A Halt, But We’re Moving Forward

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Last Tuesday Lola had her 24 hour video EEG at Riley Hospital for Children. You may remember, Lola had one last year as well so unfortunately we were no strangers to this long procedure. The hope in monitoring Lola’s brain activity was to help give us the reassurance we needed to start a wean off of her anti-seizure medication, Trileptal. Yet sadly, we did not get the news we had hoped for this time around. Last year, Lola was having abnormal spikes in her brain which we were told could potentially lead to seizures. Per the suggestion of her neurologist, Dr. Zimmer, we decided to keep her on the Trileptal for another year just to be safe. Her body was doing a slow wean anyways due to her...
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Celebrating Me is Celebrating Being Lola’s Mom

For me, Mother’s Day began on Saturday this year as I was scheduled to work on Sunday. Really, I feel like it’s Mother’s Day every day as my wonderful husband is always sure to make me feel special no matter if it is a holiday or not. Saturday felt like a crisp fall day rather than teetering on the edge of spring. It was chilly and the cloud cover left the sunshine to remain a mystery. Regardless, we bundled up and headed to town to join in on the festivities at Celebrate Irvington Day. The tiny streets were lined up with artists, local businesses and everyone in between. There was a craft sale going on which is where you could find me a good chunk of the morning....
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Absorbing the Moment

Last week, I asked Rob to help Lola and me get our bike combo set up. And no…Lola does not simply sit on the back of my bike as I am way too clumsy to have her on my own bike. Instead, she sits safely in a little bike trailer with the makeshift windows open and she has all of her favorite toys that make an immense amount of sound letting people know…hey – we’re coming through. Since we now live in a new neighborhood, I wanted to go on an adventure and explore. We found a bike path and just kept going straight. We biked past streams and ducks, mothers walking with their children in strollers and couples holding hands simply enjoying the outdoors just like us....
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The Neurogeneticist

“Amazing!” “Fantastic!” “Lucky!” These were among the promising words the neurogeneticist said to us on Friday as he discussed Lola’s undiagnosed condition. I remember asking Rob on Thursday (the night before the appointment) if he felt worried about what we’d find out. And ever so calmly, he said he didn’t feel worried at all and he just thought this was something that just happened to Lola. Oddly enough, I too, didn’t feel as worried as my normal worrying self would have usually felt. I just kept telling myself as long as it’s not terminal and as long as it’s not a degenerative disease than I can handle just about anything. And thankfully…oh thankfully…the doctor said just that “I don’t think she has a life threatening illness or some...
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Right When You Least Expect It

Two nights ago, it had seemed like any other typical night. Rob was working on the computer as Lola and I practiced talking, making noises and just settling down before bed. Lola’s crib is still in our room which is clearly an issue I probably should address someday soon, but that’s a whole other blog post. Anyway, her crib is at the end of our bed and her new obsession is to bang her pacifier on the crib while sitting on the bed. She likes to look over into the crib and she gets crazy irate when she drops her paci in it because, unlike before, she can actually see her paci now. So as I watching Dancing With the Stars (one of my few guilty pleasures on...
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