Through The Eyes of Jesus: Easter with Family

Monday, April 25, 2011

Easter with Family

It was a beautiful day to celebrate the resurrection!

We started out the day with a sunrise church service

and then enjoyed the afternoon with family

We had an Easter Egg hunt and it seems J always ends up in a tree??

RJ and Scott enjoyed the sunshine

AJ offered help while waiting on the trampoline

Grandpa gave AJ some tips on finding his eggs.

The girls enjoyed dressing up.

It was good to have some of our kids (from out of town) here for the day.

AS and E are here visiting this week. Tonight we celebrated April Birthdays and are relaxing with some down time; something I don't do often.

What a great day!

Barbara

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What is Recessive Dystrophic Epidermolysis Bullosa?

It is a rare genetic disorder that causes AJ's skin to blister and tear with the slightest friction or contact. He can have severe blistering anywhere on his skin. Internally his mucus membranes and organs are affected. Due to blisters in his mouth and throat, he eats very little by mouth and receives his primary nutrition through a gastrostomy-jejunostomy tube (G-J) that is placed in his stomach and small intestine. He struggles with breathing at times as blisters form in his mouth, throat and upper airway. There is no cure for EB. AJ will live with constant pain and scarring. With each tear to his skin, the skin scars and eventually limits his movement. His fingers and hands will begin to fuse and curl together. The only treatment for EB is daily wound care and bandaging. Each day we unwrap his body, bathe him, treat his open wounds and then wrap him up all over again. AJ has many medical providers that help us with his care. He has a power chair that he uses in the community to reduce the friction on his feet. He also takes many medications to reduce the acid reflux that damages his esophagus and to help with the intense itching that EB creates. Children that do not succumb to infection, malnutrition or airway complications develop an aggressive form of skin cancer in their teen years. Children with AJ’s disorder are often referred to as, “Butterfly Children” as their skin is as fragile as a butterfly’s wing.