Summer in Fall

In Arizona it’s hard to believe Fall has started. Temperatures still top the high 90’s, and sometimes 100’s. Fortunately, the evenings and mornings are cooler. Aidyn has done very well keeping hydrated during the summer. I think what has been helpful is that I have weaned Aidyn off the antibiotics for bacterial overgrowth. It always gave him runny/watery stools the first half of the week long antibiotic cycle. This is how I weaned him: In June, I started to space out the antibiotics by adding a week to the time Aidyn had off of Flagyl (initially only one week). By August he was able to go three weeks off the Flagyl. He’s currently on his fourth week off. 

First ice cream!

Two weeks ago I started adding ¼ teaspoon of baking soda to every 20 oz of water Aidyn drinks. Any extra gas build up he usually got seemed to disappear. Aidyn now consistently has soft-formed stools. They are smelly, but without tons of gas and liquid. I find if I give a drop of oil of oregano for a couple days, it will kill the bacteria that the probiotics missed and the smell will lessen.

Big Boy bed!!

Aidyn received his first dose of B12 shots the beginning of September. He will continue to get them, with labs done every three months. His weight was checked and I was surprised Aidyn didn't gain weight. He has been hanging around 26 ½ lbs since the beginning of summer. I am hoping Aidyn will have gained some weight by Friday, the next GI appointment.

Much needed haircut done by Mama.

I have some exciting news! Aidyn has started Preschool! He goes half a day, four days a week. It has been over six weeks and it is going smoothly. He did catch a cold three weeks into school, but he recovered quickly. His speech has improved and it is probably the combination of Speech Therapy at school, his peers and just plain time. So far there have been no potty accidents at school. He has good control of his bowels and is pretty regular. Despite that, potty training is very slow. He just doesn't want to take the time to go to the bathroom. I am hoping by the time he is four he will be potty trained AND off the bottle. Drinking Elecare formula out of anything else just won’t do. I shouldn't complain because at least he will still drink it and he has no feeding tubes.

Ready for school.

Finger paint!

Recap on Aidyn: He has only 5 – 10% of his small intestines left, no ileocecal valve, no appendix and 50 – 75% of large intestines left as a result of NEC. He has been off TPN/Omegaven( IV nutrition) for 21 months and drinks Elecare for half his calories. He eats what he can tolerate which is most meats, gluten-free starches and is limited to carrots, apples, tomatoes, and strawberries for fruits/veggies. He is allergic to wheat, cow’s milk, beef and bananas. Each day he drinks about 24 oz of Elecare at 36 cal/oz and another 20 – 24 oz of water with electrolytes and sodium bicarbonate. Along with liquid vitamins, he takes 16000 units of Vitamin D3, 2800 mg of fish oil (when I remember), almost half a sachet of VSL#3, and Ursodiol every day. I give oil of oregano as needed. He recently weaned off Flagyl. He has 2 -3 bowel movements a day, soft formed. That’s it!

I always pray for the miracle that he wakes up one day with everything intact inside. That’s the kind of faith I have and it has gotten me through it all.

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.