Through The Eyes of Jesus: Happy Valentines Day!

Monday, February 14, 2011

Happy Valentines Day!

It's been a good day with all of the kids. RR was discharged from the hospital last Friday. He was there twenty eight days. It's been interesting as it's like having a different child at home. Psych medication can change so much. Right now he talks constantly and very fast. He doesn't' really have a conversation with us; instead he sounds like he is announcing information - it's a start. Time will tell if the new medication is a good match for him.

For those of you wondering; We found AJ does not like French fries. We took him to Mickey D's and made a big deal of it - he tasted one and spit it out. He didn't quit trying though. He spied my apple pie and found he LOVES apple pie. Now every time we run an errand he keeps asking for apple pie - Pretty please (Thanks KJ for teaching him that :)

Aj has had a hard time with gagging and vomiting since his procedure. I am not really sure why but it most likely has something to do with the position of his GJ tube or his reverse motility. His food keeps coming up into his stomach and out his mouth. I'm trying to give it more time. We see the pediatrician on Friday though I don't expect her to know a lot about it. I'll call the GI doctor if it doesn't get better soon. We are getting some food into him so I don't feel like it's an emergency. The pain clinic called today and they wrote AJ a prescription for Ativan. I don't have any immediate plans to use it but the next time his wounds are especially bad and he has a lot of anxiety before his bath, we are going to try it.

AJ took "Toy Story" Valentines to school today. He had lots of fun and came home asking for more candy! I guess he is making up for what he couldn't eat at Christmas. He is still pretty careful and only eats small bites of things. Scott bought me a bouquet of balloons and AJ was determined that they were for him. He kept saying, "mine" and did not want me to touch them.

Here he is with MY balloons.

Happy Valentines Day!

I John 4:19 (New International Version)

We love because he first loved us.

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.