Day 168

At Shirley Ryan, Collin’s Coma Recovery Score (CRS) was a 10 —a minimally conscious state. It's on the border of a vegetative state. Every week they did his assessment and he scored consistently the same. He might've gained a point in 1 area and gone down in another, but for 9 weeks he was a 10. 

The CRS-R consists of 23 items, grouped into 6 sub-scales:

1. Auditory
2. Visual
3. Motor
4. Oromotor
5. Communication
6. Arousal

The lowest score on each sub-scale represents reflexive activity; the highest represents behaviors mediated by cognitive input. The total score ranges between 0 (worst) and 23 (best).

Our PTs here give him a much lower score, a 6; placing him back in a “vegetative state”. 

They’ve never seen him follow commands. He doesn't move his arm to knock over objects or give a high five. There is no response to a pain stimulus in his feet... or the sound of a metal can being dropped behind him. 

We center our days around going to Fay for therapies.  These guys are great with Collin. We appreciate all they do for him. And until he’s able to engage in developmental skills and be more interactive, there is only so much they can do.  They suggested we slow down to 3 days a week w/ no speech therapy. 

Mark and I are keeping our endurance mindset. This new score doesn’t knock anything off course. They see Collin for just a short amt of time each day. We get the whole 24hr picture. 

We see his growth.

Recently, our friends from Chicago were here visiting. We wheeled Collin's chair up to the Peleton bike, removed the bike seat, clipped his feet in the pedals and he engaged and rode around Iceland for 20 minutes straight. I think we had the resistance at 23. It's incredible when things align for him. Since then, he hasn't been able to put it together for more than a minute at a time. Mostly he forgets to bend his knees--which presents a challenge for any cycler. 

We see him waking up.

A few times he heard Mark come in from the garage, down the hall. And he clapped his legs together to get his attention.

And his best friends put a smile on his face every time. 

His eyes are bright and clear- and seem to be working together so much better than before.  Although he doesn't move them up and down nor past the midline to the left.

And he has a soft and purposeful blink. An action that he chose on his own and does sometimes when we are talking to him.  Some blinks are long and slow. Some come in twos and threes-with varying degrees of pauses. And he’ll toss in a quicky. A form of Morse code that he assumes we know. Knowing Collin, we'll find out later that it WAS, actually, Morse Code. And he's been patiently waiting.  Dropping valuable hints along the way-- to help us unlock this mystery. Had we simply clued in and taken the time to learn the language.

Whatever he's trying to say, he seems pleased that we have a mutual understanding. We're trying. 

Going less to Fayettville means doing more of what seems to be working at home. We’ve revisited playful games from when the kids were little and have invented new ones. All aimed at stimulating and exciting his mind. Strengthening his body.

Mark pulled a page from the Full Metal Jacket movie and now, in the morning, in his best drill sergeant voice, I hear,  “LET ME SEE YOUR WAR FACE.”  And it takes everything Collin has....to pull out an audible “mo-o-o-a-a-n-n.”   His little war cry. 

So when things don’t go RIGHT. Going LEFT is a pretty safe bet. And we are excited about some of the things we can try with Collin.  Now that we have some extra time.

We remain open to the possibilities and are willing to do whatever it takes. 

Thank you guys.

We’ve never once felt like we were in this alone.  

We absolutely love you for it.