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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, September 18, 2013

in the loop

Just a quick update to keep everyone in the loop.

We were supposed to scope Monday for chicken, peaches, carrots, and squash but John started to throw up a lot. I thought it was just a bug or maybe sinus drainage making him throw up but he never had a fever and only threw up after eating squash.
We had also introduced some new things that are supposed to be safe for kids on an elemental diet like grape koolaid and dumdums (again).
I talked to Dr. L and he agreed that it sounded like John as having a reaction to something.
Since we added the koolaid, the suckers and the squash all around the same time it's hard to tell which one is causing the vomiting. 
Either way we've stopped all of them and Dr. L agreed that since he's having these symptoms he is more than likely having a flare and putting him under sedation to do a scope would be pointless.
We will schedule a scope for a month out from when John stops having vomiting episodes.
We decided to up John's steroid to twice a day since we've been having such a hard time finding four more foods. We are down to three foods for this scope and plan to keep it that way. 

John started feeding therapy with a new therapist that specializes in feeding (FINALLY!) and he's doing so well! He is also working with a new physical therapist that he LOVES!
We are all adjusting well to the new house and new routine. 
I started taking a sign language class and am teaching John and Doug and John is picking up on it so quickly.
It's adorable watching him try to fingerspell his name.
He makes me so proud and so often I find myself looking at him and unable to believe that he's really mine.



3 comments:

  1. Thanks for the update. Love the picture above. So glad we were able to visit last weekend. I will always remember you went to Goat Days with me the first time. Mom Hemme

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  2. Thank you very much for sharing! You are an insparation for us. My very happy 20 month old is fully elemntal still. Every trial is painful, vomits, coffee-ground vomits, reflux-like symptoms, sleepless nights and super-cranky days... You give us hope and a feeling "someone out there" is coping with issues similar to ours. How do you manage tooth-brushing? Thank you and may healthy peaceful days arrive soon! Noa

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    1. Tooth brushing was a challenge for a long time. He tolerates it now with his safe toothpaste (What a hassle to find that!!!) I think he enjoys the taste of the toothpaste enough to tolerate the brushing. Thanks for commenting!!

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