Through The Eyes of Jesus: Strictures

Wednesday, January 18, 2012

Strictures

Thanks for all your prayers. AJ did very well on his swallowing/esophageal study. He drank the barium like a true champ. The preliminary results are that he has strictures again and he will need a dilatation. I think his esophagus has been narrowed for some time as he has had vomiting for a few months. I suppose it is just getting smaller. I am not in a hurry because he still has a a cold and he needs to be healthy before he goes under anesthesia. He has been very hyper today as they flavored the barium with sugared Kool-aid and wow does he react to sugar!

As always we ended our appointment with a visit to the Mayo cafeteria where the lunch ladies always have jello on hand for AJ. Today he picked out green jello but he didn't actually take any bites and brought it home.

This picture was taken at the Spam Museum (Yes, you read it right); a true Minnesota landmark. We all tried Spam pizza but AJ stuck with licking the cheese off and then spitting it out. He is the only one of our kids that has been allowed to spit out food. He gets the chance to taste it and then out it comes. I'm guessing lots of kids with EB do this.

I'll let you know when I hear a date for the procedure. It has been a blessing that he has gone almost 12 months between dilatations as it can be a much shorter period of time.

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.