Why Lola Won’t Be Going to School This Year

Today is the first day of school for kids going to the Indiana School for the Blind and Visually Impaired (ISBVI). Lola would normally be waking up at 5:45 a.m. I’d be trying to get her to eat a little something before her long ride to ISBVI. She’d wait patiently outside, knowing the bus would be coming to pick her up soon. She’d ride with her friends and listen contently as her bus driver, Terri, and bus monitor, Toshua, sang to her. She’d be greeted at ISBVI by familiar faces and welcoming voices. She’d know she was back to her pre-summer routine. But today Lola is sleeping in. We will still rush around because nothing is more chaotic than corralling two young kids in the morning. We will...
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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...
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Well, That’s Surprising News

It’ll be two years in August since Lola showed her first sign of a clinical seizure — at least we thought it was a seizure. We had just left the dentist’s office and Lola was still recovering from the trauma of the appointment. I noticed her exhibiting some very strange behavior through my rear-view mirror. She hadn’t had a seizure in a couple of years, but like any parent of a child with epilepsy, I was always prepared for when that seizure-free streak could end. I pulled over and immediately began to videotape the episode which you will see below. I sent it on to Lola’s neurologist and while she wasn’t fully convinced it was a seizure, rather than having Lola endure yet another EEG, we put her...
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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...
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Come Stroll Down Memory Lane – A Birthday Post

Warning! Plethora of pictures! I’m almost a month late with the Lola birthday post, but that seems to be the story of my life lately. Lola turned five-years-old on January 4th and I’m still pinching myself with disbelief! I’ve had so many emotions with this birthday and I can’t seem to figure out why. There’s something about five that says she’s well on her way to school dances, shaving her legs, screaming “I hate you” and everything else teenage-related. All right so I’m getting a bit ahead of myself, but she’s getting bigger which scares the hell out of me yet makes me look forward to all of the good stuff that’s just right around the corner. Five years ago, I was afraid for her future. I didn’t...
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