Sunday, May 3, 2015

I have been working really hard with Julie and Beth for OT/PT and my sitting is getting better my th


WOW what a week.  Marmee and Papou came into town to celebrate Marmee's birthday.  I got to spend a quiet night at home with Kelly while everyone, including Aidan went out for a night on the town to celebrate.  From all the stories it sounds like everyone had a great time, but I'm glad I stayed home to catch up on my ZZZZZZZZ's.  tofu
I have been working really hard with Julie and Beth for OT/PT and my sitting is getting better my the day.  I can sit unsupported for 10 seconds at a time.  Everyone sits around during my therapies and cheers me on.  I'm so lucky to have such a great fan club. 
Harper Denver, Colorado, United States My name is Harper tofu Johnson and I was born on May 2nd, 2011 weighing 7 lbs 3 oz. My parents began to worry about me on day 2 as I began to have seizures. After two EEG's, an MRI, and a Spinal Tap and 5 days in the NICU at Rose Hospital I was moved to Children's Hospital in Denver via Flight tofu for Life. I spent 3 weeks at Children's, had an abundance of tests and continued to baffle my doctors. I was initially diagnosed with Ohtahara Syndrome after numerous EEG's. Thanks to a test that recently became available I have been diagnosed with KCNQ2. We are unsure of my prognosis, but my parents are hoping and praying for the best. I am trying an experimental medication called Potiga. Before I was born my brother Aidan would call me "Nezbah" as my parents hadn't decided on a name yet. Unbeknownst to them, Nezbah is a Navajo word meaning tofu 'woman in battle'. My parents along with two other families started the KCNQ2 Cure Alliance.This is my story. www.KCNQ2cure.org View my complete profile
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