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, October 27, 2011

Oh the " talks" we have!

Had another rough night with Abinadi and Enoch. Enoch because I've learned he's a troublemaker and there is no where safe in the house that he can't figure out how to get to and he stole some Wendy's fries. Abinadi because he's having to take meds for a UTI that has ingredients he's allergic to. So after it taking awhile for me to realize that the "voices" in my head were NOT part of a dream, I realized it was Abinadi crying for Mommy to get him Mater. Yup! That's my boy! Can't sleep cuz his tummy's hurting again so he wants his Mater to play with. Needless to say after everyone in the house had been woken up, we had to have a long talk about the proper protocol for when we have tummy aches and can't sleep... and sorry but yelling for Mommy to find your favorite toy isn't one of them!

Then later the next day as I'm trying to convince Abinadi to drink his formula he tells me he can't cuz his tummy hurts, then he all cutely walks up to me twiddling all his fingers together and tells me in his I have an awesome secret voice, "Mommy, my tummy feels like this ( looking at his twiddling fingers) and I can HEAR it!"

Ok well I guess you probably had to be there to grasp the level of "cuteness" so you'll just have to trust me when I say it was adorable! :-)

Monday, October 24, 2011

Not only have you not walked a mile in my shoes, but you haven't even looked down to notice what type of shoes they are!

(Once again, those seeing this on Uriah's facebook, this is written by Kaelynn for her blog)

Maybe I'm crazy but I trully don't believe people have the right to judge me. We have had a terrible month and it's not getting better. 
And when I need to be sitting here pondering and striving hard to have the spirit with me so I can know the right decisions to make as to if my son needs a feeding tube, and when is the right time. And also what are the right accomodations to fight for for my daughter's safetey in school, and I could go on with this list of the questions we are desperately trying to receive answers to, I am instead sitting here and the only thing going through my mind are the comments that have been made and the obvious judgment people have of me.

And the worse part is that these people judging me have never ONCE talked to me about my life, or the real situation. They take no interest in the day to day, or what is trully going on, yet they feel the need to judge me for decisions I've made without knowing the how, why, when, where, and any other pertinent information. I'm sorry but you don't have the right to judge me.
Not only have you not walked a mile in my shoes, but you haven't even looked down to notice what type of shoes they are!

I just wish people would realize that their opinions can be hurtful, and if not being sought after, should be left unsaid...I need to let this go, I need to clear my mind and get rid of the anger and pain and frustration and hurt and contention so that I can  invite the spirit back into my heart and get back to more pressing important matters. So while I want to dwell on this and resolve it, I can't. I have to let it go. I have to forgive and move forward so that my children can have my full attention. I've already wasted a day of my precious time on this stupidity, and I can't waste any more.

...but I will add this, just because I forgive and move forward, doesn't mean I haven't learned from this experience, and things and relationships will never be the same.

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

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.

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!

Thursday, August 25, 2011

Let's Face It

So let's face it...my life is depressing. I know that. I live it everyday. I have many days where I can't keep myself from crying because of all of it. I vent too much, yet I keep too much still hidden and it's making me crazy. I see what I tell people and I think, "No wonder people don't want to talk to me, or keep in touch." but then the other side of me thinks, "Well, better to know now who cares and who doesn't." This has been an eye opener for me to see the true colors of people, and it is always surprising.

The speakers in church last Sunday were talking about counting your blessings. (At least I think that's what they were talking about. I was having a hard time listening because of my kids) I know it's what I need to do right now, but I am struggling to appreciate the blessings through all the trials. I know they are there, I can start listing them off and have a hard time stopping. But for every blessing that I feel and know, there is another trial knocking me over. So how do I appreciate all the blessings when I'm drownding in trials?

I began this journy promising myself that I would not teach my children to hate this disease. That may be an odd thing to say, but I've met people online and all they could talk about was how much they HATE Eos. And I decided that I would never be that way. I wanted my children to have a positive outlook on life, to see all the blessings they have...yet I find myself everyday struggling not to scream out loud, "I HATE THIS DISEASE!" I hate it, I started hating it the moment I had to lay on the floor for hours one day squirting little sips of this NASTY formula into Abinadi's mouth every couple of minutes so that he wouldn't end up in the hospital again. I HATE it everytime I look into my boys' eyes and see them pining over food. I HATE it when I realize my house is a mess because I can't handle the stress of it all, and all I can think is, "well if my kids were normal, I would have it together." And I can go on and on with multiple times every day where all I feel is HATE towards this stupid disease!

It is SO HARD to appreciate the blessings when all you feel is hate. I am trying hard to keep my kids from feeling that hate. But I know they do. I can see it in their eyes when problems arise. And all I can do is tell them, "I know how you feel. I hate it too. But we gotta keep goin' and we just have to deal." So I guess I'm dealing. It may not seem like it. And it surely tonight doesn't feel like it, but letting it all out, is helping me deal. Admitting to myself my true feelings will hopefully help me move past them, and appreciate the blessings we have.

Saturday, August 20, 2011

Advice I Need to Say Out Loud, Even if No One Cares to Listen.

You know when you were a kid and you CONSTANTLY teased or picked on your sibling? You'd make fun of them, and often say mean things. But the moment someone else picked on them, you were the first to say that's not ok?

