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, 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.

Why I'm so Passionate About Eos

So if you've read my other posts, you know that we don't have anything official. But here is why I'm passionate about Eos. Because when it comes down to it, these amazing mothers have been the BEST and sometimes the only support we've had through all of this crazyness, and with trying to get our boys healthy. And looking at things in the long term perspective the only way we will eventually find answers and better treatment options is if Eosiniphilic diseases are reasearched more and find more treatment options giving us more information.