To see some earlier videos of Neavey posted on YouTube go to the following links:
Standing during physical therapy - January, '07
Happy in chair - September, '07
Playing with Keith and laughing - October, '07
...a mix of laughs, smiles, thoughts and trials from Neavey's days...
CHECK IT OUT- from Amherst Alumni magazine
Neavey's diagnosis or lack thereof...
Her neurologist would tell you she has cryptogenic generalized epilepsy. It's not so much a diagnosis but a state or a condition. What does it mean? Neavey has complex partial seizures and generalized seizures. They originate generally in any part of the brain. And the kicker is...we don't know why she has them, or why we can't control them completely.
And it would seem they have no relationship to her severe developmental delays which include no receptive or expressive language. She cannot take care of herself in any way. Once upon a time (when she was a normally developing 3 month old- sans the seizures that started at that time) her father (Karl) and I were told that she would most likely grow out of it by age 5. If you're new to Neavey's story, her father and I are divorced. Although I wish I had her with me more of the time we do have a 50/50 joint custody arrangement.
No one can explain why Neavey is but I know what she is. She's the love of our life. We want to share her with any part of the world that can bear it. So, we will always bathe her, and feed her, stretch her legs, fix her hair, soothe her after big scary seizures, and a zillion other things... but most of all we will love her.
And it would seem they have no relationship to her severe developmental delays which include no receptive or expressive language. She cannot take care of herself in any way. Once upon a time (when she was a normally developing 3 month old- sans the seizures that started at that time) her father (Karl) and I were told that she would most likely grow out of it by age 5. If you're new to Neavey's story, her father and I are divorced. Although I wish I had her with me more of the time we do have a 50/50 joint custody arrangement.
No one can explain why Neavey is but I know what she is. She's the love of our life. We want to share her with any part of the world that can bear it. So, we will always bathe her, and feed her, stretch her legs, fix her hair, soothe her after big scary seizures, and a zillion other things... but most of all we will love her.
1 comment:
I have met "informally" through my daughter Sarah, Neavey and her amazing parents. Neavey is the most beautiful little girl and when I look in to those gorgeous eyes, I see a tiny glimpse of heaven disguised as a child. I see why Sarah speaks so lovingly of Kelly, Keith and Neavey. Anyone who gets to see a few moments of Neavey's life, even if only in pictures is deeply blest. Thank you so much for kindly allowing others to share a moment of such an awesome little girl. I am so truly blest to have been allowed "in" for a short visit with video. May God gently hold, Linda Cheshire
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