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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Monday, August 26, 2013

Try to Imagine

Try to imagine...

Imagine that the one thing that's supposed to sustain your child, nourish your child, keep your child alive, is attacking your child, making your child ill, killing your child. 

What would you do?

Imagine now, that the only thing that can your child can safely eat is a hypo-allergenic amino acid based formula that doesn't taste all that great, smells horrid, and has nothing natural in it.
How would you feel?

Less than a day's worth of formula for John. 18oz of water and 2 cups of formula.

Now imagine that the only way to find foods that might not make your child sick is to make him eat it.
Knowing that there is a possibility that it could make him sick. That he could have symptoms of reflux to throwing up, to incredible pain for days. Just from a few bites of a food.

Imagine that you might need to give your child a medication in a way that's not FDA approved just to boost his chances that these foods that you are feeding him won't be rejected by his body.
Would you do it?


What if you were faced with the choice of seeing your child struggle to drink this formula all day every day or having a feeding tube put in?
What would you do?

Imagine if you had to agree to letting doctors put your child under general anesthesia every 3-6 months because there is no other way to know for sure if the foods you've been making your child eat are really safe or not.
How would you handle that?



Imagine if you had to experiment with your child and his health on a daily basis.

Imagine if all of this has caused your child to fear food. To have an aversion so strong to foods that he cannot tolerate the feeling of it in his mouth. To see your child cry and gag every single time you try to get him to eat a solid piece of food.
Imagine that getting your child to eat is a daily struggle for both of you.

Imagine knowing that there is a possibility that your child will never have more than a handful of safe foods for his entire life. Imagine that your child's "safe" foods could become unsafe at any moment and therefore he will have to continue with this routine of trials and scopes for the rest of his life.

Imagine that this is YOUR child, YOUR child's life, YOUR life.

Just try to imagine.


This is my child's life. This is my life. 
Whenever I start to feel depressed or angry I look at my child. He, who has every right to be upset, angry, miserable.
He is HAPPY!


I look at him smiling and laughing all the time! 
He is the happiest, most joy filled child I have ever encountered. 



He amazes me every.single.day.
I think we could all learn something from him.
I know I have.



6 comments:

  1. It is so easy to look at John and see nothing but happy. Yet, when meal time rolls around and he doesn't get fed like others, you realize something is extremely different. Love the post, it's spot on with showing what you all go through but the wonderful reason why each challenge is more than worth it.

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  2. I never thought I could love another child as much as I love my own. . . and then there was John. He is such an incredible little boy filled with so much love and joy. I am so thankful that he is in our family and teaches us all so much about how to love big and make memories without food. Love you guys all so much! Auntie Amber ;-)

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  3. My son has EOS too. It is amazing how these wonderful kids can be so strong, brave, hopefull and filled with love and joy!!! My son is the family jokester, his goal in life is to make others laugh! =) He is such a blessing, I can NOT believe God blessed ME with HIM!!!! =) Keep strong and give your worries & your son to God, all will be well!

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  4. Thank you for a glimpse into what you both, and now Christine, go through. I knew it was rough but you really detailed it perfectly. I only had to have Doug avoid one food. I had it easy. You are an inspiration to parents everywhere, Doug and Margie. From Grandma Hemme

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  5. Hi, my son was recently diagnosed with EoE and they want to admit him to Children's National in DC and put him on the elemental diet with an NG tube. Hes 19 months old and is 19 lbs and 31.5" tall. How old is John? Thank you for writing your blog, it helps to read another similar experience.

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  6. Jessica, my son is 2.5 and was diagnosed at 11 months. They've tried to put an NG in him twice and I've held off and john's proven that he can drink the formula. As long as he keeps drinking it by mouth we won't need a tube. Good luck to you

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