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Our daughter Gracie turns 6 years old today. 4 years after learning of her diagnosis of a spontaneous mutation of her GRIN1 gene we are not where we expected to be with her progress and it's very hard to cope with. Even though we truly know she has come a long way cognitively, she still cannot sit up, walk, feed or talk much at all. We don't sit around harping on what she can't do, we do focus on what she can do, but now turning 6 it's hard not to sit back and look at the big picture that it's been 4 years and we had hope for more progress. This year alone has been even harder, just last month her first surgery to put in a feeding tube. Coming later in the year a 2nd and more major surgery to fix her hip dysplasia. It's so hard on both of us to handle emotionally.
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