Through The Eyes of Jesus: Wednesday testing

Friday, January 13, 2012

Wednesday testing

AJ goes in next Wednesday for a barium swallow test. His vomiting has increased and we think it might be related to strictures in his esophagus. His last dilatation was February 2011. His GI doctor wanted to just go ahead and schedule the dilatation but I don't want to do something without knowing for sure that strictures are the problem. I'm hoping he does ok swallowing the stuff (ick). If he needs the dilatation the ENT dr will assist as she is the only one that can intubate him safely. He has a really bad cold right now and I am hoping that his chronic cough does not blister his throat too much. He has missed a few days of school due to his cold.

This is what he spends his time doing

(Thanks Grandma and Grandpa for the fun)

Please keep praying for Tripp and Courtney. They have requested prayers for peace.

You keep him in perfect peace

whose mind is stayed on you,

because he trusts in you.

Trust in the Lord forever

for the Lord God is an everlasting rock.

Isaiah 26:3-4 (ESV)

Thanks,

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.