If you remember my post about ROHHAD children you will remember seeing a small blurb on Nikki B from Australia. Since then I have been in contact with her mom, Karen. I can't even explain what it's like to be able to connect and talk with all of these moms. I am so happy that everyone has reached out and are keeping in touch.I have a few updates on Nikki. As of today, Nikki has been in the hospital for 16 weeks with the doctors still trying to figure out ROHHAD. Nikki is sometimes allowed home with her nurse for a couple hours in the week but usually her family has to visit her in the hospital. Currently the doctors have not given an exact date of when Nikki will be able to go home but they are saying POSSIBLY after the new year. Karen told me to day that Nikki will be allowed to come home for lunch on Christmas day so they are super busy getting the house and her room set up for her visit. They have also been working on Nikki's Christmas in the hospital and making angels to put all over her room.
I hope to soon get Nikki's complete ROHHAD story and will share it with all of you. Above is a picture of Nikki and her mom, Karen. Thank you so much for sending your photo to us!Please keep Nikki in your thoughts and prayers and may she come home to her family soon!
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