Through The Eyes of Jesus: First Day of School

Friday, January 7, 2011

First Day of School

Aj had his first day of school. He started out pretty upset and was not happy that I was not going with him. The school staff were great and it wasn't long that he was taking part and enjoying himself.

He will go twice a week for two and a half hours each time. It's a great little group of kids and I think he will really enjoy himself. After he returned home (tired but with a smile on his face) he said that he cried at school and wanted Dad. (Of course he wanted Dad. Dad wasn't the one forced him to go) He also said he wanted to go back again because he had fun. The confusing part was that he said that he had coffee and that it was hot. Not sure what that was about but I'm sure he will have many stories to tell.

Here are his first day of school pictures. He was determined not to show his face as he was very upset with me for sending him :)

On a medical note, we had our visit with AJ's airway doctor and she stated that she personally will be in the operating room to look at his airway and then intubate him for the esophageal dilatation. We are just waiting for the date. I am thankful for Dr T. She will get a very good look at his airway and she will do a great job with his intubation. She takes very special care of AJ.

Today is our 27th wedding anniversary. We are off to celebrate; should be a great weekend. Hope yours is too.

Barbara

1 comment:

AnonymousJanuary 7, 2011 at 1:57 PM
I am so glad to hear his first day at school sent well! Happy aniversary!
KaDee
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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.