Emmie’s NF Journey

Emmie is our eighth child.  When she was three months old she was diagnosed with Neurofibromatosis Type 1.  She had 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 (kyphosis).  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.  After some issues with the kyphosis in August 2015, she had a procedure to place a halo brace and was in traction for six days.  She had spinal fusion surgery in February 2016 and is getting close to having the brace removed.


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

A Whole Lotta-June 2015 An update on all things Emmie-Feet, Weight, Bracing, Neurology

Running-My thoughts on this marathon

Brace Yourselves-Emmie gets an indestructible brace.  We think.

All of a Sudden-August 2015 Part 1, new bracing, new plan to attack the kyphosis

Halo Procedure-August 2015 Part 2, Emmie placed in a halo with traction for six days

With a Little Help-August 2015 Part 3, Our inadequate thank you for the care and love we have received so far.

What Next?-All the logistics for the next few months.

Updates-Um, updates on the brace (and adoption)

Getting Real-The plans for spinal surgery coming up in February 2016

The Countdown Begins-Surgery is scheduled.

Leave a Reply

Your email address will not be published. Required fields are marked *