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My Story

Lexi's Journal about Deep Brain Stimulation for Kernicterus

(background info is at the link below)



Lexi has a neurological condition called kernicterus as a result of very high bilirubin (jaundice) in the days and weeks after her birth almost 7 years ago. She is extremely smart but can't yet sit up, walk, talk, or hold anything in her hands unaided. We are pursuing deep brain stimulation (DBS) at the Medical College of Virginia in Richmond. If she turns out to be a candidate for the operation, Lexi will be the first child with kernicterus to have this procedure. Since it is experimental for her condition we have no idea what to expect from the surgery including what benefits we may see. We are keeping this diary to keep friends, family, and other families with children with this condition informed about Lexi and the trials and tribulations surrounding DBS for children with neurological conditions.

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Susan Haas posted a new journal entry, "Of Surgery, Pain and Thankfulness.".

By the time you are reading this, we will be home and, hopefully, Lexi will be pain-free. Today, however, I am holed up in a hotel room at the Newark airport, watching her ... Read more

Diane Combis signed Lexi's Guestbook.

Sending love and prayers to Lexi and all of wonderful family! Can't wait to hear more about "Lexi's song".... Please give Lexi a big hug from Ms. Diane !!  Read more

kelly jones signed Lexi's Guestbook.

Hi Lexi!  Jordyn just left to go rehearse and be a part of your "Lexi's Song" video.  You are an adorable, amazing little girl.  Just wanted to say hey and to ... Read more

Enoch michael signed Lexi's Guestbook.

Hey Punkin, You keep smiling and gettin strong,you have so many awesome/good/great things coming your way.You just wait and see.I look forward to reading about your ... Read more

Diane Combis signed Lexi's Guestbook.

Lexi, This is Ms Diane. I am sorry I have not been able to see you in so long. I pray and think of you often.  I hope your trip to FL was amazing and all is going well ... Read more

Maria Smithson signed Lexi's Guestbook.

Greetings Lexi!  I met you tonight at Whole Foods.  I was with my friend Ross, who is the boyfriend of my oldest daughter (Molly).  We chatted with your Dad a bit while ... Read more

Janet Kerry signed Lexi's Guestbook.

We love you, Lexi, and wish we lived closer to you. Love, Aunt Janet and Uncle Tim. Read more

Angel Cole signed Lexi's Guestbook.

Lexi, You are a bright and brave young lady. My youngest granddaughter Raven was born jaundiced and I believe has some behavioral issues due to it. Raven like you  is ... Read more

Jan Chubb signed Lexi's Guestbook.

I hope that today is a better day for all of you.  Can't imagine how difficult all of this must be and am just praying for you that you have a window of progress open ... Read more

Bill Russman signed Lexi's Guestbook.

Thank you for the update-I am glad Lexi is getting better!  Never doubt you are doing the right thing for her and, as a parent, I understand your heartache.  My prayers ... Read more

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