Lydia’s Optic Nerve Hypoplasia Blog

8-5-08

August 6th, 2008

We are having a great summer!  We went to Florida so Lydia could experience the beach. I had been promising her to go for the last year, finally when summer school let out we set off for St Pete Beach. She is such a good traveler. She had a good time experiencing the ocean,making sandcastles with mom and granny, learning to dogpaddle in the pool.  She has also been busy travelling to visit lots of family this summer.  There seems to not be enought Lydia to go around- everyone wants to be near her!

Lydia had a vision test today called a Visual Evoked Response.  She had to sit in a chair with electrodes(sensors) hooked up to her head  to measure her brain and nerve response to visual information and watch a television screen. She got to wear a pirate patch over her eye, even said “Arg!!”   The screen she watched looked like a black and white checkerboard that changed or reversed the black/white squares so it appeared to be moving. I could barely watch it myself-nauseating!!  They put the screen at about 5 feet away then almost in front of her face.  I didn’t get to see the computer screen but the tech doing the test said the closer one was “producing some measureable adn reproducable waves”. Of course he cannot interpret any findings, we will have to wait a week or so to find out the results, the neurologist will have to read and interpret the test first.  Lydia did well with the test, only got upset because she thought she would have to wear a sticker patch over her eye – had to do that at the other doctors office in St Louis the last time she had it over a year ago.  After she figure out nothing would hurt she was just fine, almost fell asleep.  Our appointment lasted about 1 1/2 hours.  I will let you all know the results when I know next week.  She has an appointment on Thursday where they will sedate her and dilate her eyes, take pictures of the head of the optic nerve and compare previous pictures.

Thank you all for your continued support and prayers. I will keep you updated!!

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