Sunday, October 4, 2015

What The Neurosurgeons Had To Say

 There are many days in a person's life that are so important that the details seem etched in one's mind: graduating from college, a wedding day, having a baby, etc.  For me September 4, 2015 was also a much anticipated potentially life changing day.  It's already been a month but still it feels like yesterday.  It was the day when we would finally learn if our precious Evangeline would undergo decompression surgery on her brain.  Six weeks earlier we had learned that Eva had a chiari one malformation in the back of her brain.

When we learned of Eva's diagnosis I was completely blown away.  Of course I knew when she had her first MRI that her Gastroenterologist was looking to rule out chiari.  I thought that it was more of a routine test and honestly it didn't occur to me that they might actually find what they were looking for.  I thought that perhaps Eva had some serious food allergies or possibly celiac disease which might account for the reason she appeared to dislike eating.

The day Eva was diagnosed we met with our pediatrician but she was unwilling to speculate as to what the future would hold for Eva.  Having to wait six long weeks brought so much more anxiety on my part as we prepared for the appointment.  I tried to rest in God's goodness those six weeks leading up to the appointment but there were times when I just felt like a bundle of nerves waiting to explode.

Walking into the appointment we really didn't know what the neurosurgeons were going to say.  I do think that Brandon and I were fairly realistic in the fact that there was a real chance that they would recommend surgery.  We were so confidant that she might have the surgery that we even moved up the date for Eli to begin Kindergarten so that we could take off two weeks from school following Eva's surgery.

The 24 hours leading up to the appointment I honestly tried not to say much.  I was so scared that I feared I might be short with someone or say things I would later regret.  When the day of the appointment came for a few moments I wondered if I could go through with it.  I almost panicked.  For almost six weeks I had checked each day off my calendar with eager anticipation knowing that I was one day closer to finding out more about Eva's condition.  Now that the day of the appointment dawned near I just didn't know if I could go through with it.  Could I really bear to meet with the neurosurgeons and have them tell me that my little girl needed surgery?  On her brain?

Thankfully I didn't have to!  You see both neurosurgeons decided to take a let's wait and see approach.  Words really can't describe what it feels like to have a 200 pound load lifted from your back.  A big part of me wanted to rip open the window and yell for joy as my heart was filled with incredible thankfulness.  I felt so blessed at the Lord's kindness in giving Eva two wonderful neurosurgeons at one of the finest children's hospitals in America.  They did a phenomenal job answering ALL of our many questions and showed true compassion.

The plan is for Eva to have another sedated MRI and a follow up appointment in six months.  She has also been given some lifetime restrictions from anything where there is a potential of her falling or shaking her head.  These types of things include all contact sports, gymnastics, trampolines, roller coasters, and yes sadly horseback riding.  I don't know if I am more saddened by the last restriction or Eva's Aunt Bekah who lives and breathes horses.  Still our hearts are incredibly thankful.  Thankful that for now Eva won't be having brain surgery.  At the same time we realize that every week a child at the same hospital does undergo the exact surgery we feared so much.

Our feeding therapy (Speech Therapy & Occupational Therapy) continues and we look forward to the day when Eva will eat what is typical for her age.  As for now our hearts can only say,

"O Lord, our Lord how majestic is your name in all the earth." Psalm 8:9


  1. I feel your relief, Amanda, and yet my heart hurts for you as well. Having seen my husband go through something similar, I know the anxiety well, but I can't imagine facing it with a child. My prayers are with you. Keep me posted. Hugs...

    1. Thank you for your sweet words which I read a long time ago and never took the time to reply to. Thank you so much for praying for us.

  2. Well written my sweet friend. It makes me want to start a blog, it must be so life giving to pen those words sometimes. I am thankful to get to walk with you through parts of this journey. Praying for sweet and adorable Eva!

  3. And...that comment is from Emily, now sure why I am "unknown". Maybe I shouldn't blog, I am obviously not into the whole technological savvy thing!

    1. Ha, ha. I'd love for you to start a blog now that I know who you are! :)