Sweet Amelia
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Our sweet little girl, Amelia, was born with Tay-Sachs disease. Tay-Sachs is a neurological metabolic disorder that's degenerative, progressive, and fatal. Amelia is 22 months old and has a 5 year-old big sister, Madeline. We live in the San Francisco bay area.

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  TUESDAY, AUGUST 26, 2008 09:18 AM, PDT
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The first week of kindergarten went really well. Maddie likes seeing her friends and playing, but she thinks the day is too long, and she said she starts to want me around lunchtime. It’s only four hours, but four hours five days a week is a lot more time away from mom than preschool was. She already seems to be adjusting more this week. It was also the best week I’ve had emotionally in a long time. It felt really good to focus on the normal fears and worries that parents have – sending your first child to kindergarten, as opposed to the usual anxieties, anger, and sadness that I have as a parent. It’s also really good to be on a set schedule. We had too much down time over the summer – too much time to reflect on life.

Amelia is doing the same, which is good. With the Atropine drops, Reglan, and using the suction machine everyday, her secretions are under control. She’s still having a lot of seizures, and her neurologist has been on vacation this month. She returns this week, so I’ll have her prescribe another seizure medicine.
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EMAIL AUTHOR
sarahpalford@yahoo.com

HOSPITAL INFORMATION
Kaiser Permanente
Oakland, CA
United States