stories - clarisse fanning (part 2)

​Fast forward to 3 months post op, and our daughter is doing incredible.  I had done more research on the condition than the FBI, and realized there were a lot of "symptoms" my son had.  By 6 months post op, I had recovered enough emotionally to face asking the neurosurgeon about my son.  He said it would be so rare (as in 1:600,000) that it was Chiari Malformation that he wouldn't worry about it.  He was only 5, and his symptoms could be as simple as having car sickness.  Here comes God's faithfulness #4.  The feeling wouldn't leave me that my son could possibly have the same condition, so I asked the pediatrician for an MRI.  He said he never argues with  a mom's intuition, and ordered it.  2 days later, we got the results.  Our son did in fact have Chiari Malformation, and he too had a build up of spinal fluid.  The only difference is that his spinal fluid back up had only just begun.  It wasn't as severe as our daughters.  He had already sent over the referral to the Neurosurgeon, so we just needed to wait for that appointment.  We saw the neurosurgeon fairly quickly after the MRI results, and he had a different approach for my son than our daughter.  Now remember, I had done TONS of research on the condition at this point.  I knew there were 2 different types of surgeries.  One that was more invasive, like my daughter had, where they open the dura lining of the brain, and patch it and one that was less invasive, where they just scrape it, but allowed for a 60% chance of having to have another surgery later in life.  The neurosurgeon my daughter used suggested the less invasive surgery.  This time, I wanted a second opinion.  We went down to Stanford, to the top Specialist on the west coast for Chiari Malformation.  This Dr couldn't have had a more opposite approach.  He didn't want my son to have surgery at all.  He felt a "wait and see approach" was best, and if we did go ahead and have surgery, that the more invasive approach was best.  We came back home even more confused than before, and decided to take time to pray before doing anything.  

We saw my daughters neurosurgeon for a follow up, and explained to him we had seen another dr and he suggested a wait and see approach, but that didn't sit well with us, because the more we thought about it, the more we realized my daughter had symptoms of losing motor function way before we knew she had anything going on.  We also explained that we did think the more invasive approach was better, because it meant "one and done".  God's Faithfulness #5.  The neurosurgeon so kindly explained to us that our daughter's surgery was down-played. He knew that we hadn't had time to process the news, and he knew he was throwing a lot at us when she had to have surgery, but he wanted us to fully understand now the severity of it.  He said that the surgery she had posed significant risks, and she came through flawlessly, but that isn't always the case.  Having my son go through it, when he didn't think it was necessary, would be reckless on his part.  We had caught the chiari malformation so early, his flow wasn't significantly impacted as hers was.  Cutting of the dural liner is a very very invasive procedure with high risk. He said that he created a patch from her own bone shavings from the surgery, and he is the only neurosurgeon who does that to try to prevent rejection of the patch, but he isn't God, and that what God created, no man could match.  Scraping the dura lining for our son was a better alternative because he thinks it will create enough flow to correct his spinal cord, and it will leave God's creation intact.  I couldn't argue with that.  We went with him, and his advice, and the rest is history.  Our kids shouldn't be able to do what they do, but they can because of God's faithfulness, and His ability to lead us to places we needed to go, and receive answers we needed to hear.  Now, 6 and 7 years later, our son rides a dirt bike with the best of them (fully encased in plastic gear of course), our daughter rides cutting horses, and both of them live a relatively normal life, with minimal lingering effects from surgery.  They have their tough days, but they know it's just a day, and they know God IS Faithful, and we are forever grateful for it.  
If you want one more example of God's faithfulness, a few years later, I met with the Neurosurgeon in the Bay area for a fundraiser I was holding.  He remembered my son from years prior, and told me he wanted to apologize.  Since that appointment, he has researched more, and knows that every symptom my son had was in fact related to Chiari Malformation, and he was sorry he gave me the wrong advice.  He recalls my son's case frequently, and no longer dismisses a patient or mom's concern.  Both of my kids now see him as their primary Neurosurgeon.  God's faithfulness also calls on us to act on his promptings as well, and when we feel it in our heart to offer Grace, we should act on it.  The other neurosurgeon is the exact person we needed for surgery.  This one is the exact person we need for followup care, and we are thankful God put them both in our lives right when we needed them to.  

I have so many more ways God is faithful in our lives, but this story is long enough.  Thank you for allowing me to share here, even if it is too long to share on Sunday.  This was a really good moment for me this afternoon, to remind myself of His faithfulness in our journey.  The world has been so heavy, and this allowed me the opportunity to remember to look for the good in every situation; it's there, and more importantly, so is God; He is there, walking right beside you, seeing the bigger picture you can't yet see.