Walking to Conquer Chiari

Before G was born, we knew she had the encephalocele and hydrocephalus.  The other significant diagnosis that we weren't aware of until after her birth was a Chiari Malformation.  I remember in the NICU the neonatologist giving us this news when she was one day old after having an MRI, and then later a nurse asking me what type she had.  I'm pretty sure I gave her a blank stare while thinking, "There are different kinds?".  As we soon learned, there are four different types.  Gianna has type III - here's the description from the National Institute of Health:

"Type III is the most serious form of CM. The cerebellum and brain stem protrude, or herniate, through the foramen magnum and into the spinal cord. Part of the brain’s fourth ventricle, a cavity that connects with the upper parts of the brain and circulates CSF, may also protrude through the hole and into the spinal cord. In rare instances, the herniated cerebellar tissue can enter an occipital encephalocele, a pouch-like structure that protrudes out of the back of the head or the neck and contains brain matter. The covering of the brain or spinal cord can also protrude through an abnormal opening in the back or skull. Type III causes severe neurological defects."

To be perfectly honest, I remember feeling sick and overwhelmed the first time I read that after G's birth.  Those aren't words anyone ever wants to read about their child.  I'm not sure I even processed any of the middle sentences - the first and last lines got me.  But here we are almost a year later, ready to celebrate Gianna's birthday, and we're so amazed and thankful on a daily basis at how well our happy sweet girl is doing!

Here's a basic illustration from the Conquer Chiari website.  Their motto is "From Knowledge, Strength. Through Research, Hope" - I like that.   So, basically the cerebellum protrudes out of the skull, crowding the spinal cord, and causing a constellation of symptoms including headaches, dizziness, fatigue, muscle weakness, difficulty swallowing, pain, anxiety, ....too many to list. 

So fast-forward to this weekend and our first "Conquer Chiari" walk as a family.  The walk is held all over the country on the same day to raise both awareness of and funding for the cure of Chiari Malformations.  Gianna's baptism picture is included on the Conquer Pediatric Chiari website. 

On the Riverwalk in Louisville for the Conquer Chiari event.  A beautiful day to honor our beautiful little girl!




Matt and I did all the walking, so I'm not sure why the boys wound up with the treats!

 

 

We're planning to make the walk an annual family event.  I'm already planning our "Team GiGi" t-shirts for next year!