Xavier ’s Story

Site created on February 10, 2021

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Keely Keenom

Catch up time 
Part 4! 
We are home after that scary moment where he could of died in my arms!! 😭 

So this is December 2019. December 11th was also one of the scariest days of my life! He had a febrile seizure. That last a long time. He had stopped breathing for a little bit and was shaking soo bad. I have a video.. but you don’t want to watch it. Every time he had a seizure we “had” to go to the hospital just for them to send us home. I hated it.. so after they told us that it was ok after these seizures, we didn’t go to the hospital anymore. It took a year before we ever got to see a neurologist. 🙄 oh I forgot when Xavier turned one he didn’t need the thickener anymore. He was doing good with no aspiration!! 

At this point we are seeing 
  • Pulmonologist 
  • Cardiologist 
  • ENT
  • Audiologist 
  • Speech Therapy
  • Occupational therapy 
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