Through The Eyes of Jesus: Looking Back at God's Provision

Wednesday, March 21, 2012

Looking Back at God's Provision

AJ's day went well. His pain has decreased and we visited with the pediatrician today. She agreed that he shows signs of a partially blocked urethra. It could be blistering or strictures. We hope it continues to get better on it's own. We are scheduled to see the pediatric urologist in two weeks. We would like to be prepared for any problems that might arise in the future.

AJ's foot is infected tonight. It blistered last night into a blister that encased half of his foot. We drained it and he soaked in a tub with vinegar. I hoped that would take care of it but tonight the blister re-inflated and he has a lot of drainage and pain. We treated it and he is going to sleep now. Hopefully he will feel better in the morning.

Today I celebrated my 50th birthday. It was a good day. Looking back I can see so much of God's planning and care in the details of my life. I am so thankful for what He has done and I look forward to what He has in store for the future. Of this I can be sure...

Romans 8:38-40 (English Standard Version)

For I am sure that neither death nor life, nor angels nor rulers, nor things present, nor things to come, nor powers,

nor height nor depth, nor anything else in all creation,

will be able to separate us from the love of God

in Christ Jesus our Lord.

Thank you so much for all of your prayers. Tonight, as I type, KJ is struggling and very sick from a new medication she started. We have stopped the medication and hopefully her pain will resolve and she will get some sleep.

I'll end with a picture of AJ and his Dad. They both received matching sweatshirts from Scott's place of employment. AJ was so excited to look like his Dad.

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.