Eva's Upcoming Mri & Neurosurgery Appt

The week I've been dreading most for the past 6 months is finally here.  It's the week that our sweet Evangeline will undergo another (sedated) mri and meet with her pediatric neurosurgeons.  In so many ways it feels like many of the emotions I experienced in August and early September are back in full force.  For those of you who may not know, Evangeline has a chiari one malformation in her brain.  It was discovered last July after she began experiencing feeding difficulties and no longer growing at a consistent rate.  A chiari one malformation is when the brain (cerebellum) goes down below the base of the skull and into the upper spinal canal.  

Last fall when Evangeline met with the neurosurgeons I really thought that they were going to recommend surgery.  I was surprised when they said they wanted to wait six months to see how Eva would progress with feeding therapy.  Those six months have passed and now here we are preparing for a week of intense appointments.   While we hope and pray that the neurosurgeons will not find a reason for Eva to undergo decompression surgery we really don't know for sure.  (I think being so wrong about what I thought would happen last time makes me unsettled about this week's visit.)  While I am incredibly thankful for Children's Hospital this is still hard.  We are hopeful that Evangeline's doctors will continue with a "let's just monitor" the situation attitude we don't have assurance of that fact.

I've tried to spend the past few weeks preparing by spending time in God's Word and focusing on the truths of God's goodness.  If you are a member of my local church you might also notice that many of my song selections on the piano the past few weeks have centered on that fact.  Today I played an arrangement of "Great Is Thy Faithfulness" at church.  The arrangement was nice but the real reason I chose that song was so that I could daily be reminded of the Lord's faithfulness as I practiced.  Let the beautiful words by Thomas Chisholm assure you of the great love and faithfulness of a great God.

Great is thy faithfulness, O God my Father;

there is no shadow of turning with thee;

thou changest not, thy compassions, they fail not;

as thou hast been thou forever will be.

Refrain:

Great is thy faithfulness! Great is thy faithfulness!

Morning by morning new mercies I see;

all I have needed thy hand hath provided;

great is thy faithfulness, Lord, unto me!

Summer and winter and springtime and harvest,

sun, moon and stars in their courses above

join with all nature in manifold witness

to thy great faithfulness, mercy and love. Refrain.

Pardon for sin and a peace that endureth

thy own dear presence to cheer and to guide;

strength for today and bright hope for tomorrow,

blessings all mine, with ten thousand beside! Refrain.

It's really crazy to think how much one little word "chiari" has impacted our family since last summer.  My world felt like it was completely turned upside down.  Even now it is something that is daily on my mind.  No matter what happens this week I know that the fact that Evangeline has a chiari one malformation will forever shape our family's story.  I don't think you can go through something like this and it not impact your family in a huge way.  No amount of reading or studying can prepare you for what it really feels like when you learn something is wrong inside your child's brain.  

Just like my original post here about learning about Evangeline's chiari, we continue to covet your prayers.  Please join us in praying for our sweet Eva and for complete healing of her brain.  We have been so encouraged as we have witnessed the incredible strides that she has made in her feeding therapy.  Praise the Lord for the great progress that we have seen so far.

We will never fully understand why the Lord has decided to send chiari into our lives in the midst of a difficult season of life.  What we do know is that no matter what the outcome from this week God is still God and He is still on the throne.  For now we choose to take refuge in Christ.

"But let all who take refuge in you rejoice; 

let them sing for joy,

and spread your protection over them,

that those who love your name may exult in you."

Psalm 5:11

You might also enjoy reading the following posts about Evangeline's chiari:
My Daughter Has Chiari
What The Neurosurgeon Had To Say