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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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Wednesday, August 1, 2012

Two Steps Forward, One Step Back.

What a crazy few weeks it has been here at the Hemme Haven!!

We had a great time in Greenville, despite the reason we were there.

We got a hotel since we had to be there on Wednesday morning and Thursday morning.

We spent some time relaxing after John's check up Wednesday morning,
then we headed out to Table Rock to swim in a little water fall.
The water was coooold but everyone had a good time.

We also got to meet up with our friends for dinner while we were there which was so nice. It was great to visit and see John and Emily play together.

Thursday morning came way too soon and we had to head to the hospital so they could put John to sleep for the 4th time in his less than two years. I was really nervous again because so far he has woken up with emergence delirium two out of three times! I did NOT want to experience that again. We talked to the anesthesiologist before they took him and told him our experiences and concerns and he was very nice and understanding about it all. He said they would do everything they could to make sure he came out easy, like the first time he was there at Greenville Children's.
We were brought back before he woke up this time, which was nice, and he did GREAT! Just like our last time there. He was a little fussy, which is understandable and expected, but he did not fight it and he did not scream and thrash.

We packed everyone (Our niece Christine, our dogs, and all our stuff) and headed back to Augusta.

John got to ride on the luggage cart

I got a call on Monday that they had the results of the biopsy back.

John has a surprisingly high count of eosinophils and significant inflammation.
It's surprising because he has been elemental for a month!

Dr. M. called in a steroid called prednisone that John will take for a week. That should put him back into remission and once he's had time to recoup we will consider starting another food trial.

It's disappointing and discouraging knowing that this could happen every time we try a new food. It feels like I am making my son sick and it's a horrible feeling knowing that I'm doing this to him and I can do nothing to make him feel better. For now, this is the only way to know what foods are safe for him. Hopefully one day, they will come up with a better way, or even better, a cure for this horrible disease!

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