...a mix of laughs, smiles, thoughts and trials from Neavey's days...
Monday, September 28, 2009
Home Again - Home Again
Heading home on Saturday - Goodbyes to nurses
Saturday night set up with suction machine that my mom( the airway pro and RN supreme) helped me acquire. And Oh did the hospital bed that Mr. Jason gave Neavey years ago come in handy.
Monday - Not ready for school yet, but happy with balloons (from one of the publishers that Keith works with) that had met us at home upon our return.
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.
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