Through The Eyes of Jesus: Before the temperature drops

Monday, January 17, 2011

Before the temperature drops

I'm enjoying calmer days at home. RR is safe in the hospital and happy to be there. He usually derives a sense of safety knowing he can not hurt himself or others when in a psychiatric unit. They have just started to lower one medication and it seems like it will take forever if they are really going to remove all his medications and start over. There has been some disagreement between the doctors on the value of that. This is the first time he has ever been hospitalized close to home. (Thank you God for bringing us to Rochester) We used to have to drive two plus hours just to visit him.

AJ is starting his quarterly doctor's appointments this week. We try to see most of the specialists at least quarterly. He will see the cornea specialist and they will dilate his eyes to check for any damage. EB can cause blisters and abrasions in the eye that can be very painful. AJ has not had regular problems with this and for that we are especially thankful.

AJ will also see his pain team. I am going to ask them about an anti anxiety drug to give him before bandage changes. He holds onto his bandages so tight when we try to remove them. He will take a swing at you if you are not careful. The anticipation for him seems worse than the actual pain. Last night he was almost asleep before we were able to finish up bandages changes. I found it interesting that he was too tired to fight and I was able to break a blister on his chest and drain it without any fussing. He would not have let me do that quietly had he been awake.

He does have a very raw foot. It looks bad and he is very sensitive to anyone going near it. It doesn't seem to slow him down much but I'm hoping it starts to heal soon.

The kids have been outside playing in the snow. The temps are nice today (25 degrees is nice for January in MN). Tomorrow is the big freeze with 5 degrees being the high. Tomorrow is also back to school day as they all have the day off today.

Dad and AJ

AJ in his sled (Thanks Emily for the soft, sweet hat)

AJ's cousin AS on our backyard play fort

AJ and AS play in the snow

Thanks for following us on our journey. I'm anticipating a good week.

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.