securing bandages on the legs

Keeping the bandages on the legs from sliding down has always been a challenge for many with EB.  

This is how we keep them to stay up.

I cut a piece of Blue-line tubifast the length of the leg and then add 5".  I then cut a slit on one side at the top that is about 5" long.

Then this is how it goes on the leg and up over the belly

 We then use rolled gauze to wrap around the torso securing the flaps in place.  You could also just let the flaps hang over the edge of the diaper as well.  

It helps hold everything in place and helps keeps the bandages clean and can be changed through out of the day if needed.

 

©Garrett's House 2021

Garrett's Bear

After Garrett was born we received  a care package in the mail and in that package was a teddy bear.  I didn't give it too much thought about it at the time, but after he died it became one of my most prized possessions.  Even though a teddy bear could never replace a child, it did give something for my empty arms to hold.  I named him my Garrett Bear.

I have always had a desire to do/make something for the families that have lost a child to EB in remembrance of their child.  I have come up with a few things over the years but nothing really stuck until now!

Please take a moment to check out Garrett's Bears!   I hope this will become an on-going successful project!  

 

 

 

 

 

©Garrett's House 2021

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

EB in the News

There have many many EB related news stories recently!


Federal lawsuit filed against Golden Corral restaurant in Michigan over Disabilities Act violation

Wayland Teen With A Rare Skin Disease Defies Odd

 SI Parents Fight for Student With Disorder

Her delicate skin belies a tough spirit

Phoenix girl born with tough spirit, delicate skin from 'butterfly disease'

Brave 3-Year-Old Girl’s Skin Blisters At Every Touch 

Benefits and fundraisers set for local girls

 

Purple rays of hope for Windham 3-year-old

Slightest touch leads to raw blisters for 7-year-old girl

 

And finally, please take a moment to meet sweet baby Katelyn.  She was born in January and has a rare form of Junctional EB called JEB-PA.  Unfortunately she isn't doing well and no one is sure how much time she has left.  Please pray for her family during this uncertain time.