Thursday, June 14, 2012

One week and no infection

Today marks one week from AJ's surgery.  So far no infection and I am so thankful.  The doctor said that for a healthy child the open wound would take a week to heal up.  We are not sure what that means for AJ.  Today his wound does not visually look as deep but it still needs to be packed.  I also don't know what it will look like when the wound is filled because I am not sure how the skin will grow over it.  It's a wait and see.  We have plans to attend Bible camp in a few more weeks and I am hoping that AJ's wound will be closed. It will allow him to swim in a little pool and stay cool while we are outside.

We had some really good news.  AJ will be getting a cooling vest.  You can look at the vest here:  Cooling Vest.  It will allow AJ to be outside more in the summer time heat.  When the temperature is over 76 degrees, he blisters, his skin acts like wet tissue paper and he is pretty uncomfortable.  The cooling vest hold a temperature of 59 degrees for about 2 1/2 hours.  We will have an extra set of cooling packs so that it will last even longer.  AJ's dermotologist prescribed the cooling vest but his insurance rejected the request and denied our appeal.  Thankfully we were able to order the vest through the Butterfly Fund.  They are a non- profit organization that is set up to assist children and families that live with EB.  What a great organization and we are so blessed to be helped by them.  If anyone is looking for a way to assist those with EB, this would be a great place to start. Just click on the link above.  As soon as AJ's receives the vest, we will take some pictures and show it to you.

We have really appreciated your prayers and we rejoice in God's goodness to AJ.  We are praying that his wound will continue to heal without any problems.

Psalm 17:6-8

I call upon you, for you will answer me, O God;
incline your ear to me; hear my words.
Wondrously show your steadfast love,
O Savior of those who seek refuge 
from their adversaries at your right hand.
Keep me as the apple of your eye;
hide me in the shadow of your wings.

Our hope is not in AJ's health, a cure for EB, or in the satisfaction that is sought for in this life.  Rather we can say;

Psalm 17:14-15

O Lord, from men of the world whose portion is in this life.  
You fill their womb with treasure;
they are satisfied with children, 
and they leave their abundance to their infants.  
As for me, I shall behold your face in righteousness;
 when I awake, I shall be satisfied with your likeness.  

Our hope is in God and we daily find our satisfaction in Him.


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