About Me

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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.

Thursday, August 22, 2013

Long Overdue Update

What a crazy, whirlwind of a summer we had here at the Hemme Haven. I'm really regretting now not taking the time to keep the blog updated but I also thoroughly enjoyed the experiences and memories we made as a family over the last two months.
Last I updated we were doing a challenge to eat like John for a meal or a day or a week to raise awareness for EoE. I don't know how you all did but Doug and I found it VERY difficult and did not do well. I found out during the process that my body cannot tolerate a lot of turkey. I was miserable with the worst heartburn and reflux that I've ever experienced in my life. I subbed his formula with a protein shake and ate a lot of sweet potato fries and green beans. I only lasted a day and a half of the week I wanted to try for. 

The foods we've trialed since I updated last are white rice, brown rice, white potato, apples (again), carrots, peaches, chicken, and we start peas tomorrow.
White rice and white potato resulted in him refusing to eat them and he also started to act as if he couldn't get comfortable. All day long he was irritable, clingy, and seemed just miserable. He didn't want to be held but he didn't want me to set him down either. He didn't want to sit down but he didn't want to stand or walk around either. He couldn't sleep and everything seemed to frustrate him to no end. He also cut way back on the amount of formula he was drinking in the day.

Apples ended up being worse this time around that last time. We thought he was pretty border line with apples when we trialed them without steroids and with the steroid on board we thought John would have a good chance of passing it this time around but around day two or three of the trial he started throwing up.
Brown rice was by far the worst we've had in a long time. Three minutes after taking the first five bites he was violently vomiting. 
Carrots and chicken are two that he doesn't enjoy and in fact he totally refuses the chicken the same as he does the turkey but we are hoping to get enough into him right before his scope just to see if they are safe before we start pushing them on him too much. Why waste time getting him to like or tolerate a food that may not be safe anyway, right? Carrots he will tolerate somewhat if he's in the mood for them but he's not been acting like himself lately and has a bit more reflux lately so I have a bad feeling that they will not be a passing food but we are going to stick it out and see what the numbers say since they aren't making him vomit or break out in any rashes or anything definitive of a reaction.
Peaches, so far, is the only food trial that's going well and that he LOVES. 
So this upcoming scope in September will be for peaches, carrots, chicken, and (we hope) peas.

 One of the things I focused on a lot this summer was making lots of memories that weren't food oriented so we spend a lot of time outside playing with sidewalk chalk, a water table, and a kiddie swimming pool.

We also took a road trip over the 4th of July holiday to pick up John's cousin Christine who visited last summer. This time she came to stay. We are so happy to say that she has moved in with us and if finishing her last year of highschool here in the states instead of going back to Canada. 

We drove the whole way up to Ontario with a uhaul trailer and made a stop in Niagara Falls on the way back home. He had missed his cousin and was so happy to see her again.

John did really well on the 2,000+ mile trip made in 3 days.

Now that we are all home, unpacked, settled in, enrolled and registered for school and getting somewhat into a routine again things are calming down. It was pretty crazy there for a while. I feel like I've mostly caught everyone up on what we did over the summer and in my next post (I hope to write it up tomorrow) I will go into more about what our next steps are and where John is in his progress with diet, and his therapies.