New Goals

Our goal for Aidyn is to increase his oral fluid intake and calorie consumption. We must make up for what Aidyn would have been getting from TPN and lipids. I am searching for calorie dense foods he can tolerate. As was mentioned in a previous post, Aidyn had both the skin prick and skin patch allergy testing done and was found to be sensitive to beef, cow’s milk and possibly wheat. A recent RAST test was done and I got an unofficial, over the phone result read by the nurse. It appears Aidyn may have sensitivities to peaches and bananas, too. Giving up beef is easy, but finding alternatives to cow’s milk and wheat that contain a lot of calories is difficult. Of course, Aidyn gets most of his calories from Elecare, an elemental formula. He is easily taking 21 – 23 ounces of that daily. Sometimes he may have a few ounces of goat’s milk or coconut milk, too. Here’s an example a typical day of eating, which includes supplements, vitamins and meds:

730 am – 120 - 150 mls (4 -5 oz)of Elecare, fish oil (1g of DHA/EPA), Ursodiol
930 am – breakfast: goat cheese, corn tortilla, avocado, ¼ - ½ tsp coconut oil, vitamins
12:30 pm – 120 mls Elecare
3:30 pm – 120 – 150 mls Elecare, 1 g fish oil
6:00 pm - dinner: rice with Braggs amino acids (like soy sauce), chicken sausage, toddler carrots, maybe fish oil
8:30 pm – 120 mls Elecare, ¼ - ½ tsp coconut oil, Ursodiol, Lovenox injection
11:30 pm – 150 mls Elecare

Aidyn also eats turkey, pork, deli meats, eggs, tomato or spaghetti sauce on pasta or rice and peas. He snacks in between with foods like: pasta, pretzels, potato chips, cookies, goat cheese, bread and tortillas. We stay away from most fruits and veggies because of the sugar and fiber contents. He does have a little applesauce with his enzymes, though. He eats gluten free foods, just like his sister (she was unofficially diagnosed gluten sensitive when she was two). I use Smart Balance original Light “butter” since it’s non-dairy and coconut oil in cooking. Before each Elecare drink, meal or snacks with protein or high fat, he is given Creon 6000, a pancreatic enzyme. He also drinks at least 8 ounces of oral rehydration solutions (ORS) in between. I do not use Pedialyte for ORS because it seems Aidyn doesn’t tolerate it well. I think it may be the sugar. Instead, I make his ORS from a recipe I found on the internet. It uses rice cereal in place of sugar. The recipe is as follows:

• 1/2 cup dry, precooked baby rice cereal
• 2 cups water
• 1/2 teaspoon salt

I combine the ingredients in a blender until well dissolved and smooth. It’s thick, but drinkable. It is refrigerated and thrown out after 24 hours. I think it works better for Aidyn since the rice absorbs slower than straight sugar.

I have been attending a monthly webinar series in nutrition for short bowel syndrome called Maximize Health, through Aidyn’s medical supply company. ThriveRx is great because they aren’t just a pharmacy providing medicines and supplies, but a company that provide educational nutritional support with the help of their pharmacists, nurses and dietitians. The series has been helpful in knowing what percentage of proteins, fats and carbohydrates belong in his diet.

Right now, the challenge is trying to separate Aidyn’s drinking from eating. He tends to want more to drink the later part of the day. I spread Aidyn’s drinking by offering one or two ounces at a time and distracting him with playing, books or walks (or whatever). Of course, that’s not always possible and he will drink a large amount and then “dump” a half hour later. I do offer him drinks when he’s not asking for it in an attempt to hydrate him before he’s thirsty. It will be easier as he gets older to make him understand that it’s best he drinks his fluids more slowly, especially when he can communicate to me better.

This video is from back in November, when he was trying Goat cheese for the first time. He ended up eating quite a bit after this video and it's one of his favorite foods.