As many of you know, our sweet Eleanor has Dravet Syndrome. People always ask how is doing, so here’s a little update.
Eleanor loves everyone she meets. Get ready for a hug, and if you’re lucky, a sloppy smooch! She loves to climb and has no fear when it comes to that. When we are at work, she spends her time with her bestie, Katie. Katie has been a lifesaver to us and is one of Eleanor’s favorite people. Eleanor is lucky to receive Speech, Physical, and Occupational Therapies each week to help her learn and grow. She’s making lots of gains! We can’t wait for the day when she will be able to tell us, “I love you” in one way or another. It’s hard to believe she’ll start preschool this summer! We have a great team supporting our sweet girl.
She has seizures about once every 4-10 days. I’m so happy to say that our hospital bag is collecting dust behind the door…We are so thankful that we haven’t had to go to the hospital for a prolonged seizure since last February. Over a YEAR without a hospital stay!! (KNOCK. ON. WOOD.) We continue to work with her neurologist at Mayo and local doctors to try and reduce the frequency of her seizures. A lot of people ask if Eleanor will grow out of her seizures… unfortunately, she won’t, but there’s some amazing research happening right now that could help to change that someday! The Dravet Syndrome Foundation is an amazing organization that supports families like ours but also helps to fund research that may someday help our girl live a seizure-free life. This March, they are asking people to #giveupyourcup. For one day, week, month, or anything in between, you can give up your cup of coffee, tea, or other drink and donate those funds to the Dravet Syndrome Foundation. If you’d like to give up a cup for Eleanor, please click on the link below. Thank you in advance to those who can support our sweet girl. ?
