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!

October 25, 2013

EB Awareness Week 2013- day 1

Today is the first day of international EB awareness week!  It runs every year from October 25-October 31. In years past, I have done a blog post every day on some EB related topic. This year will be no different!!  I should have planned little better on topics but with 4 kids and a job it's hard to do that sometimes! 

This first post will be a reintroduction of our family. Though our story is scattered through out this blog and on our family blog: Four Busy Bees and Two Butterflies, I know people don't always have time to search thru archives.  So I will do a little introduction of our family:-)

I am Sara, I am 36 and I was born with Epidermolysis Bullosa Simplex Dowling Meara or EBS-DM for short. I have a defect in my Keratin 5 gene meaning my EB is genetic and is not contagious.  But it also means it will never go away even there are times I have no visible blisters or wounds.  I have been married for almost 13 years to a great guy named Joe:)

Our oldest is Sami and she is 11.  She too was born with EBS-DM. She is a typical 11 year old who enjoying singing, acting and drawing.  She goes to a regular school and has many friends. 

Next came Garrett and he too was born with EBS-DM.  Sadly he developed some complications during his 2nd week of life and passed away when he was 12 days old.  Garrett's House was created in memory of him to further educate the world about EB and to help the families of other EB babies.  This coming December Garrett will celebrate his 9th birthday in heaven and his 9th angel day as well. 

Summer was born 15 month later.  She is now 7 years old and loves to read and play on the computer. She does not have EB!

19 months later came Gracie who is 5 and just started kindergarten this year.  She has many friends and loves to play with her dolls.  She too does not have EB!

Then came Joey.  He was born in March of 2011. He was born with EB and was the most severe of my three:(  He was born with no skin from the knees down on both legs along with some missing skin on his wrists.  When he was 10 days old he started having breathing problems and was admitted to the PICU.  Within hours of arriving to the hospital, he went into respiratory failure and spent 7 days on a ventilator and almost needed a trach...but thankfully the blisters and swelling had gone done enough where he didn't need a trach.  But it was discovered that he had severe acid reflux.  The reflux was causing him to aspirate when he swallowed. Which in turned caused damage to the back of his throat spreading into his upper airway. (which is why he stopped breathing) He could no longer safely eat by mouth and required a feeding tube to be surgical  placed in his stomach. 

Today Joey is 2 1/2 and is ALL boy! His skin is doing much better but he is still wrapped from his chest to his ankles for his own protection. He is able to eat by mouth now but 80% of his daily nutrition is still thru his g-tube. He loves Mickey Mouse, Sponge Bob, riding on his sister's scooters and swinging on his swing.  He loves to play with cars and climb on anything thing he can reach! 

My hope that this blog helps spread awareness and educate those about EB and to make the journey of those with EB a little easier to navigate!!