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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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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.

1 comment:

  1. From Grandma Hemme: Thanks for the update.