Grateful For This New Normal

“Since these episodes aren’t seizures, that means Lola hasn’t had a clinical seizure since she was a baby,” I said to my husband last night. He agreed and we both sat silent for a minute. Just let that sink in. No clinical seizures in more than five years. How incredibly lucky we are to be able to say those very words. We say clinical meaning seizures that are actually visible. A past EEG showed her to be having subclinical seizures as she was sleeping, but the last two EEGs did not detect those subclinicals. What is most fascinating is that we have no idea what a clinical seizure would even look like, if Lola were to have one. The type of seizures she had as a baby were...
Continue reading...

School’s Out for Summer!

Another school year has come and gone. It feels like just yesterday we were getting Lola ready for her first day back to school and now here she is ready to move on to a pre-k/kindergarten class. That thought in itself is enough to send me into a blubbering pool of tears, but I’m so very proud of how far she’s come this year. She continues to make such progress each and every day and I can’t thank her support system at the Indiana School for the Blind and Visually Impaired (ISBVI) enough for all they’ve done to foster her development. She had Mrs. Tubbs again this year and now that’s all we hear at night, “Tubbs! Tubbs!” It’s really sweet because clearly Mrs. Tubbs has had an...
Continue reading...

Let’s Ride, Lola!

You may remember Lola was competing in Friendship Circle’s Great Bike Giveaway for the chance to win a Rifton adaptive bike. Unfortunately she didn’t win a bike through the voting portion of the contest, but because she had at least 100 votes (she actually had over 1200!) she still had a chance to win a bike through the raffle…and she won! We were elated with joy because the outpour of support Lola received from family members, friends, neighbors and even complete strangers was simply astounding. She had so many people rallying behind her to win this bike because they knew the impact it would have on her life. We can’t express our gratitude enough for helping make this dream come true for our daughter. She now has the...
Continue reading...

Here’s Why I Hate You, Seizures

I feel your presence. I know when you are lurking in the background. You are waiting for your opportunity. You wait until a moment when her body is vulnerable, when she is tired, when she is ready to let the world fall at the wayside as she drifts off to sleep. You have her all figured out and yet we know little about you. Except we know when you are coming. Your aura shows itself in two obvious ways. Some days you seem like you are trying so hard to breakthrough that she is literally coming unglued by the tiniest hint of your existence. She is hard to calm. She screams. She hits herself out of frustration. Her behaviors make her father and me prepare. We are extra...
Continue reading...

Lola Needs Your Help!

Dear Friends of Say Hola Lola, One year ago, someone told me about Friendship Circle’s Great Bike Giveaway because she thought Lola would be a good candidate to win an adaptive bike. Well at that time Lola was so close to being able to push the pedals of her small Radio Flyer tricycle that I honestly didn’t think she would need an adaptive bike. I let the idea go. Yet here we are one year later and, unfortunately, Lola still doesn’t have the hang of pedaling a bike. She needs help. She needs help that can only be given to her through the use of an adaptive bike. At school she has an opportunity to ride an adaptive bike which she loves and is able to do so...
Continue reading...