Surviving EoE

Thein's journey with a rare disease


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The House of Vomit & Poo… Jealous??

I cannot speak highly enough of the company Biokleen!!  They make a product called Bac-Out Stain and Oder Eliminator.  I am not receiving anything from the company for promoting their product. 🙂  Their product is a green cleaner made with a unique blend of live enzyme-producing cultures, citrus extracts and essential oils that eliminates the toughest stains and odors and prevents their return.  👍  It is the only product I have been able to find that completely eradicates the awful and dreaded vomit smell!  If you are a parent of an EoE kiddo, then you completely understand my excitement.  We have been using their products for a few years now and have never had a problem or reaction.  The Bac-Out comes in a foaming spray or bottle and is full concentrate.  You can add it to the laundry or even on carpet.  It’s great for pet accidents as well!

I am mentioning this because as with any EoE or tube fed child, you will be dealing with one or a combo of elements…  It’s just the way of life around here. 😳  Only our house would have a window open and a fan blowing the air outside, during our recent record low temps.  So, if you have been one of the lucky one’s to witness this… No, I have not lost my mind; just wishing my sense of smell would take a vaca!! 😝


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Thein,

You have endured so much pain and discomfort, but still walk around with a smile.   The amount of compassion and empathy you have for others is well beyond your years.  You have a unique gift and I hope you hold it near and dear to your heart.  You amaze me everyday.

Your brothers care and worry about you so much, especially when a surgery is near.  Your older brother informed me, that if anyone messed with your tubie; he was going to karate chop them in the throat.   Although I do not approve of this violence 😁, coming from an eight year old that loves martial arts… It shows how much he adores you.  Even though your younger brother may pull your hair and steal your toys, he is the first to run to your aid when you get hurt.  He will give you hugs so tight that, in some way, help you calm down.

Your father and I are so blessed to have you in our lives.  We know what a long road you have ahead of you in order to fight this awful disease.  So when you are feeling down, know that we will be right beside you as long as you need (and your brothers as wingmen).  You will not fight this alone.

“OOO… Snuggle puppy of mine.

Everything about you is especially fine!

I love what you are.  I love what you do.

 OOOOoooo.  I LOVE YOU!!”   ~Sandra Boynton

Love, Mom

P.S. The picture is post feeding tube surgery.  Your brothers face timed you everyday to say good night.😊

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Constantly Questioning Decisions ?????

So, there has been a lot of change in the past 4 or so months… Thein had a horrid scope at our CCED initial visit (the 4 day one). His count was the same or slightly higher than his previous one, at which point we started the elimination diet. I knew it was going to be high, but not that high. They ran his blood and come to find out he is allergic to beef, rice, corn and potato (a food trial that went south quickly). His diet, at that point, mostly consisted of Hormel Pepperonis, veggie straws, grass fed organic meatballs, rice and NeocateJr.

Who would have guessed that after eliminating the top 8 allergens, your child would be just allergic to the foods left. Well if you know this disease, then you know that it can cause their poor little bodies to be “allergic” to just about everything. I used my infamous “” because most are really food sensitivities. Figuring out the allergens and the sensitivities… Now that’s the hard part.

We started the elemental diet (medical grade formula only diet, yum!) mid-July and three months later his scope came back at 3 eosinophils! 😃  Starting the formula only diet was really rough the first week, but then he started to feel better. Each week the begging for food decreased. He will still ask from time to time, but his new thing is asking to smell your food.  It brings everyone to tears and rips my heart out every time. I have recently started forewarning people because I would prefer Thein to not witnessing the all the sobbing. Sam & I just let him sniff away and then cry about it later. It is extremely hard not to get choked up as this sweet little face is staring up at you (that’s when you make the “I got to pee” dash to the restroom).

So, it was around September when I finally came out of the closet (really it was the restroom where I was sneak eating). Wow, was that hard. He’s little sniffer must be in overdrive because he came barreling out to the kitchen, “Mommy! What’s that smell?!”  Slowly, I added a snack back during the day and made sure I was just close enough that he knew I was eating. Some of you make think that was mean of me to do, but he will have to face this sooner than later. I wanted to ease his exposure to someone eating in front of him slowly, rather than him be bombarded with all the smells and feelings all at once. He did really well with this approach, so we stuck to it.

