Henry’s Story

Site created on September 16, 2022

Welcome to our CaringBridge website.
For over a year Henry has been suffering from sudden headaches, dizziness, fatigue, nausea/vomiting, lack of coordination, and mental fog. With much persistence from Fred and I we finally reached a provider who was willing to listen and pursue further imaging.
On September 13th Henry was diagnosed with Chiari Malformation. Due to the severity and progression the only option is surgery for relief of his symptoms and prevention of further spinal cord damage.
He will have neurosurgery on September 29th which will essentially enlarge the lower part of his skull to house his cerebellum adequately. We always knew he had “big brains”! We have been overwhelmed with support but are struggling to navigate messages and calls in a timely fashion. We hope to use this site to provide updates to our friends and loved ones. We appreciate your continued support and words of hope and encouragement for Henry. If you would like to leave messages we will share with Henry as he embarks on this journey.

Newest Update

Journal entry by Amy Mendus

Our sweet Henry is HoMe!!! We are beyond relieved and thankful for his surgeon Dr Grabb and all the wonderful nurses and staff on 4w at Children’s Mercy❤️ We have quite the rode ahead of us but knowing he has such incredible love and support from all of you make the load a little more bearable. He is still having trouble with nausea but much improved from the previous couple days. He is back to being ornery and chatty 🥴 . If I’m being honest, spending over 120 straight hours locked in a hospital room together was actually enjoyable in a way. We had some rough moments, some tears, some fears, but way more laughs then I could have imagined. He is genuinely the coolest kid I know, and by far more brave then ever expected. Fred and I haven’t seen him laugh and smile as much as we have the past couple days despite feeling crummy. He is an inspiration to us and we feel beyond blessed right now. We can’t wait to see what the future holds for Henry….he hasn’t known what “normal” feels like for quite some time. 
One of the funniest Henry quotes from the weekend….(back story, his wifi wasn’t working on his phone but our’s was)…. “Just look at you over there, sitting on your high horse with your hotspot…”….add some Valium induced slurs 😂🤣 
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