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We're considering submitting our homestudy for a girl we found through the state photolisting. She is 4 and has the following diagnosis: West Syndrome, Static Encephalopathy, cortical blindness, and Hydrocephalus.
I'm looking for parents who have dealt with these issues and wonder what I'm looking ahead towards? Prognosis, daily care, how it will affect our daily lives, etc. She's an adorable little girl, and I can't help but think she needs a loving home.
Thanks for any input!:thanks:
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I haven't had to deal with the any of the seizure or brain disorders but I have limited experience with hydrocephalus and a lot of experience with blindness.Hydrocephalus you should be most concerned on what damage was caused to the brain before the shunt was placed or during placement. It could range from no damage to sever.Blindness. I would say it really depends on her level of function. With the disorders you stated that could be just anywhere. She could be so low functioning as to not need much care at all to high enough functioning that you will get to learn braille with her.Have you met her and interacted with her yet? Did they state how she is functioning, meeting mile stones and such?
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West syndrome is a severe epilepsy syndrome, with a poor prognosis. The majority of children with it will have severe mental retardation, often with psychiatric or behavioral problems as well. The seizures tend to be very difficult to control with medications. This sounds like a very high needs little girl, unfortunately,who would likely need a lot of care for life. Best of luck with your decision.
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