Garrett's House is dedicated to the support, advice, and education of a genetic skin condition called Epidermolysis Bullosa or EB for short. Currently there is no cure or effective treatment for EB. Please take a moment to learn about EB, and how you can support others who struggle with EB everyday. Garrett's House also honors the memory of those who lost their brave fight against EB. Please check out the Garden of Angel to learn more about the precious butterfly angels.

October 26, 2013

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:

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)

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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