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New updates
Firstly, I want to express my gratitude to everyone who has kept Jordan in their thoughts and prayers. It's been a while since I could say we're finally noticing some positive changes. On August 27, 2025, Jordan underwent a partial corpus callosotomy. During the 10-hour procedure, his incredible team successfully disconnected the anterior section of his corpus callosum using laser ablation. Jordan's recovery has been remarkable. Jordan faced quite a challenge as he worked to 
Stefanie Cybulski
Oct 172 min read


Big updates, brain surgery.
I haven't updated this blog since 2023, and revisiting the posts evokes a mix of emotions. I feel sad because, back then, there was still...
Stefanie Cybulski
Jun 272 min read


Infantile Spasms Awareness Week
December 1-7 is Infantile Spasms awareness week. Ironically, Jordan was born during IS week and we didn’t even know it. Part of my brain...
Stefanie Cybulski
Dec 1, 20233 min read


Cincinnati One Month Later
Its been a month since we made our first trip to Cincinnati. Over the past four weeks we’ve titrated Jordan back up on Vigabatrin and...
Stefanie Cybulski
Oct 13, 20232 min read
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