Through The Eyes of Jesus: Welcome Home Jackie

Sunday, October 16, 2011

Welcome Home Jackie

Today was a big day at our house. Our newest family member joined our household. AJ's new service dog "in training" arrived today.

Her name is Jackie!

Our hope is that Jackie will eventually be trained to carry AJ's feeding pump so that he does not have to carry it all the time. Jackie is part Australian Shepard and Catahoula. Both are breeds that are used for service and rescue animals. We will be taking classes locally for her training. She is seven months old and very friendly.

We arrived home tonight to AJ at the front door. "Where is my doggy (pronounced goggy by him)?" He was so excited - I think mostly to boss her around. As soon as she got in the door, AJ says to her (in his most assertive voice), "Here is my pump, Carry It" We laughed. We told him a few weeks ago that we were looking for a dog to help carry his pump. I think AJ will wear out Jackie before she does. He walks around the house yelling, "wo, who". Then we hear, "what's her name again?"

Thanks for following us on our journey. Aj certainly is a happy guy, hopefully he and Jackie will become a great team.

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.