Raquel has Recessive Dystrophic Epidermolysis Bullosa (a painful blistering disorder) or simply, EB. We are a small family unit within a large caring and supportive community of friends, family and health care professionals that are doing their best to keep Raquel as comfortable and growing till we can beat EB.
Tuesday, October 9, 2012
EB kid does crazy stunt
Cordelia clearly must suffer through all the activities I work her through as she gets kicks to the solar-plexus while remaining unguarded doing the wheelbarrel. Raquel doesn't fair any better despite having a blistering disease where any friction produces blisters, as little thought was given to have her walk face down across the floor. Any slip or lack of strength and it's smeared skin for certain.
Maybe the thought more importantly not contemplated was the possible hand pressures not previously tested???
I did layer the blankets but, there were no guarantees.....