Talking to Johns Hopkins Epilepsy Center

Last Friday I finally got a hold of the Johns Hopkins Epilepsy Center and discussed our going to Baltimore for a consult regarding the hemisperectomy. I learned alot about their approach from the coordinator. They firmly believe that the younger the better and apparently they feel comfortable performing the surgery on very small infants. Our sense is that they have alot more experience with small babies than does Boston’s Children’s. They don’t do emergency hemispherectomies and their waiting list is about 3 months long. They have quite a network set up with many support families that have been through this before and even reunions every three years. We set an appointment for early November. Other news is that our part-time Nanny (Mary) quit over the weekend and our friend Alida has been helping us out in the meantime. She loves Ella which is very nice. Ella’s been great these past few days. Very alert and sweet, especially in the evenings. She is smiling alot and longer. Plus, she becoming more and more vocal with much cooing, sighing and groaning. She almost sings!

This entry was posted on Wednesday, October 17th, 2001 at 11:56 am and is filed under Ella's Log. You can follow any responses to this entry through the RSS 2.0 feed. Responses are currently closed, but you can trackback from your own site.

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