the journey of a butterfly

khaliah's journey with sjs/ten

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The Butterfly Blog

Welcome to my blog!  

 

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

 

Update #49, 2/26/14 11:33pm

By Khaliah, Apr 5 2014 02:39AM

Khaliah Shaw is doing great! Each day, I see the physical changes and she's getting better and better. She was able to sit up in the chair and feed herself today. PT had her get up and walk down the hall a few times. Of course, she was dancing! For the most part, she's in good spirits. She does have her moments though. No seizures since Monday, thank God!


I'm SO tired, so I'm not going to write a lot tonight. I hadn't had time to write anything for the last day or so because Princess K has me up running! I'm working during the day, then I come and spend time with her until she goes to sleep at night. At first, I had to help her eat, help her get comfortable, get the nurse, go get her popsicles, etc.., but now, she's beginning be able to do some things for herself. Of course, the nurses do a lot of that too, but they can't be with her 24/7. I think I'll hire her a personal assistant to do all the things she needs! LOL, I'm kidding, but it is work trying to keep her happy!


I hope to have her website up soon. I really haven't had time to work on that either.


She's had a few of her friends stop by. Of course, she really enjoys that. She still gets tired easily, so I have to make sure she doesn't overdo it.


But I'm happy to say that she's good. I see her improving every day. The only reason she's still in ICU is because of the seizures. Once they get that under control, she can be moved to Step Down.


Hopefully, the trach will be out by next week. Then it will be her getting stronger and her skin continuing to heal. Her eyes and vision is improving every day.


Ok, I'm exhausted. Will try to update again tomorrow. If not, just know that everything is fine. #teamkhaliah #mybutterfly #Godisgood

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