Brave Little Warriors Blog

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

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...

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...

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...

They always say it pays to know someone. That has never been more true. Matt has a friend who’s sister in law is a neurologist at...

Jordan had his last steroid treatment last Wednesday. After two weeks of 40mg and 60mg prednisolone we ended it early. Thank God because...

Yesterday was the Inaugural Brave Little Warriors Golf Tournament at Buffalo Tournament Club. I want to thank all of our 104 golfers who...

Jordan was brought in for another long term monitoring (LTM) on Tuesday and we’re still here and will be staying another night....

Arguably, they’re probably pretty on par. ACTH is the acronym for adrenocorticotropic hormone. Its the first line treatment for infantile...

This is going to be a long one… February 18, 2023 was the first time we took Jordan to the ER for infantile spasms. Jordan had just...