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 caused an abnormal “c” bend (kyphosis). She had surgery on April 29th, 2015 to debulk the tumor pressing on her spine. 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. Her halo brace was removed in March 2016 and she wore a neck brace until June 2016.
In December of that year, she was diagnosed with scoliosis and began wearing a Boston brace in February 2017. She moved to a Rigo brace in 2018 and her scoliosis is still there but stable.
In October 2018, she was diagnosed with Moyamoya disease a rare but sometimes seen complication in people with NF. Her left middle cerebral artery was almost completely closed. We praise God that the moyamoya vessels worked to keep her from stroking until surgery in November 2018.
Unrelated to NF, Emmie also has amblyopia/strabismus in her right eye but it is corrected with bifocal glasses. The cutest four year old in glasses ever!
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.
The First-Emmie’s Spinal Fusion Surgery. We recently learned that she was the youngest child with NF to have cervical spinal fusion.
Hospital Days-Part 1-Emmie’s recovery after her surgery.
Hospital Days-Part 2-More pictures of recovery.
25 Days-The countdown until halo removal.
Super Ems and Her Sidekicks-My bestie got some great pictures of our family supporting our super hero.
Hey Hey Hey Goodbye!-Emmie’s halo is removed after eight months!
NF Awareness Day 2016-Our second NF Awareness Day and my thoughts and reflections on it.
First Bath-Emmie’s first bath in nine months!
And Action-After her halo was removed she became completely unstoppable in hitting her milestones.
Meet UGGHH!-Emmie’s neck/shoulder/chest plexiform is introduced.
On a Roller Coaster-Where we learn there is a second plexiform (now named Sophia) and scoliosis.
The Good, The Bad, and the Ugly-Scoliosis Update
Number 9 and Brace Yourselves…Again-Emmie’s 9th MRI revealed narrowing of arteries in the brain.
Number 10 and Fighting On-Emmie’s 10th MRI included a view of her blood vessels to see what’s going on.
On the Edge-Prepping for another surgery. This time across the country.
Lessons from a Superhero-What I’ve learned in the past four years with our hero.
Super Ems Flies-Emmie’s trip to California in pictures.
MRI #11-and her first angiogram
Surgery Day-Moyamoya surgery, indirect bypass on the left side.
MRI # 12-Emmie’s 12th MRI and our last day in California for six months.
Neuro Adventures-Emmie had a great check up with her neurologist in January 2019