Please pray

Please pray for our poor baby. Back in the hospital as she had her first convulsive seizure and a six minute window of hypoxemia. I just don’t understand why she can’t catch a break and why she can’t just be a kid. My heart is breaking for her. I would do anything to trade places […]

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Fuck epilepsy

If this poor kid could go longer than 1 week between hospital stays, that would be great. I sincerely mean it when I say, fuck epilepsy.😭😭😭😭 #LennynStrong

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Feeling better

The bug is back (kinda) in business. Looks like the fatigue from her last seizure has finally run it’s course and we haven’t had any regression, this time, thank God. Increased meds, an additional medication, and much closer eyes on her from Neurology for now. Fingers crossed we get these seizures under control because she […]

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Sigh…

Lennyn had a massive seizure again today. It’s about the 6th seizure this month. Forever grateful for Ava. She is literally the best sister and caregiver on the planet. She recognized a focal seizure and got my Dad to help administer rescue meds because Seth and I were not home, all while getting Lennyn hooked […]

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🧠

Huge shout out to the best dad in the world, bringing Lennyn to her 6 hour EEG today! Fingers crossed seizures have chilled the eff out. #LennynStrong

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:(

Another long and scary day with the bug. Happy to be home 😕

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Sheep.

Seth and I went to the Hard Rock tonight, to celebrate the closing of a big chapter of our lives. As we were walking out, some asshole walked up on us, trying to provoke and snickered, “you going to comply when they try to take our guns away, too?!”. Literally have never been heckled for […]

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3!

Wishing this special, little, girl the happiest of birthdays. Lennyn has given us access to the most magical world and has changed who we are, and our lives, forever. She is the poster child of resilience and beating the odds and we are so proud of all the strides she continues to make. It’s far […]

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