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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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Friday, April 6, 2012


We got our sample of Neocate Splash in the mail yesterday and I was so excited!!

I decided to have John try the grape-raisin first because it sounded the most appealing to me. He is still refusing straws and sippy cups so I had to stab a hole in the box and pour it into a bottle. Let me pause here to say how surprised I was when it came pouring out!! I expected it to look like juice or at least like colored water but no! It looks almost EXACTLY like his "milk". So while I'm putting it into a bottle it doesn't look any different but some day he will be able to drink it right out of the box and he will look like any other ordinary kid with a juice box and for that I'm super excited!!
 He only took about two ounces but seemed to tolerate it okay. At his next feeding I tried the orange-pineapple. John did NOT like this one at all!
This morning I offered the grape again and after a painfully slow (45 min) feeding he finally took about 5 ounces! (they are 8 ounce boxes). This gives me hope that maybe we can switch him over to the "juice" from the "milk" and once we get him into therapy and using a straw we can finally lose the bottles!! No more baby bottles!! That would be heaven!!
 My goal for John now is to be bottle-less by the age of 2!

I'm going to call a place here called "Duck Tails" on Monday. They do occupational, speech, physical, and feeding therapy. I hope that will take John's case and help us out. I've been having trouble getting him in anywhere for months now. Our neighbor recommended this place so I'm hoping that that will give us a foot in the door. We will be needing the feeding therapy once we start re-introducing foods into John's diet.
Time for me to start learning how to make/prepare my own baby food for John too! 
My Aunt gave me this book and I'm super excited about it!

Last night John decided he wanted to brush his own teeth. I didn't get any really good pictures but it was pretty cute.

He seems to be getting over his oral aversion a little bit. I think the dumdum suckers helped a lot with that.
Speaking of the suckers....
on a sad note, John may not be able to have those any more either!!!
In some rare cases, people can be hyper sensitive to corn, meaning that they react to EVERY part of the product, not just the protein. He has reacted to corn starch before even though it was in a "hypoallergenic" product. He may react to the corn syrup too. :( This would be really unfortunate since that would cut down what is safe for him even further, cutting out "hypoallergenic" alternatives as well.
I'm going to call his GI doctor on Monday and see what he thinks about it all. Right now I am FAR more upset about this than he is because for him if it's out of sight it really is out of mind. For now....
I dread the day that he starts to understand and realize all that he can't have.

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