Through The Eyes of Jesus: Good News

Wednesday, February 22, 2012

Good News

I received a message this morning that AJ would be scheduled for his esophageal dilatation in mid April. I thought they must be crazy, he can't wait until April as his throat will completely close. I called the clinic back and as soon as the secretary answered she said, "I have a new date for you; It will be March 1st". I told her that I was glad they found a new date as I was wondering if we were going to have to travel to Cincinnati for the procedure. I am thankful that plans are moving forward and that I don't have to look at alternative arrangements.

AJ is enjoying the warmer weather. He loves to go for walks. We have a large stroller for him so that he can relax and go along for the ride rather than always driving his wheelchair. He usually falls asleep before we get back home. I am excited about spring even though I realize we might get a real Minnesota blizzard yet. We are looking at fencing our back yard this spring so that I don't have to be concerned about AJ or his dog, Jackie, running up to the road behind our home (it's pretty busy for being out on the edge of town). Any one put up a chain link fence before? I'm open to ideas and help.

Here is our back yard. The picture is taken from the road.

You can't really see it in the picture but one side has a fence so we need to finish the back and opposite side. My first step is to find out exactly where the property line is, then draw the plan up and purchase a permit.

I so can't wait for summer!

Barbara and AJ

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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.