Suck, swallow, breathe

I've had so many thoughts about how I would begin this blog, what I would write.  Really good blogs have formed in my head, but I've had to set them aside to focus on making the next Dr.'s appointment, calling the physical therapist, logging in to work.  You would think that such grand ideas would stay in your head until you can get them down.  Apparently that's not the case.  And since we've been dealing with our son's Spinal Muscular Atrophy for a couple of months now, it doesn't make sense to go back and drum up those old mental blogs.  So I'll just start at today. 


Tummy time was the first of many clues that we didn't catch.

A few months back, we used to joke about the fact that Dylan hated tummy time.  He'd cry for a few minutes, lay in his drool without lifting his head or propping up on his arms, and eventually fall asleep.  We'd share our concern, and no one seemed fazed--many told us their child never did tummy time and was JUST FINE.  And he seemed normal in every other way, at that point. 

So, we enjoyed the quiet respite his tummy naps provided and talked adoringly about how stubborn he was, and made trite jokes about which genetic pool contributed to that trait. Ha ha ha ha.  We're all so stubborn.  Isn't that cute?  (Seems like everybody claims stubbornness--it's a socially admirable trait.  But is everyone really that stubborn?) I even posted a photo of him face-down on Facebook.

Well, now we know why he wasn't pushing up on his arms.  We also know why he didn't bring his toes up to his mouth.  And why he seemed to struggle with feeding.  And why he was constipated most of the time. Every seemingly disparate issue he had was connected to his SMA. 

We don't think about most of these activities and what they draw from our bodies.  I certainly didn't.  But all of them require substantial muscle movement that Dylan struggles to support because of a severe deficit in a crucial protein--because of his SMA.  Just think of feeding.  The speech therapist who sees Dylan said to me yesterday, "Just think about how much it takes to suck, swallow, breathe.  Suck, swallow, breathe.  Suck, swallow, breathe.  That's hard work."  She's right.  I watched the X-ray of Dylan sucking, swallowing and breathing, and I felt like I was watching a lumberjack hack away at a redwood with every bit of his strength. 

However, Dylan's big smiles--often after good poops, like normal babies--remind me that it's not so hard that he can't enjoy his success with these things.  He can watch Chuggington wide-eyed. giggle at Daddy's whiskers on his little soft feet, smile at Colin and me at the dinner table, and play with his spoon--and even put it in his mouth. He can push buttons and play with light toys.  And he's not too weak to crab at us when he wants to be moved, or wants more baby food, or doesn't want to play with a certain toy anymore.  So, it turns out that he really is stubborn. 

I think he takes after all of us.