom a way to make it through to tomorrow, I can tell you honestly, you don't magically receive peace, or suddenly feel better, actually that is the moment when you feel those seeds of doubt enter your mind and all you can do is cry unto the Lord, "WHY!!??" Why do we have to experience this? Why does there have to be so much pain? And most importantly: Why do my beautifuly innocent children have to be the ones to fight this? They don't deserve it! But just as in those moments when you feel that missery and anger and pain, that is when I have gotten down on my knees and prayed to my loving Heavenly Father. I have prayed crying my heart out to my Heavenly Father telling him my fears, my anger, my frustrations, my anxiety, and how in that moment it is just too hard for me to bare. I remember the story I heard often growing up when I man looked back on his life as footprints in the sand. He could see times where there were two sets of footprints and he asked his Savior Jesus Christ, why there were two pairs of footprints. And The Savior told him that those were times in the man's life when The Savior walked beside him. The man looking back realized that at times when his life was so difficult and he faced many trials, there was only one set of footprints. In confusion he turned and asked his Lord, why when life was so hard did you leave me? And The Savior answered, those times in your life when you faced those trials, you don't see one set of footprints because I left you, I never left you. Those are the times that I carried you through.... And in those moments when I am down on my knees in utter despair, I ask my Heavenly Father and Jesus to carry me. To carry me through until I am strong enough to move forward again. I want to bare my testimony to you those prayers have ALWAYS been answered! In those moments I feel peace, I feel love, and I feel the strength of my Savior carrying me through. I can't tell you that anything miraculous happens, things don't magically get easier, trials don't go away, but somehow, when I feel all is lost, I manage to make it through. I remeber growing up and we had family friends with a special needs child. I remember my parents always saying that she had such a sweet spirit. I didn't understand it when I was younger and as I grew I remember asking my parents why these children have to suffer. The answer I received was odd to me and I am still trying to understand all aspects of it. But my parents reminded me that it is all part of Heavenly Fathers plan. The Plan of Salvation. That we came to earth to face trials and make choices in order to have the opportunitly to return to Heavenly Father. When I first heard this explanation I thought my parents were odd, as they would say: what did that have to do with the price of tea in China? But then they went on to clarify that first when Adam and Eve were sent out of the Garden of Eden, along with it came all the diseases and trials of the world. One cannot progress and grow very much without tribulation. But then I remember my mother and a few other different mothers when I was younger telling me that these special children give other people the opportunity to grow, to love and to become better people. That is why you can always feel such strong sweet spirits when you are around them. We all chose to come to earth. We all knew we would face trials and tribulations...but I can just imagine that Heavenly Father knew there was so much more in store than we could ever imagine. That the world and satan would become so stong that he would need strong spirits to help guide people through. I imagine that one day he asked these sweet spirits into a room and told them that he had some very hard work for them, work that wouldn't be fair, and work that would be painful and hard, and these AMAZING spirits volunteered to come to earth and face these trials in order to help people grow and use their free agency to have the opportunity to return to Heavenly Father. I remember Abinadi's blessing after he was born, and I remember hearing the words clearly that he would be an example to his sister and his other siblings. I remember feeling the spirit so stongly at that moment, testifying to me the truth of that statement. I assumed it meant he would be a good missionary and a strong leader, but as time has gone on and he has gotten sicker and sicker, in subsequent blessings the spirit has reminded me of that blessing and confirmed to me that I know now that this is what that blessing meant. That my beautiful little boy is such a strong sweet spirit and will face many trials and pain in his life and yet through all that pain and trials he will still be an example to his siblings. He will be and is one of those sweet spirits. I know that it is so easy to get lost in those moments of pain, fear, anxiety, and hate, to give up faith that there is a Heavenly Father who loves us and watches over us. But I want to tell you to NOT loose your faith! Life is hard, life is devestating, and there is someone there waiting to help us through it! Our Heavenly Father loves us just as strongly and intensly and unconditionally as we love our own children! That feeling you feel for your own child, is exactly what he feels for us. And just as in our own lives with our own children we cannot take away every pain, every trial and every difficult learning experience, our Heavenly Father feels the same about us. While he wants to with all his heart to make our lives perfect for us he knows we must endure. But he had to help us so he sent us his only begotten son, our Saviour Jesus Christ, and he watched him suffer and die for us so that we could return to live with him again. So no matter what sorrow we feel, our Heavenly Father knows! And not only did Our Savior take upon him our sins, but also our ailments so that he could better understand how to help us. So I ask you in these hard times to not turn away from the 2 people who trully know you and your trials. Heavenly Father Loves us and wants to be that support that we desperately need! I may never in this life truly understand why. I may never be able to stop that feeling of frustration as to why my innocent children have to suffer. But I do know that in these times of pain and tribulation my faith has grown because I have seen countless blessings and have personally felt my Heavenly Father's love, and those times when my Savior has carried me through this life! I know my savior lives and loves me and wants me to return to live with him again. I know that I may not understand why Heavenly Father cannot take away my childrens pain and disease, but I WILL NOT let satan win because of that! I will look for the blessings in my everyday life, I will strive to learn the lessons my Heavenly Father needs me to learn, and I will be the best mother I can be to these AMAZING spirits that Heavenly Father has trusted me with. Because most of all THEY deserve to have the best life possible and return to Heavenly Father again. I say these things in the name of Jesus Christ, Amen


Kaelynn said...

Sorry, couldn't figure out why the paragraph spaces wouldn't work.

Jim, Becky, and Kids said...

Thanks for sharing this Kaelynn. I hope you aren't tired of getting comments from me; I really appreciate your blog. I hope the g-tube helps Abinadi if you go that route!

Kaelynn said...

Becky, I love getting your comments! Please don't stop. It's always great to hear from friends. :-) I'm really hoping the g-tube helps, I just want my boy to have the life he deserves.