April 30, 2013

Spring has sprung... We sent Nora to school in shorts today (well, really a skort, 'cause the girl's just got to have a skirt on). I wore a sundress to my last day of classes. And I had two important realizations as I left O'Shag for lunch: 1) I did it -- I managed to teach all my classes this year (and even find moments of joy and peace in my classroom) and this year's all over but the examinating and grading; and 2) today marks the 9-month anniversary of John's accident.

 He's been discharged from therapy, as they made all the progress they could there. He has a strict exercise routine that he has to follow to avoid regression of the function he's regained. There are physical limitations that we're all three of us learning to live with, each in our own way. Lots of questions about the future are wide open right now. But we know some definites. He is here with me and Nora, right where he belongs. And when I remember where he was 9 months ago -- paralyzed from the neck down, unable to swallow, and barely breathing on his own, I lose my breath. So tonight, as he eats the dinner I will cook later on and breathes in the fresh spring air, we will pause to thank God for the blessings embedded in the journey of the past 9 months.

3/26/13

We saw John's South Bend neurosurgeon for a follow-up today. His latest set of x-rays confirm that the fusion is holding strong, and the bone is growing very well around the hardware. At this point, John won't need more images taken unless new problems present themselves, though he'll always need to be protective of his neck.

The doctor also tested his reflexes. Consistent with central cord syndrome, the reflexes in his hands (measured at his finger tips) are worse than those in his legs (measured at his knees).

The spinal decompression is complete (that was the objective of John's surgery -- removing the C4 disc prevented further injury to the spine and we were waiting for the swelling to completely subside), and there's no reason to expect further damage to his spine. He has hit a plateau in his rehabilitation, and at 7 1/2 months out, we have a good sense of how much function he is going to regain. While the recovery has greatly slowed at this point, changes are still possible for up to three years after his accident, though, and he has to maintain a strict exercise schedule to not lose his hard-won gains.

Our next appointment with this doctor in July (at the one-year mark).

minor housekeeping note -- the comments are fixed

Hi everyone -- several of you have told me you can't comment on the blog posts. I've finally figured out how to open up comment to everyone, not just those with gmail addresses. So I *think* you can comment if you want (not that you have to -- but we love reading them!).

3:1 (aka 3/20/13)

At one point in the long weeks leading up to Christmas, when John had sort of adjusted to being home and was into the rhythm of therapy every other day, but felt like he wasn't seeing fast enough progress in returning to feeling like himself, his OT told us the 3:1 rule. It takes 3 days at home, she explained, for every one day in the hospital to return to your pre-hospitalization state of health. At the time, I was NOT interested in hearing a projection that far out and did not calculate when that would happen (this was probably when I heard the radio DJ say something about how Robin Roberts was in the hospital for 4 weeks and they couldn't imagine being in the hospital that long -- and I swerved as I yelled, "Try imagining more than twice that long!!!"). Sometime in January, when we realized that John wasn't able to return to work yet, I did count out those days.

And today we’ve hit that special 3:1 day -- he has now been home three times as long as he was away in the hospital.  Looking at his face, he looks like he's back to where his general health was when he had his accident. This is not to say that he's close to completely recovered -- that path still winds ahead of us. But he looks like himself. 

At this point, he has to keep up his amazing efforts at rehabbing to recover as much pre-accident strength as he can and to train more muscles to regain function. He needs to build up stamina -- he still sleeps several hours during the day, in addition to a full night's sleep -- because he still suffers from significant fatigue just from his ADLs (activities of daily living), and he deals with pain on a daily basis. And he has to learn to live with the differences between where he gets and where he was on July 29th, including the side effects of the SCI that are most likely permanent, like clonus:

a series of involuntary, rhythmic, muscular contractions and relaxations. Clonus is a sign of certain neurological conditions, particularly associated with upper motor neuron lesions involving descending motor pathways, and in many cases is, accompanied by spasticity (another form of hyperexcitability). … clonus causes large motions that are usually initiated by a reflex [from the ubiquitous Wikipedia]

and tremors in his hands.

