I hate Spina Bifida

Really it should be, I hate Spina Bifida #1, because I'm sure there will be plenty more...

Some days I forget about Spina Bifida. I mean I never really truly forget about it. I take Lewis to appointments and work on therapy with him at home. But I've gotten so used to it, it's just a normal part of our life. What would we do if we didn't have to do all that?? I was starting to live in peace with Spina Bifida. I still hated it, but we had come to sort of a mutual agreement. I ignored it and it sat in silence. I was ok with that. I'd read poems and stories and I would think, this isn't all that bad.

Then some days I remember. Lewis has Spina Bifida. And it doesn't just mean he might not be able to walk. I can handle that. It also means scary things.

Lewis had an MRI last week. It was his first MRI and will serve as a baseline for future MRIs. We went in Wednesday to discuss the results with Lewis's neurosurgeon and didn't exactly get the news we were hoping for. I was prepared for the worst but secretly I was hoping for him to say, "This is amazing! I've never seen such a perfect brain and spine! I can barely believe he has Spina Bifida!" Yeah... wishful thinking. Anyway, Lewis has Arnold Chiari II Malformation. We knew that. It goes along with the SB. Basically the back of his brain is being pulled down into his spinal column. His goes down to about the C3 vertebrae. That's far. Lewis also has something called a syrinx. A syrinx is an accumulation of fluid on the spine, kind of like hydrocephalus but on the spine. It can be caused by a tethered cord, Chiari, or a number of other things. We don't know what's causing Lewis's. It's  in the thoracic area of his spine and represents a significant cross-section of his spinal cord.

So what does this mean? For now, they lowered the setting on his shunt. He was on the highest setting but they bumped it down one to see if that would shrink the syrinx. Since this is his first MRI, we don't know how long it's been there or how fast it's growing. Lewis will go back for another MRI in six months to see if it has changed at all. If it's gotten bigger, he'll probably need surgery- most likely either a decompression surgery (they'll remove the top few vertebrae and a portion of the back of the skull to relieve the pressure on the back of the brain) or a detethering (they'll go into his initial repair site on his back and remove scar tissue that is keeping his spinal cord from swinging freely... the problem is the surgery just creates MORE scar tissue so it's a vicious cycle). Lewis isn't currently having any symptoms that we know of from the syrinx or Chiari malformation. It's a tough call, though, because he can't tell us if he's getting numbness or tingling in his legs. He can't tell us if he has a headache. I find myself analyzing everything he's doing. Is he banging his head? No, he's being a goofball and trying to play the piano with his nose. I so wish I could enjoy all those little goofy things without wondering if it's a symptom I need to catch.

I want to ignore all of this and close my eyes and make it go away. But I've tried, it won't go away. I realize that there are a lot worse things than this and I don't want to come off as a whiner. I'm really not a whiner! But every time  I sit in a doctor's office and I can just see in their face that they don't have good news it brings me right back to that day and I feel the EXACT same emotions.

Tomorrow I will get up and I will play with my baby. I will clean up his messes, I will try to get him to do the sign for "more" instead of whining and wildly waving his arms, I will read him books, I will tickle him, life will go on and I'll enjoy every minute of it. I won't feel sorry for Lewis or myself. But for just one night, I need a little time to be a little sad. And that's ok.