Rest in Peace my Butterfly Friends

March has been a rough, rough month for the EB community. 

On March 15, a little boy named Harry from England died of complications from Pneumonia.  He was 3 1/2 years old and had bravely fought Junctional Hertliz EB since birth.  Then just two days his little brother Cody died of the SAME thing.  He was 21 months old and he too bravely fought Junctional Hertliz EB since birth.  Their parents were just broken hearted; losing their only two children just days apart.  This is one of the many articles written about them.  Here is another one too.

Then on March 21st, a fellow EBer from Florida, Dona Reynolds, lost her brave battle to RDEB at the young age of 25.  She didn't live too far from me and I tried to make it to her funeral but stuff happens and things don't always go as planned. 


And as if those three weren't enough....I woke yesterday to learned the sad and shocking news that a friend and fellow EB mom died suddenly early Wednesday morning of a heart attack; she was only 37:(  She leaves behind her husband, 4 yr old daughter and 8 month old son who has EB.  Her death has really shook the EB community to its core.  If you are on Facebook you can visit the family's EB page here.  Her funeral is Monday but so far the funeral home doesn't seem to be "on-line". 

I hope we can get through the rest of the month without anymore losses and hopefully April will be a kinder month to the EB Community! 

Blended Diet Recipe

Kale: a green leafy veggie unknown to me until a few months ago!  I heard many good things about it so I got some to make baby food out of it for Joey and it worked GREAT!!!


You can read about the Nutritional Value here but I promise you its GOOD stuff!

My G-tube receipe for today:

12 oz of Yoplait Simplait Vanilla Yogurt (400 calories, 14g protein)

12 oz of mix berries- blueberries, raseberries and strawberries (140 calories, 2g protein,8% iron, 6g Fiber)

7oz Gerber baby food Pear/Oatmeal/Cinnamon (140 calories, 2g protein, 40% zinc, 4g Fiber, 90% iron)

3oz chopped Kale (42 calories, 3g fiber, 3g protein, 9% iron)

4oz Almond Milk (45 calories)

2 tablespoon Olive Oil (240 calories)

3 tablespoons Happy Bellies Organic Oatmeal (60 calories 10% zinc, 80% iron 14g protein)

2 containers of Benecalorie (240 calories and 7g protein EACH)

So the grand total make 33 oz of pureed food.  1547 calories; 51g of protein; a ton of iron, zinc and fiber as well!  Joey gets about 11 oz of puree food per day thru his g-tube plus what he eats and drinks on his own.  

©Garrett's House 2021