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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, January 7, 2012

New Game Plan

We talked to the nutitionalist yesterday and found out that John has lost a little bit of weight. She decided to have us increase the calories in his formula by mixing it differently. Last night, after his third bottle made this way he threw up quite a bit. No good! So apparently his body is going to take a little time to adjust to the higher caloric content. So now we will be upping the calories for his first two bottles of the day and then going back down to the normal calorie count for the rest of the day.
Today went much better than yesterday and he has kept everything down.
We also started a steroid today to try to get him to stop gagging and coughing after eating. That has been a special challenge of its own because it tastes nasty, we have to clean out his mouth after wards with out him swallowing any thing, and he can't eat for at least two hours after taking it. It has to stay in his esophagus as long as possible to absorb.
Because of his recent weight loss we are giving the steroids some time to work along with the higher calorie formula, if that doesn't show some significant improvement our next step is a short stay in the hospital for observation and possibly a feeding tube.
We are already seeing a slight delay developmentally because of his lack of nutrition.
We have an appointment on Wednesday morning with an Occupational Therapist to see just how far behind he is, and so they can watch him eat. What they say will also influence when/if we do the feeding tube.
John took 23 ounces again today!! That's three days in a row that he's been 1 ounce away from his goal!

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