the journey of a butterfly

khaliah's journey with sjs/ten


The Butterfly Blog

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I hope you enjoy reading about my journey and learn more information about SJS/TEN.  


Update #48, 2/24/14 10:14 pm

By Khaliah, Apr 5 2014 02:38AM

This update will be short because I'm about to head home to get some rest. Today was a pretty good day for Khaliah Shaw. She did have one seizure, but luckily it was while the Neurologist was with her. They still think it's related to coming off the meds and didn't think it was epileptic, but will do some further assessment and tests. The only thing keeping her from moving to Step Down is the seizures. She is back on a full diet and doesn't seem to be having any trouble with her food. We even celebrated Valentine's Day and she had a few pieces of chocolate.

She was in great spirits, being the Princess K that we all know and love. She's resting now, so I'm going to try and get some sleep myself. Still praying for these seizure to stop completely and that this is not something she's going to have to deal with going forward. It's just a trip what these medications do to us. I know they help us too, but man. They can surely cause a LOT of problems! #teamkhaliah #mybutterfly #Godisable #Godblessmybutterfly

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