Those dreaded food allergies

Auggie has been doing so well eating just about anything I dare give him. It's hard to resist giving him something when he sees it on my plate and just has to have it - sushi yesterday!!  I have to stop and remind myself that we are probably dealing with multiple food allergies that have yet to be confirmed.  Yesterday he started getting a little blotchy after drinking some vanilla rice drink, I didn't think much of it as he often gets blotchy after napping and rubbing his face.  So, I gave him some again today - by this evening he had swollen, red, itchy wrists, eczema on his back and red blotches on his face that extended from his mouth to his eyes.  He was also very cranky and did not want to eat.....I immediately scanned the ingredients on the rice drink and found that the only thing in the rice drink that his regular hemp drink does not have is "sunflower oil and/or safflower oil and/or canola oil".  He 's been eating canola oil for weeks so that's not it.  Could he be allergic to sunflower or safflower oil??? What else could it be??  We'll cut out the rice drink for now and see if his skin improves. 

So long feeding tube!!!!

Yay!!!!!!  That's an understatement, HOOOOOORRRRAYYYYYYYYYYYYYYYY!!  The feeding tube is out. Auggie is now drinking and eating really well on his own.  The feeding tube was in for 9 months and it took 54 days to wean him completely.   Phew!!  It's an anti-climactic ending to a long nightmare because he has been making a little bit of progress every day.  We had great support from his GI doctor, a speech (feeding) therapist who came to our house 2-3 times per week and the North Bay Regional Center and Napa Infant Program who helped us pay for transportation costs to Stanford, a therapist to keep us sane, and a nurse to give us some respite. Thank you to everyone who was invloved in this amazing transformation.  We knew the little guy could do it - he is a true fighter!!!

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....

Tube Weaning: Update

It's been a while since I've posted because we've hit status quo.  We reduced Auggie's calories to zero, took the tube out last Sunday and then he got sick.  He developed a high fever and we had no choice but to put the tube back in on Monday.  After 4 days of fever he broke out - Roseola!  So, now he's eating about 75% of what he was doing during his best days and we give him 140ml of formula and 150 of pedialyte at night.  He's drinking less and less very day it seems.  It's very frustrating that we are making no progress with his drinking skills/desire....his speech therapist is back on Monday after a 2 week break due to Auggie's illness, I hope she has some suggestions.  We are giving him avocadoes again as he needs the calories and he LOVES them.  We have not noticed the eczema again so it could have been from the chicken he tried a few days before he had avocado.  His weight is stable at 18 pounds (7% weight loss overall) and he has been pooping regularly which is great. 

Tube Weaning: Day 13

Auggie was really hungry this morning when he woke up - he had a big breakfast and then demanded my bowl and ate my cereal.  He drank 30 ml from his Mr. Juice Bear but then was done for the day (drinking any larger amounts).  He sipped from a juice box for the first time - drinking from a straw seems to be the way to go with him.  He happily ate pretty much everything today but I had to stop giving him avocados when I noticed an eczema rash on his neck and wrists - he has latex sensitivities so he may have issues with avocados and bananas as well - we'll take a break from them for now to see if his skin improves.  Tonight he's just getting some water and tomorrow morning we plan on taking the tube out.....hopefully he'll start drinking more.