Through The Eyes of Jesus: Star War Legos

Thursday, October 25, 2012

Star War Legos

The weather is dreary and I read in the news that it may change to snow and 20 degree wind chills. Ugh. What a nice morning it is; inside that is. AJ is talking and feeling better. We even got a smile.

Last evening Scott came to visit and AJ showed him a little card that said he wanted to play. (Prior to surgery, we had made up cards with pictures so that he could tell us what he needed/wanted) Problem was we could not figure out what he wanted to play with. We guessed and guessed until it looked like a game of charades. Finally, out of exasperation, AJ spoke. I did not expect this on his day of surgery. We had a terrible time making it out and he had to repeat it multiple times. "Star War Legos, he blurted out!" We did not expect that request and we didn't have any for him. I had forgotten that the last time he was in the hospital Scott had surprised him with a small little star wars lego set. Apparently he had not forgotten and was expecting it again. The hospital searched for legos and eventually found some but no star wars lego people. Oh well, it was so good to hear him talk.

AJ's bleeding has completely stopped and the resident doctor thinks we will go home today. We need his ENT to see him before we can actually leave and that usually means much later in the day. We are happy for the good news. His doctor said we will not know, for up to three months, if he avoids the more serious complication of nasopharyngeal stenosis (I'm not even going to bother to explain unless it becomes something we later deal with). We will take it a day at a time and keep trusting God for the grace he provides new each day.

Thanks so much for praying for AJ and a special thanks to all those that offered to help with the important details of our other family members.

It is a good day!

Sing and make music from your heart to the Lord, always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.

Ephesians 5-19-20

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.