Emmie is our eighth child. When she was three months old she was diagnosed with Neurofibromatosis Type 1. She's been growing normally with no real outward complications except for a plexiform neurofibroma (benign tumor) growing on her neck. A March 2015 MRI revealed a tumor pressing on her spine in her neck (cervical spine). That combined with her head pressing down has caused an abnormal 'c' bend. She had surgery on April 29th to debulk the tumor pressing on her spine. We'll find out in June if the surgery was successful.
Here is a collection of updates from Emmie's journey, and ours, with Neurofibromatosis Type 1. I'll try and keep this updated with posts and updates so it's easy to follow.
Starting at the beginning...when we announced the official diagnosis.
What We Know-August 2014
Breathing Easier-October 2014
February and March Update-2015
More March Updates-2015
Kyphosis, Neck Brace, and Waiting-March 2015
No Words-April 2015 Waiting on Surgery Date
Reality-April 2015 First Surgery to Debulk Plexiform Neurofibroma Scheduled
Super Heroes Unite-April 2015 Surgery Day and Recovery
NF Fighter Update #2-April 2015 What's Next
To the Bat Cave-May 2015 In which we praise God for medical professionals who think outside the box.
I Know a Fighter-May 2015 My thoughts on being a sidekick and NF Awareness Day
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