Food discoveries: Coconut milk, yogurt and kefir

We suspect that Auggie has milk protein allergies, which is what led us down the feeding tube path to begin with.  This means that cow's milk is out and possibly also soy milk.  One of the greatest discoveries for us has been the coconut products made by So Delicious - yogurt and kefir - we add protein powder to both.  Full fat coconut milk is a great addition to purees.  We also like a vanilla flavored hemp drink made by Trader Joe's. It contains vitamins and calcium and 3 grams of protein per ounce.  We add a teaspoon of rice protein powder, 2 tablespoons of rice cereal and 1 teaspoon of canola oil and heat it up for a delicious calorie packed beverage that is more like a meal in itself.  Auggie sips this beverage from a bottle with a nipple that we've cut a larger hole into.  So far he seems to like the flavor....we'll see how tomorrow goes.

How we pump calories into his food

Every calorie counts when your kid is not even on the growth charts for weight.  In order to get the most bang for the buck we make his purees by mixing his veggies and fruits with full fat delicious coconut milk.  His sweet potatoes are something ridiculous like 50 calories per ounce!  We also use canola oil in his food and we add rice protein powder to just about everything he eats. We track every single bite and record it in a spreadsheet that gets sent to his nutritionst at Stanford.  It's a full time job makng sure that he gets 15-16 grams of protein, 500mg of calcium and 100 calories per kilo every day!!!

Tube Weaning: Holding Pattern

We are so close to pulling the tube out once and for all.  He eats really well now and only gets water through his tube at night.  He does not drink very well so he still needs the tube for hydration.  We've pulled his tube out twice now and both times he has come down with a fever and we've had to put it back in.  He usually drinks about 4-5 ounces per day but today we had a major breakthrough when he drank 9 ounces of a hemp protein drink.  His tube will stay in until we see a consistent pattern in his drinking...hopefully only a week or so....