Through The Eyes of Jesus: Happy Valentines Day!

Tuesday, February 14, 2012

Happy Valentines Day!

AJ has had a good Valentines Day. He carefully wrote his name on his Valentines for his friends at school. He was so excited about his Scooby Doo Valentines. EB certainly has an impact on Valentines Day. It's not necessarily bad but it's different from my other children's experience. For AJ, it's not the candy that is the big deal on Valentines Day; It's the cool super hero on the Valentine.

AJ is really struggling with his throat (esophagus closing). He tells me many times a day that he is sick and he points to his throat. He is not eating much at all by mouth. Usually he will at least nibble on something; now he doesn't even try. (Thank God for G tubes) I can hear him "slurping" his saliva. I called the doctor and again they said they are working to get it set up. I told them it needs to be soon. So we are waiting for that call.

This past weekend we celebrated my parents

60th wedding anniversary.

Happy Anniversary Dad and Mom!

Hope you have enjoyed your Valentines Day.

We love because He first loved us.

I John 4:19 (English Standard Version)

Barbara

1 comment:

MeganFebruary 20, 2012 at 10:30 PM
I love that verse :)
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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.