But we are blessed and we know it: the destination we are headed toward is so much  better than it could have been as to be scary -- it is a miracle that is daunting to be worthy of. A sacred thought to ponder as we enter into the days leading up to Good Friday and Easter...

So I'll close with a wish for you all: Happy 1st day of spring! May it bring you all the rejuvenation you seek.

Let's be a little crazy, shall we?

So we picked Nora up from school this afternoon at 5:20 and instead of heading straight home to put dinner in the oven, we stopped to get some of these:

to celebrate the fact that John's been discharged from PT for his shoulder!!!! He still has therapy 3x's a week for his legs/walking/balance/gait-training, but the secondary issue with the shoulder in under control enough that he can do the exercises on his own. Whoo-oo!

A lovely reward for very hard work done well and with dedication, we all agreed.

March 5, 2013

I think it's time to teach Nora that old saying, "March comes in like a lion, goes out like a lamb"... We had what I'm hoping is the season's last snow storm today. We even got enough snow for Nora to get a snow day.

John and I ventured out for his follow-up with the orthopedic surgeon to check on his shoulder. The doctor's report: he's made nice progress in the reduction of his pain and the increase of active motion. At this point, he can move his hand to behind his back (which I hadn't seen since before his accident). He still lacks complete elevation, so he needs to continue to use his pulleys at home to stretch his shoulder and work on increasing his range of motion. The doctor told him that he thinks it's a reasonable expectation that he'll eventually have a shoulder he can use fully pain free. Apparently, there's a one-to-one correspondence of pain and motion -- the greater the range of motion he gets back, the less pain he'll have. So for the next four months, he needs to be particularly vigilant in stretching it out since adhesive capsilistis has a tendency to flare back up in the first few months after getting it under control; the exercises that he's been doing will keep his shoulder flexible enough to fully heal and hopefully ward off a relapse.

February 20, 2013

After driving through over an hour of heavy snow (like 1/2"/hour, 20-30 mph winds heavy snow), we had a lovely day in Chicago for John's check-up at RIC. Blue skies and a brisk (OK, frigid!) wind -- but not a hint of the snow we'd left behind somewhere west of LaPorte. But enough of the weather report -- I'm guessing that's not what you're here for! (Funny side note, first: when I went out to reshovel the walk before leaving -- less than 2 hours after shoveling it to take Nora to school -- and saw how heavily the snow was still falling, I triple-checked the weather report online, and it swore to me that it was not snowing in South Bend. The snow on the porch was awfully fluffy and fake looking -- maybe it was my imagination?)

And now for the update you're skimming for:

Dr. C continues to be very pleased with John's progress! John's strength is slowly returning, and for this stage of the game, it's very good. He can now go against gravity with most of his limbs (yay!) -- it's so cool to watch them test for this. The doctor has John lift his arm, for example, and then John has to resist having his arm pushed down. It's amazing to see the mix of very high tech and very low tech techniques that have been used over the past 7 months, from the fanciest treadmill I could imagine to the doctor trying to squeeze John's pinkie and pointer fingers together. His discharge from OT is now official, reflective of the progress he's made in rehabbing his hands. He can almost spread his fingers completely now.

The cold does continue to challenge John. After lunch, we walked the 4 blocks from the restaurant to the hospital (I had dropped him off on the way in and parked the car), and that bright blue sky was deceptive: it was COLD! And Chicago was living up to it's nickname. And the wind and cold made the walk rather difficult for John. The good thing is, we know this will happen and we can plan around it. The bad thing is, we live in South Bend -- as I say to my students when they moan about the wacky weather and the cold, "Welcome to South Bend!" But winter (and the cold) can't last forever....

We also had the wonderful pleasure of stopping by the pediatric floor of RIC -- our neighbor's son is now rehabbing there. It was a privilege to witness for him (and his family) the powerful work that the RIC team can do. Please continue to keep them all in your prayers as well. Rehab is a long journey, and the more the merrier on the prayer front!