Friday, July 20, 2012

Summer 2012 Update

I am THRILLED to report that we have had no seizures in the last 8 weeks, Praise God!!! While Amanda had a bit of a roller coaster spring as she gained lost and regained seizure control, these last two months seizure free have been amazing! It is such a gift to be able to relax and enjoy Amanda and her silly antics without the threat of seizures. During these two seizure free months, Amanda has also weaned totally off of Keppra and onto a drug called Banzel. The Keppra seemed to have lost its effectiveness after almost 6 years and the neurologist also felt that some of her behaviors (biting, pinching, etc) would lessen if we took her off Keppra. While we haven't seen a significant decrease in behaviors yet, she is working hard to have gentle hands etc. Amanda has also really taken off intellectually and physically. I think the VNS surgery in November plus her new meds have opened up a whole new world to her. Her tutor from last summer is working with her again this summer and she couldn't believe the change in Amanda in one year. Amanda can count, add, subtract, identify colors, animals, letters, certain words, etc. Amanda has wonderful math skills so her tutor is focusing more on reading comprehension over the summer. They have a great time together and Amanda truly loves her. Amanda also has a wonderful CAP worker who is as much a teacher as anyone. Traci is great with Amanda and they giggle most of the day as they work on writing the alphabet, reading stories, playing games etc. Amanda is working hard to walk independently. She is consistently walking anywhere from 5-11 steps independently without loosing her balance. She is a determined little girl (actually not so little anymore lol) and I am confident she will master walking in the next couple of years. It has been a good summer with lots of horse time, beach time, and R&R and we look forward to a few more weeks of fun before the excitement of school, therapies, and work come rushing back. I hope you and yours are having a great summer! God Bless!