Friday, January 9, 2009
For all of you that follow our blog, or just happen to come across it by chance I want to ask each and every one of you to say a few extra prayers for one little baby. Most everyone knows I work in a pediatricians office, and for the most part we have healthy babies. We have one in particular baby, I'll call him baby E who has a rare genetic disease called Epidermolysis Bullosa (EB for short). His disorder causes blistering and shearing of the skin from even gentle friction. Sometimes just snaps and seams on a sleeper can cause these awful blisters. Baby E is 4 months old and his entire body is covered with these horrible blisters. Daily care for him is like that of a burn patient and he has to wear special dressings that is very time consuming. He has 2 big sisters and a mother that is very involved in his care. Babies with EB are often described to have skin like butterfly wings, its that delicate! There is a Dr. in Cincinnati that treats some forms of it so it is in the works to get him there and maybe some possible comfort measures and treatments. Right now he's being followed closely by Dr. Boyd and specialist Dr.'s in Roanoke. We have all fallen in love w/ Baby E and want to do anything we can to help him. I'm asking all of you that when you say your prayers to say one for him because we all know that our God is the one who can make him the most comfortable and lay his hands around his little body.