Well, word of advice to anyone willing to listen. It's the same issue with a chronic disease or illness. I try to see the positive side, and make jokes, just to get through the day. It's ok when I start the jokes. But when someone else comes up and starts making jokes. It's hurtful and feels as if they're dismissing all the trials we have to face. So word to the wise, don't try to make light of it with jokes like, "Well at least it makes grocery shopping easy!" or "Ahh man, I wish I didn't ever have to cook!" Unless you've lived it don't comment. Because you'll probably just end up hurting feelings, and because I would switch places with you in a heartbeat. So don't make me feel worse with the reminder that I can't.

Friday, August 19, 2011

With a Chronic Disease You're Chornically Forgotten

Just as the title sounds, that's how it feels. So just think of someone you know who's child or themselves that is battling something life changing, and stop and ask them how they're doing. Listen to them vent, be a shoulder to cry on, do a little service. Because I can tell you from personally experience they need it! No matter how well they look, or put together, or strong they seem. It's a daily stuggle that never ends, so please don't end the kindness.

Thursday, August 18, 2011

Feeling Quit Left Out

You know that pain you felt when you were a little child and got left out of a game or slumber party? Well I can tell you from personal experience, in a similar situation, even as an adult, it still hurts.

When you have food allergies, especially when you have children with food allergies you face so many situations where you are left out because you can’t have the food. It happens daily in a child’s life. It’s hard but you learn to survive because you have to. The hard part comes when you find situations where it’s just not safe to attend. People don’t realize that food gets EVERYWHERE! And how easy it is for a child to touch a toy, or a table or another child and then the food allergic child then stick their hand or that toy in their mouth and they are then sick. We are SO blessed that our children do not have anaphylactic food allergies. I thank Heavenly Father everyday for that blessing, but it still doesn’t diminish the fact that my children will get sick if they come into contact and accidentally ingest or are covered with a known food allergen. And every place we go we have to weigh the risks of whether or not it is safe enough for us to attend. I don’t feel bad about that. It’s our life, it comes with the territory.

But I’ve been having a hard few days. Uriah’s gone with the military again for the next couple weeks and I just need some socialization. You’d think I’d be all set. The ward is having a young family activity…the only problem, it’s an ice cream social. And in the safety world of food allergies, that’s a big no no for little toddlers who can’t keep their hands to themselves. I don’t have any bad feelings towards the people planning it. I’m certain the thought never entered their minds that it automatically excludes us. But the pain is still real, and it still hurts being left out.

It’s hard enough knowing how often we don’t get invited places and my only guess is because the hosts don’t feel comfortable with our situation, but to add on that we CAN’T attend something is just as hard. Why do we as Americans are not capable of having fun without food being the focal point? It’s not fair and it’s painful being the one left out….just saying.

I just wish out of all these people who know us and know our situation, someone would have thought that maybe it’d be nice to plan something everyone can do.

First trial of Bananas

Well almost 3 months of elemental and we're now trying to find "safe" food for Abinadi to eat. (We're going to go at least another couple weeks if not more before we start reintroducing food to Enoch) We first started with Smarties candies. A food many Eos kids find safe because it's all artificial and broken down forms of food, but nevertheless Abinadi started refusing his formula instantly and we had to stop it. Then it was strait sugar to make certain he doesn't have a sugar intolerance, but he didn't like it well enough to eat enough to make a true judgement but he seems fine on small amounts of it. For those of you who don't know, you build a safe diet by taking ONE food, and only one food and trialing it for AT LEAST 2 weeks. More if you question symptoms, or some doctors expect longer for different foods or to scope between trials. The drs here in AK are VERY conservative when it comes to scoping and refuse to scope younger children, and mostly will refuse to do a scope any sooner than a year apart. I'll be curious to see what different treatment we get in CO. You must eat the food everyday for those 2 weeks, and if no symptoms YEAH! You have another safe food to eat. If symptoms arise you pull it and wait for the body to recover before starting a new trial.

So that leads us now to our first official food trial. We chose bananas because they were a food he used to love. First bites not so good. He cried that they were YUCKY, and it was obvious that he didn't remember how to chew or use his tongue, and he didn't like the texture. A common problem that arises from being entirely elemental and not using those muscles. But we continued on and with coaching from me we've been able to get 1-3 bites of banana in him daily. I want to get more than that but he just cries that he doesn't want it. He will need feeding therapy but we need to get at least some safe food for him first.

I'm afraid he's going to fail bananas though. No obvious allergy signs to bananas, but little problems have started creeping up. He's not sleeping well, he has more saliva, is coughing again and it's increasing everyday. All signs that his reflux is getting worse. But that all could just be because his body is readjusting to having food again. Or that his seasonal allergies or asthma is bothering him. All things that suggest that we have to push through and see what happens.

I hate this waiting game! I hate just waiting for the day that he starts vomiting, stops drinking and everything goes downhill. I feel like I'm a terrible person just waiting for that day, but we have to be certain. To make matters worse he's started getting violent today. You may not think that's anything but when you watch your child battle with a disease daily, you start to notice and learn there are emotional signs and symptoms that show up, and who can blame them? You'd be emotional too if you constantly felt ill.

I'm probably going to extend the 2 weeks to be certain the bananas are safe if no other symptoms arise, but I feel like my life has become a detective novel and I am obsessed with watching and looking for any clues or problems that might or are arising. It's tiring! *SIGH*

Here are my 2 elemental boys during snack time after a hard day of play. This shouldn't be ANY child's snack time. :o(

UPDATE: Bananas were a fail. It took almost 2 weeks to have diffinitive obvious symptoms to make me pull the food, and sadly even though he's been off the food for almost a week now his symptoms kept getting worse. Now I know why I was never able to pinpoint which foods caused the problems.