MRI

I've been procrastinating on updating caringbridge.  I am getting increasingly annoyed by the cumbersome nature of the revamped version of CB.  I really should just switch it all to blogger, but that task seems just as daunting.

Anyhoo...  Owen is scheduled to have a sedated MRI of his head, neck and spine next Friday, July 25, down at Riley.  They are checking for syrinx and signs of tethered cord.

Yes, the dreaded T word.  It's been 3 years since he had detethering surgery and we were really hoping to make it to 10 or 12 years old before needing it again, if ever!

[quick review, for those who don't know what Tethered Cord means.  In a nutshell it is scar tissue attaching itself to the spinal cord and "pulling" on it, not allowing it to move freely.  It causes deterioration of function.  For a more thorough description check out the SBA fac page HERE.]

Honestly I didn't see this one coming.  And I am kind of hoping we don't find anything.  Let me back up...

Since the beginning of April Owen had been complaining almost daily that his legs hurt.  At first I just brushed it off as an attempt to get out of walking.  He'd want carried or to use the stroller or wagon.

I also didn't exactly know what we would do about it even if they were hurting.  Was he just growing?  Were his knees finally giving out?  What was it?  What doctor should I call?  So I kept brushing it off and holding out to ask about it at Spina Bifida Clinic at the end of July.

By June however, he was complaining of leg pain in many different situations not just when he was tired of walking—braces on, braces off, first thing in the morning.  It was weird and he was persistent so I sent a quick email to our Develeopmental Peds NP at Riley, asking where she suggested I start, our local pediatrician?  

I did not expect the response I got back.  She said that kind of persistent leg pain would make her wonder about TC, especially if accompanied by other symptoms.  She mentioned and MRI might be in order if we were seeing other symptoms, which she listed. At first glance I didn't think we were seeing any of those.   Whew!  It must be something else.

She said she ran it past Gloria, Dr. Boaz's NP, and Gloriea said she would consider the shunt first, but an MRI may be in our future. It's weird to hope it might be the shunt. (even though my gut knows it is not.)

Yhe mention of TC struck fear in my heart.  I quickly pulled up the list of TC symptoms on the SBA website.  Sure enough, leg pain was one of them.  It just wasn't one Owen had experienced, or voiced, three years ago, so TC did not cross my mind in a serious way.

Over the weekend I started thinking more about the other symptoms the NP asked about and as Eric and I discussed it I began to reconsider my initial response:

Bladder changes.... what would a bladder change be?  Bladder spasms? yep.  Well, Owen had been having some of those the last few weeks.  I had chalked it up each time to a precursor to a UTI (which never came.)

Bowel changes.... if having 8 accidents in the last 2 months, when you hadn't had any for over a year counts?  then Yes, he's had bowel changes.

Headaches... check.  but I had routinely chalk them up to the weather or just the plain old reality of shunted hydrocephalus.

Back pain.... Owen has been OBSESSED with having his back rubbed the last 2 months (out of the blue)  He says it hurts in the bones.  so... check.

Gait changes...  the week before when we were at the park I watched him walk I thought to myself, "he sure does crouch more than he used to and his arms are all over the place.  Is it time for new braces so soon?  is it his knees giving out?"  

When these thoughts cross my mind I promptly try to quit worrying and just enjoy watching the child they thought would never walk CLIMB and RUN at the playground.

I had to admit that I have been noticing gait changes.  Just in denial I guess. 

Irritability... After so many months of doing so well, being so happy, so verbal, so My Happy Owen, we'd been seeing more grumpy irritable Owen.  Was it b/c he was in pain?  Still a subjective factor to me, but plausible.

Fatigue... his endurance is definitely not what it used to be.  dang.

With heavy heart I emailed the NP (Lori) and our Neuro Surgical NP (Gloria) that Monday listing out his symptoms.

Gloria ran it past Boaz and he wanted to see him and get an MRI.   Gee wiz.  Not what I was hoping for, but by this time we were beginning to suspect the same thing.  And I was kicking myself for not putting the pieces together sooner.  This all happened in June.

I can't be too hard on myself.  It is hard to decipher.  He is able to be active and do amazing things like run or step up a curb or climb on the playground.  It's like he saves up his energy and pushes through the pain for the things he really wants to do.

See how easy it would be to consider it manipulation, laziness or whatever?!

I've been journaling his symptoms this month.  I'm curious to see what the MRI shows.  We are thankful that he had a one year post-op MRI after tethered cord release 3 years ago.  There is something to compare it to. 

I imagine there will by syrinx present (b/c they were still there 1 year post). The question is how big are they and where are they.

The MRI is only one part of the puzzle.  Even if it shows tethering (which MRI's always will on people with Spina Bifida), and even if it shows large syrinx, that in and of itself doesn't mean we rush into surgery.  Then comes the tricky part of determining if/when his other symptoms are warranting surgery.  That is a tricky line.

Please join us in praying for wisdom in this.  

I am thankful for God's perfect timing.  Owen has his MRI Friday the 25th. We will consult with Boaz that afternoon and then we will com back on Tuesday the 29th for our regularly scheduled Spina Bifida Clinic.  It will be good to be able to discuss things through with so many of our trusted doctors.

Part of me hopes everything looks great and all these concerns really were unrelated.  And yet, part of me wants answers as to why we are seeing so many things.  Our goal is to preserve as much function as we can for him.

Trusting in God's sovereign control over all things as we wait.

_____

In Happier News!

Check out the photos.  I posted 4 more.

We traveled to Minnesota and spent time with my extended family at my brother's house.  Owen really enjoyed riding his "motor boat" and tubing.  I was not quite brave enough to let him try it on his own.  He kept trying to stand up and would nearly bounce out of the tube when I went with him!  He absolutely loved it.

Check out this video of Mark letting Owen help drive the boat.

There are also a few pictures of us repainting the boys' bedroom which used to be the playroom.  It was sad to paint over the mural.  It was probably my favorite I've done.  sniff sniff.  Owen was determined to help paint and actually did a pretty good job!

Owen loves to talk about "his apartment".  He has very elaborate plans for it and brings it up at random times.  I get him to talk about it a little in the video.  He also currently wants to be a firefighter among other things.

Enjoy!