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Cane Lessons

Both Cecilia and Lilly started Cane Lessons in January. We have been so fortunate to have a wonderful TVI (teacher of the visually impaired) to teach them braille, and now mobility. I got to watch them have their first Cane lesson in the outdoors yesterday. They have only been working inside up until now. I was so impressed with them! They are learning blindfolded right now, because they still have too much of their sight that it would be pointless for them to do it sighted. But, it is so important for them to learn this skill now, before they are blind and loose more cognitive abilities. They were so proud of themselves too. They love having something tangible that speaks to their uni

Seizures, Spit Tests, & Bracelets

At the end of February, we met our neurologist, Dr. Walleigh. She was great, and has worked with Batten kids before. We also confirmed that Lilly is having absence seizures. She has started medication already. They will both have an EEG and an MRI over spring break. The fun part: The EEG is a sleep deprived EEG. They are only allowed to sleep for 4 hours the night before. This should be fun! The girls are excited to stay up late, go to a movie, eat pie, and go bowling. Then get up early, have hot chocolate and go to Walmart to shop for a new toy at 5AM. Mom and dad are drawing straws to see who gets which shift. On Tuesday, the rest of the family spit into tubes and they were shippe

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© 2020 by Rare Sisters Batten Foundation

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PO BOX 746561

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