Through The Eyes of Jesus: I'm off and running!

Tuesday, June 19, 2012

I'm off and running!

Thank you for all of your prayers and offers of help. I am home and feeling really good. The cardiologist said I had a 90% blockage in my left anterior descending artery. I now have a stent and should feel like I have a lot of energy. I'm so thankful for a good doctor that followed her instinct and thankful for a mighty God that made a way for me when I really had no idea that there was a problem.

AJ continues to do well. There are no signs of infection and his wound site continues to fill in. Please keep praying that it heals up completely.

Psalm 100:3-5

Know that the Lord, he is God!

It is he who made us, and we are his;

we are his people, and the sheep of his pasture.

Enter his gates with thanksgiving,

and his courts with praise!

Give thanks to him; bless his name!

For the Lord is good;

his steadfast love endures forever,

and his faithfulness to all generations.

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.