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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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Tuesday, March 26, 2013

Turkey, green beans, and plums, OH MY!!

Spring must be our time of the year for amazing things happening! 

I believe we are well on our way to having FOUR safe foods!!
It's really too early to tell but John did so well in therapy today that I cannot help but be excited.
Let me start from where I left off last time I updated.

John has been doing SO WELL with the green bean trial, eating a WHOLE JAR every day and showing no signs or symptoms of having any reactions to them. Because of this, and his scope coming up on the 8th, I decided to go ahead with another food a little early (4 days to be exact) just to make sure that it counts on this scope. I chose plums because we don't have any fruits yet, they are smooth, sweet, a different color from what he has and quite honestly because I'm worried that the turkey might be constipating John. Sorry for the TMI. I want a natural alternative to handling his irregularity. I don't care for Miralax or Lactulose.

As well as John did with green beans for the first time, John did even better with prunes!
Let me side track for a second... Yes, I just said we were going to trial plums, then I said he did well with prunes. For those of you who don't know prunes are dried plums.
I tried making some plum baby food last night, because it's practically impossible to find already made in single ingredients, but that didn't work out so well. It was very runny and could be slurped up in a straw easily. Not so good for my orally defensive child. So I bought Earth's Best prunes. 

John ate an entire 2oz jar no problem!! 
Not only that, but Ms. C actually managed to get him to eat a few bites of watered down turkey. That's turkey alone... not mixed with green beans or sweet potatoes!

In other, somewhat related news, we are moving!
We found a new rental house in South Carolina. It's less than half an hour from this house so nothing will change except our address. :) John will still see all the same doctors, Doug will still be working at the same place, our insurance and everything will stay the same. 
It's going to be hectic and crazy and I really hope it doesn't effect John's progress but we shall see and handle each thing has it comes. 
I can hardly wait for his scope in two weeks so we will be able to officially say that John has 


We are so very excited.

Thanks for reading!

Wednesday, March 20, 2013

Green Beans

Yesterday we started the green bean trial. John has to eat at least 3 bites of green beans every day for the next 10 days while also continuing to get at least 3 bites of turkey. 
He has to have both of these foods in his system when they take biopsies on April 8th. It seems like it will start to get harder the more foods we trial in between scopes. 
Not only because the results could potentially be confusing but making sure he eats enough of each food every day gets harder the more we add. 

I was ready for another battle with the green beans but decided to see what he would do with green beans alone and not mix them with anything the first time. I figured that they would have a similar texture to sweet potatoes and he would only have to get passed the new flavor. Unlike the turkey where he is having to over come the texture and the new flavor. 

John blew me away. He willingly ate three bites yesterday and four today! He would have kept going today but I wanted to make sure he got plenty of turkey too so I gave him four bites and then mixed his sweet potatoes and turkey in with the bite or two that was left of the green beans in the bowl.
He ate it all!
I was dancing around and cheering and lots of high fives were given! 

8 more days with no symptoms and we will only need the scope to confirm that we can add green beans and turkey to our list of safe foods!!! 
I am waiting for an available appointment with a dietitian to help me make sure that while we are trialing food that John continues to get the correct amount of calories every day. With his tummy being full of trialing foods he cuts back a lot on formula. We need to make sure that we keep a good balance. 

All in all things are looking really good! 
Thanks for reading!!

Wednesday, March 13, 2013

baby steps then, BIG STEPS!

Quick update.

John has been trialing turkey for about two weeks now.
It started off well but then turned south. He wouldn't touch it alone and I started having a rough time getting him to eat it mixed in with the potatoes when I put the whole amount he needed each day into a jar of potatoes. I pulled back to only putting one spoonful of turkey in with a whole jar of sweet potatoes and after some hard work and a few tears I got him eating about half of that. 
I was getting very discouraged. He was only getting about 1/4 of what he needed each day to count as a trial and it was a battle that left us both exhausted emotionally and physically. 
I was about ready to give up and try another food.
I was hating having to force feed my child a food he obviously didn't enjoy one bit just to find out if it was even safe for him to eat it!! 
I decided that we would just stick it out for a few more days, remembering how long it took him to start eating the sweet potatoes willingly (nearly two months!!!). 
Then it happened. It's like we had to get over a hump or something.
Yesterday and today John ate an entire jar of sweet potatoes that each had half a jar of turkey in them during occupational therapy!! I swear his OT, Miss. C, is a miracle worker!
My hope is that over the next few days we will be able to transition him to eating the turkey alone.
If this continues to go well then next week we will add....


We are getting ahead of ourselves and imagining all the holiday meals John will enjoy with this combo of turkey, green beans, and sweet potatoes!
Fruits seem to be problematic. Apples and Bananas have been a no go so far. I suppose we will eventually have to trial another fruit but for now I'm okay with sticking with veggies, especially if we get turkey on board. 
I am still waiting on a call back for an evaluation with a local speech therapist that uses the same feeding therapy methods as the Marcus Autism Center to help us get more foods on board but I think we are doing pretty good with our Miss. C at Ducktails. We love her.

We are making some steady and amazing progress and I feel really hopeful about the future. 

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.