MRI Results

I went in "prepared" today. Not only did I have my trusty notebook full of pertinent questions, I had also steeled my nerves for the "frank discussion" that I knew pediatric neurosurgeons are famous for giving. I was ready for him to tell me all she "couldn't do". I had my heart and emotions and my will hardened- ready to internally disagree with the man. I would smile somberly and nod on the outside at the tale of woe he would spin. Inside I would channel that defiant, silent, angry spirit I possessed as a girl...and remind  myself that despite what he "knew",  he was dead wrong! He didn't know her. He didn't know what my daughter would be able to do!

I had myself ready for the worst.  Aaaand.....it didn't come. Its kind of like walking into a movie that has had too much hype, only to realize that the best/worst parts of the movie were all in the "previews". The doc was not nearly as negative about her condition as I'd feared, nor did the MRI find deep dark secrets hidden from the previous ultrasounds. I had worried that the MRI might reveal that she did in fact have some of the other conditions associated with spina bifida: clubbed feet, agenesis of the corpus collosum, scoliosis, the list goes on and on. But nothing new was discovered. We weren't smacked in the face with any new, scary words.  At the end of the appointment, I smiled. A real, honest, smile. God said she would be fine and fine is what it appears she'll be.

Below, I will detail what the report said:

1) "Evidence of sacral spinal defect as seen within the lower sacral region with herniation of CSF across the bony defect:" This means, we are BACK TO THINKING ITS SACRAL.  If this is true...she will walk!  The doctor was very positive about this. She may have some bowel and bladder issues as those are controlled by sacral nerves, but the severity of these issues varies from case to case. It doesn't appear that all her nerves are involved in the protruding sack.
2)"Within the posterior fossa, there is no definite evidence of effacement of the foramen magnum to suggest herniated tonsils". I'll confess that I wondered what the H^$#% they were looking at her tonsils for. But then I googled the terms and matched it up to the "conclusion" section of the report and realized that this means they did not find any definite evidence for hindbrain herniation AKA chiari malformation. So, at the moment her Chiari is...dare I say it?  Not exactly there!!!!!!  I get that this is a technicality, but the amount of herniation is what defines Chiari.  More than bananas and lemons and all that, the amount of herniation tells you how bad the chiari is (1,2 or 3). Right now, she doesn't even have a 1!  How cool is that?
3) "Within the brain there is no evidence of midline shift, no evidence of hemorrhage or extra axial masses. The corpus callosum is partially seen."  Well all that stuff about midline shift is good and them being able to partly see the corpus callosum means its THERE, lol which is good. All this adds up to mean she doesn't have any other visible brain malformations which often accompany SB/Chiari.
4) "No evidence of hydrocephalis". That one speaks for itsself. Her vents are still small and the doc informed us that in cases like hers the need for a shunt is reduced from 80% to 40%.  I thought BJ would hug the man!
5) "The cord terminates below L1 suggesting a tethered cord". This may mean another back surgery for her at some point. Depending on how tethered it is, (the cord is supposed to be hanging free at the bottom) it can cause her pain and worsening of symptoms. It will be something we watch for, but when surgery is warranted, its done and no further damage results.

So, all in all, I'm in awe of what is happening now. I feel blessed and lucky and happy. I have held something in my heart this whole time. Something that has helped to keep me strong at every appointment. Something that will continue to keep me strong in the future.  I want to share it now.

Once upon a time, late at night, back when all this first started, I was laying in my bed, tears on my face, my heart aching and I poured out my fears to God. When I paused from talking to him, I could feel him speak back.  He didn't say much. It was a whisper,  "She'll be fine".  and then he showed me a picture of his big hands, linked together and folded over like in prayer. Those big hands of His shrunk down to fit neatly over my tiny daughters spine. "She'll be fine". I cannot tell you how many times those simple words have echoed in my ears. I heard them again today when we left the office and headed to the elevators and I smiled till people must have wondered exactly what kind of idiot I was. All this time I have believed those words from Him without any "evidence" of their truth.  Now I hold my first bit of that evidence in the form of a flimsy piece of paper containing the MRI report. Soon, I will hold my Evangeline and I will see the truth of those words burn full force. She will be just "fine" regardless of what is said or not said about her condition.

Do not fear for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you. Surely I will uphold you with my righteous right hand. Isaiah 41:10