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mommy4sofia 
1:41am, November 7, 2009
Helpless, frustrated, angry, this is how I feel about Myasthenia gravis.... My baby Sofia was diagnosed with occular myasthenia gravis sept 22, 2009. Since then we have been living with fear of what may come next. Until today it had only affected her eye lids. Today we notice her smile more and more crooked. Her upper lip does not move when she smiles and the left side of her lower lip also does not move. It break my heart to see her smile go because her laugh and her smile kept because her droopy eye lids make her look tired. We don't know too much about this disease and we don't know just how much it's going to affect her, that's the frustrating part. Watching her go through all this makes me feel helpless because I don't know how to make it better. Watching her beautiful eyes slowely close as the day goes by makes me sad..............
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This disease is affecting everyone. My husband and I are short with eachother. Sometimes I just don't feel any support from him. I know he is busy with school as well but I am feeling very lonely and scared... Sofia was herself this weekend! Happy most of the time..cranky and tired sometimes..but for the most part just being Sofia!
mommy4sofia