EB awareness week 2013- day 2

There are many kids with EB who have a g-tube in their stomach to make eating much easier.  Joey got one when he was 3 weeks old.  Most kids with g-tubes are on a feeding pump over night.  The pump runs at a slow feed for about 12 hours delivering a set amount of formula to the person.  We found out quick that Joey could not tolerate pump feedings so we switched to bolus feeds which means every 3-4 hours we would attach a special tube to his g-tube and pour his baby formula into his belly.  It was the same concept as feeding a baby every 3-4 hours but instead of drinking it by mouth we would just use the tube.  

Once an infant with a g-tube they typically switch from formula to Pedisure or other high calorie ready made formula.  However there are some in the EB community (and general g-tube community for that matter) use a blended diet vs Pedisure or some other ready-made formula.  A blended diet is basically normal food that regular people eat just blended up so it is liquified enough to go thru a g-tube.   Not many in the EB community use a blended diet but there are a few of us:)  Blended diets are very controversial in the medical community but I am not going to start a debate.  Instead I will share our recipes we use for Joey's blended diet.  

The main ingredient we use is Kefir (it is a yogurt drink)

32oz Kefir  (560 calories 44g protein)

Next I use one 16oz serving of a fruit and one 16oz serving of a veggie.  I mix and match each time depending on what is available at the store and/or on sale.  Here are the fruits and veggies we have tried.

16oz servings:

FRUITS
3 large apples diced (288 calories 16.2g fiber 1.6g protein)
2 mangos diced (214 calories 6g fiber 3% iron)
3 large pears diced (288 calories 15g fiber 6% iron)
3 large peaches diced (114 calories 5.5g fiber 3% iron)
3 large bananas chopped (315 calories 9g fiber 3g protein)
1 pint of Blue Berries (194 calories, 8.2g Fiber 2.52g protein, 5% Iron)

VEGGIES
1 large sweet potato diced (480 calories 6g fiber 3g protein)
1 bag baby carrots chopped (159 calories 6g fiber 3g protein)
2 bunches kale (68 calories 3.9g fiber 6.6g protein)
2 Avocados (454 calories 12.9 fiber 4.2g protein)



GRAINS- I recently started experimenting with using a grain...this is what I have tried thus far.  I don't use it every time though

1 1/3 cups cooked minute rice multi grain medley (brown rice, red rice, wild rice, quinoa)
320 calories 4g fiber 8g protein 16% zinc 8% iron


I blend the fruits, veggies and Kefir with 8oz prune juice (180 calories 3g fiber 4% iron 4% zinc)

Once this is all blended it makes about 72 oz of blended food.  I then divide it into two separate 36oz containers. I then add the following to EACH container:


3 tablespoon Happy Bellies Organic Baby Oatmeal (60 calories 2g fiber 10% zinc 80% iron.)

1 tablespoon olive oil or coconut oil (120 calories)

1 tray (1.5oz) of Benecalorie (330 calories.)

Each container comes out to around 1300 calories each.  He gets 7-8oz servings 4 times a day depending on how much he each on his own by mouth.  I make his blended food about 3 times a week.  

In addition to the blended diet he also gets 7oz of 30cal/oz Elecare Jr. Formula and 120 cc of free water per day.

The doctor wants him between 1800-2000 calories a day when possible:)  He needs those calories for wound healing, energy (which he had a TON of) and to gain/grow.    

There are many blended diet recipes out there and this is just an example of what we use!  Yes this is a lot of work, but I think Joey is healthier because of it!

 

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