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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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Saturday, July 19, 2014

Got Peaches?

It's been almost a week since we started the "zuspinoa" trial, and so far, we have not noticed any symptoms to make us question if these three new foods are causing any problems. I plan to call John's GI doctor on Monday to schedule a scope, which will probably be 2-4 weeks out. That will give us plenty of time to ensure that his body is aware of the new food on board and for his immune system to attack it if it's going to.
John is still willingly taking at least five bites a day, but it's becoming clear that this isn't, and probably won't be, one of his favorite foods. That's okay though because just having quinoa as a safe foods brings a lot of opportunities for some variety in John's diet. 

Speaking of favorite foods, John is eating so many jars of peaches a day that we are having trouble keeping them stocked up in our pantry. He's eating 5-10 jars a day! We are having to rotate which grocery stores we go to because we buy every single jar they have, every other day. We go to two different Krogers, two different Bi-Lo's, two different Publix, and sometimes two different Wal-Marts. Most of the time we can't get more than 10-12 jars at a time. Sometimes we can only find 2-6 jars.
There have been days when I've had to go to multiple stores in one day just to scrape together 6 jars, hence the rotation of stores. We have to give them time to restock the shelves before we wipe them out again.
I totally hit the jackpot at Kroger yesterday though, and came home with 29 jars of peaches. 

I feel so silly sometimes, checking out with that many jars of peaches, especially when that's all I'm buying, but it's usually a great time to spread some awareness with the cashier and the other customers in line with me. I also feel guilty buying up, what feels like, the entire stock of Beechnut peaches in the city every week. Then I remind myself that not many kids are limited by brand like mine is. 

Hopefully this baby food stage is coming to an end for us. Feeding therapy is going great and John's making some very big strides towards eating age appropriate textures. I really think going to school and seeing other kids eating will help a lot, even if it's going to make fitting in feeding therapy difficult. 

Thursday, July 10, 2014


Zuspinoa. Yes I made up that word. It's pronounced "Zoo-spin-wah"
It's a made up word for the new food John is trialing!! YES! We are trialing again and three foods at once this time!
Zucchini, Spinach, Quinoa. 
We stopped trialing food so that John could focus on feeding therapy without the added stress of trying new foods. Trials were becoming stressful because we had exhausted Beech Nut's stage two baby foods and all the stage three had combos with ingredients that we knew or suspected to be unsafe for John. Making my own baby food wasn't working out so well sensory wise for John either.
I had been casually checking out the baby food aisle to see if they'd come up with anything new we could try and then one day, there it was.

So far the trial has been going better than I thought it would. We started on Monday with five bites and I was worried he would totally refuse to try but he was very willing! He said "I like it!" after the first bite and willingly ate four more. The next day he had about 5 bites and asked to be all done, but on Wednesday he ate half a jar! Today five bites was a big deal and I think that was because we had just gotten home from a very intense feeding therapy session. So far we've not had any new symptoms!
He has been coughing a lot after eating which is a concern but he was doing that before we started the trial so we aren't attributing it to the new food.
His feeding therapist wants another swallow study done to see if he isn't having some problems there that might be causing some food to go down the wrong way and make him cough like that.

John now has feeding/speech, occupational, and physical therapy at one place. He goes for two hours twice a week. He's improving in all three areas with feeding being the most progress!

In other news, John is going to start 3K in the fall! He's going to be going full time with an extensive IEP. I was really really hesitant and worried about sending him to school but after meeting with the school board after his evaluation and seeing the IEP they made up for him I feel a lot more comfortable. Now to decide that I am going to do with all that free time.