The reason we posted this picture of Reid was to show what is behind his bandages and the pain he deals with daily. When we post the pictures and videos of him laughing and smiling it is because even though he is in so much pain he still finds a reason to smile and laugh which is amazing. God defiantly watches over him and will continue to guide our family through making his quality of life better. I must also address someone’s post about popping the blisters before they get bigger. Reid has one on the worst types of this disease. He undergoes painful dressing changes daily in which blisters are popped and then washed with either bleach or vinegar to prevent infection. He wears four layers of bandages and stays medicated by narcotics to control his pain. Even though he gets his bandages changed daily, his skin doesn’t produce any collagen 7 which is like glue holding the skin together so there is nothing to stop the blisters from getting bigger. When I have to stick my child with needles daily and have him look at me with the greatest despair it breaks my heart. Then to poor bleach on those open wounds is pure torture even though he is medicated. I am his mother, I am suppose to help comfort him not cause him pain but it is a necessary evil so that these blisters don’t turn into huge open wounds or that he doesn’t get an infection again which he has already had twice. I have seen posts like this before that have criticized others methods of caring for these precious children. However, just like cancer has stages EB has many different subtypes which makes every case different. I appreciate the kind words of support and the continued prayers for Reid. These children are the strongest people I know please help find a cure and #stopEB
Posted on: Wed, 01 Oct 2014 00:39:36 +0000
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