This blog tells the story of our family, specifically our journey with a child with a rare neuromuscular disease. It is our prayer that our story will bring you encouragement and community.
Date Reported: 9/4/2014 Age: 12 yrs. Weight: Mestinon: 60 mg 4-5 times daily Melatonin: 3 mg 1 X nightly Albuterol: None General Health: General weakness, especially in the eyes. Large muscle fatigue when activity is prolonged or in high heat. Ky is easily fatigued during the school day. She has some accomodations in class when needed. (shortened assignments, more time to complete, etc.) Ky also does not participate in games in PE that require quick reflexes or reactions. Ky has aches and pains in her joints, specifically ankles and knees after a full day at school or a lot of walking.
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