Then came dinner time… This was another challenge. Having dinner as a family has always been very important to me. It was a time we were forced to stop what we were doing and come together to talk about whatever and that’s what I loved (we have some pretty memories made… for example, the no dating until you have hairy pits convo 😜). I was stuck. Do I make Thein sit w/ us, watch one of his programs in the same room, or go play? Me being me, the going off and playing idea was out the window. He is still a part of our family and should be included in our family time. So, we opted to allow him to sit in the brown chair in our kitchen, which has really high arms so his younger brother (19 months apart) couldn’t see Thein’s sucker. Sometimes he will come to the dinner table with his sniffer in full force and other times he could care less.

Then came the spaghetti and meatballs night… Knowing Thein’s love for meatballs made me put off making it, but it’s also my 2 other boys favorites as well. Just another decisions you question later if it was the right one. I have come to find out with Eosinophilic Esophagitis (as well as a lot of other things) questioning if you made the right decision is constant! He so young and doesn’t understand enough of EoE yet.  So, back to the meatball night.  As soon as he saw the meatballs, his eyes lit up. He was so excited.  Sam and I were crushed.  It was too soon.  Sam nor I could bring ourselves to eat.  Sam just sat at the table while the other 2 boys devoured their food and Thein was belly up in front of my plate sniffing and drooling.
While all this was going down, my tears are flowing into the sink with my attempt to clean pots. Then walks in my savior, Misty. Our neighbor came to see if Thein wanted to come out and play. I think she took one look at me and knew something was up. I haven’t been able to make speg. & meatballs since.

Needless to say, I’m not looking forward to the holidays.  Especially since he will be getting his g-tube Dec 16th.

IMG_6611.JPGLook at that sweet face, sitting in the brown chair I referred to.  That monster costume is size 6-12 months and he is 3 1/2yrs old.  The costume is on the small side, but there is no way he should be able to fit into 6-12M at that age.  I cannot wait until he gets his feeding tube and starts to grow!  We will be having a 30lbs party when he gets there, for sure!  Hopefully that happens soon 😀.


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Some People Deserve a Good Slap!

The 2 worst comments ever said to me was… Brace yourself.

1. “Thein is the complete opposite of me. I was born really healthy and he was not.” Then he laughed and walked away, leaving me as I put my jaw back where it belongs.

2. Me: “Switching Thein to the elemental diet, which means he can only drink a medical grade formula and absolutely NO FOOD, was the hardest thing we have ever had to go through.”

Un-named woman: “Oh, I know! It’s so hard for me to say no to dessert if my child doesn’t eat his/her dinner. I can totally relate!!”

Umm, no and I suggest that they run before I blow a gasket.


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CCED Here We Come

We will be heading to CCED very soon…  We have so many mixed emotions.  Thein has no idea what is about to happen.  He has really bad anxiety about doctors/hospitals and sleeping away from home, which is why I haven’t made a huge deal about our visit.  Luckily, my mother-in-law is keeping our oldest (7), but we will have our youngest (1) with us.  Hopefully we can make it to the Newport Aquarium, and IKEA.  👍  We will be there July 7th-10th if anyone is there the same time!  I would love to meet other families like ours. 😀

Happy 3rd Birthday Thein!

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Happy 3rd Birthday Thein!

Thein, recently, had his third birthday 🙂 When my husband, Sam, asked him what he wanted, he yelled, “CAKE!!!” We both looked at each other, like we were slapped in the face. He wants cake, so we gave him cake. We bought gluten-free rice krispies, earth balance soy/dairy-free butter, and marshmallows. Thanks to my awesome husband, he made the giant rice krispy treat look like a cake. Thein was elated! BTW, that butter makes the BEST rice krispy treats, ever! Thein is luck to have a best bud, who’s birthday is the day after his. These pictures are from a birthday celebration dinner.


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The nightly cooler

I can’t believe that Thein’s awareness event is this weekend!! I have so much to do… I hope some EoE families show up. It will be nice to talk to people who actually get it and not say, “he looks healthy!” Well, he’s not. His pain is the worst kind, the kind you can’t see. My husband and I have felt like people think we are over reacting. Come stay the night with us! I have to pack a cooler of formula for the night because he’s up every two hours. He’s up because of pain & hunger. I hate that I can’t make the pain go away. Sam and I have very few well slept nights and it’s ok. What isn’t ok is why we are not sleeping.

This disease is devastating. It effects everything and everyone, in our family. Sadly, it’s being diagnosed more frequently even with it being a rare disease. My wish is that any new family receiving this horrendous diagnosis finds a support person/group. It’s nice to know there are others experiencing the same.

I hope to see some new faces this Saturday!!

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