Thursday, May 19, 2011

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.

8 comments:

  1. Oh Lauren, I'm sitting here crying as I read this. I'm so sorry that you got that news. You are so right, Spina Bifida SUCKs and I hate it too. We are always waiting for the other shoe to drop, but always still trying to soak up all those baby moments. I sat through our early on appointment this afternoon thinking to myself "why us? Why do we have to spend this extra time, when all I really want to do is love my baby up that I have not seen al day". I'm sending big hugs to you tonight!! One of the good things about this Spina Bifida thing is, it brougt you and Lewis into our lives and for that I am very grateful!! See you Wednesday. It will be a much neded night for us Mommies.

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  2. Lauren,
    Thank you for sharing so honestly about your appointment and your emotions about it all. I am so sorry to hear that your MRI brought more questions instead of answers. I often, like you, forget our boys have SB as we read each other's stories, chat about what they are eating, and see pictures of their addictive smiles. But, one little (or not so little) test and/or visit from a specialist is much more of a reminder of reality than we would like. Like always you, and Lewis, will be in my thoughts and prayers. If you need to be sad about it tonight - I get it - and believe me, I am sad with you. We can do this thing. Together.

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  3. Oh Lauren, I'm sad for you. I'm reading your post and have to re-read it because it's hard to read through the tears. You are such a great mom and I admire and respect you so much. Lewis is so so lucky to have you. :) and so are we (your SB moms) :) Much love and many prayers for you guys!!

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  4. Oh Lauren, you took the words right out of my mouth! It's incredibly hard when there's so much uncertainty and it's frustrating because even though we do our best there are so many things that are simply out of our control.
    There's going to be more tough days in store for us, but also amazing days ahead. And those amazing days are even more significant and incredible because of the tough ones we have overcome!
    Thank you for writing with such honesty. Your family, as always, is in our prayers.

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  5. Lauren, I am sad that you are going through this and I wish I could give you a hug. No you are not a whiner(quite the opposite actually) Through these posts you have allowed us to get to know Lewis even from such a distance, and to understand SB a tiny bit. Together we have rejoiced and have given praises to God when he has reached a new goal or crossed another hurdle. Tonight we quietly pray to Him that Christ comfort and strengthen you as you guys go through these tough days. Thank you for sharing your heart and being real in all of this. You guys are in our prayers
    Aunt Mary

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  6. Oh, hun. :( You know we've gone through the same thing - the MRI with the surprise about the Chiari and the syrinx, the decompression and the detethering. I too, honestly thought that they'd call after the MRI and say that Kingsley was such a rockstar, the SB was irrelevant. We're all dreamers, aren't we? Somehow that keeps us sane on the normal days. Anyway, I wish I could say something that will encourage you. The good news is: He's doing great right now. Kingsley was rapidly declining with his functioning by the time we found out and he never got that back. That was terrifying and I STILL wonder What If we had known about the syrinx earlier. You will never have to worry about that because you're already informed and you're watching. The other good thing is that even IF he does end up going down the same path as King did, I can tell you that it's going to be okay. Kingsley is doing better now than ever and he's still laughing like the whole thing was no big deal. I don't stress about it anymore, life has gone back to normal and as of right now my boy is doing just fine. If more happens, well, I know it will suck but we'll get through.

    Big hugs. Go ahead and be sad, be mad, rage about how unfair this is. It is. But Lewis is a rockstar and so are you, so it will be okay.

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  7. Prayers for you guys. He is a beautiful boy. Our sweet Palmer is almost 6 months old and I have a hard time not worrying about the future all the tine :) Sending love and prayers your way.
    Angie

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  8. For you Lauren, Coleman, Lewis, and all the other strong hearts in your time of need:

    "Divine Love always has met and always will meet every human need." Mary Baker Eddy - 1903

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