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.
Last year Coleman got me a Nook for Mother's Day... Pre-mother's Day, actually, since I was still pregnant. It came in very handy for both of us (Coleman hijacked it for a while) while Lewis was in the NICU. This year, I had breakfast in bed and a day full of fun with my two favorite men. I love my Nook, but it just doesn't compare ;)
Some pictures from our fun day at the Dutch Village:
Someone get this kid some sunglasses!
Coleman got weighed to make sure he didn't have hollow bones which would mean he was a warlock. In case you were wondering, he's not. The scale said he weighed 135. The dutchman: "uhh... that's not official." Yeah no kidding.
Lewis finished up his first intensive Feldenkrais session this past week. He went four days in a row and I think it really paid off. I made a couple videos of some of the changes I've seen in Lewis, I'd love for you to watch them and see if you can see the changes too. I have to warn you that the changes are VERY subtle, but they are SO IMPORTANT. These are the small details that he will build on and use to crawl and walk.
So, the first video is basically clips of Lewis army crawling and trying to rock back and forth. Pay close attention to Lewis's back, how he arches and rounds it, how his pelvis tilts, and how much his legs are involved in his movements.
Before, his body (and specifically his back) moved as a log and his legs just drug behind him. Now, his spine can twist and his pelvis can tilt and his legs play a more active role in his movements. He still has a ways go to, but these changes are huge for Lewis.
The next movie is clips of Lewis reaching. Notice what parts of his body are involved when he reaches above him.
At first, Lewis used only his arm to reach above him. It got the job done. But look how, in the second part, he uses his arm, his neck, his back, and even his pelvis, to reach above him. He can reach so much higher! This may not seem like a big deal, but it will help Lewis so much to be able to effectively use every muscle he can. Think how much easier he'll be able to 4-point crawl if he can twist his spine, tilt his pelvis, and use his entire back to move his arm forward, instead of just using his arm.
I know it doesn't look like much, but these are building blocks for Lewis. I'm so excited to be able to share Lewis's hard work and progress with all of you.
In the beginning it was how Lewis and I bonded. It was how Lewis went from being the baby I visited in the hospital to MY baby. Later on, it was our time to spend some time relaxing. And, towards the end, when my little baby became a boy on the move, it was a way to keep him still so I could snuggle and pretend he's not growing up way too fast.
Sure, nursing was inconvenient at times, I couldn't be away from Lewis for more than a few hours at a time. But it was 100% worth it and I wouldn't trade it for the world.
And then he just stopped. I saw it coming for a few weeks. He dropped a feeding every few days... he'd just refuse. The only one left was first thing in the morning. And then it was gone. And I'm one sad mommy :(
All this is taking us one step closer to the big day... Somebody's got a birthday coming up and it CANNOT be my itty bitty newborn baby, can it??
It feels like Lewis has a new trick every day. He's been giving kisses for a while now. At first I had no idea why he was banging his face against my face with his mouth wide open, but I finally figured out he was giving me kisses! I don't even know why I wear makeup anymore because he kisses it off my entire face by the end of the day. I love it! We snapped a few pictures over the weekend while we were doing yardwork and Lewis was playing in the yard. I wanted some smiles but Lewis had other plans...