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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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Sunday, March 3, 2013

Off to a great start in Atlanta and John meets Von Grey

What a crazy, exciting, stressful couple of weeks we've had!!

First off, we've decided to push back the Marcus feeding therapy until John has some more safe foods. That took a HUGE amount of stress off my shoulders. I had been scrambling to change Dr appointments, arrange holding our spot in local occupational therapy, and trying to find a short term, preferably furnished, home or apartment for myself and John near the Marcus Center. I was a wreck and it just didn't feel right. 
If I've learned anything from everything we've been through with John it's to trust my instinct. If something pertaining to John's care feels wrong, it probably is. That's the way it's worked out in the past so I'm going just keep sticking to that. 
The Marcus Center agreed that it would be more beneficial to us to wait until John has 5-8 foods and ideally those will be 2 from every food group. So they are going to work with me to find a local feeding therapist who can help us work through the difficulties John has with trying new foods, until we have a few more foods.

We had been trialing bananas and it wasn't going so well. John was totally refusing to eat them with a spoon (just like he did in the begining with the sweet potatoes) so I started putting 2oz of bananas in a 6oz bottle once a day. He did okay with that for about 2-3 days. At that point he would take one drink of the banana bottle and then refuse anymore until I gave him a new bottle with out bananas in it. I tried reducing the amount that was in each bottle but he still refuses. After talking to Dr. L's nurse about what was going on we decided that it was a better idea to stop bananas. It seems like maybe they are making him hurt and that's why he's refusing so strongly. 
So onto another food.
We tried one bite of chicken and that didn't go well, so we tried a bite of apricots with sweet potatoes and it was really really sour so that didn't go well. 
I started to get really frustrated because I don't want to force feed my child or torture him with foods he hates just to see if he's going to have a reaction to them or not. That's why I dropped those two after the first bite was so strongly rejected. There were tears involved with the chicken :(
After talking with Dr. L's nurse again she told me that we could do 2oz of a food a day for 5 days or a few bites a day for 10 days. I was thrilled!! We could totally do a few bites a day for 10 days!!
We decided to try a few bites of turkey mixed into a jar of sweet potatoes for 10 days, if he doesn't have any obvious reactions then we will start adding more turkey and reducing the amount of sweet potatoes along with adding another food. 
It's looking like we might have two safe foods now and they go great together!!


So far the turkey is going really well!! He's not super excited about it but he doesn't fight it as much and so far there is no tears, no gagging, no coughing, and no vomiting!! It's only been three days but we are off to a good start and I'm VERY excited, but not as excited as Doug that his boy is eating meat!
I hope to add a fruit next but we'll see. He seems to like veggies better (like his Momma).

Von Grey wrote a song for the SEED Center and John got to be a part of a music video they made for the SEED Center. We drove out to Atlanta for the day and John got to watch them sing and sit on their lap for a picture that will be autographed and sent to us!

 I really enjoyed meeting and talking to some other EoE Moms and John had blast playing around the Zone at the children's hospital.
After we were done with the video we made a surprise visit to our favorite cousin's house.
It even snowed while we were in Atlanta!!

It was a long day but a good one.

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