This is a blog about the joys of raising Sophia. It is intended to be REAL, inspiring, and shed light on the experience of having a terminal child. I hope that our experience will help people in one way or another. I could have never imagined having a terminal baby with special needs. The news was devastating. But there is joy in this journey. And life lessons to be learned. God knows us, individually, and he blesses each of of our lives daily. THIS, IS SOPHIA'S STORY...
Wednesday, June 28, 2017
Bad day with dystonia :-(
Sophie had a pretty hard day :-( until tonight she only slept about 40 min all day :-( she has these uncontrollable jerky movements. It's neurological :-( makes it really hard for her to sleep sometimes :-( I've heard a bunch of different terms for it. I've heard dystonia, chorea, kinesia, athetosis, and encephalopathy. It all pretty much means abnormal movements that she can't control because of abnormal brain function :-( poor girl :-( today I am grateful for a host of numerable people. Professionals, friends and family helping me help her :-) she is sleeping peacefully now and smiling in her sleep :-)
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