Monday, June 18, 2012

Kennedy Krieger, Day One

I'm not quite sure how to describe today, other than saying that KKI is like night and day from Santa Clara Valley Medical Center.... in the best possible way.  Jason's first appointment was at 9am.  We got there early, and we were allowed back right away.  We met with a nurse, doing basic background information and then the doctor came in.  He stayed with us for 2.5 hours.  None of Jason's other doctors have ever spent that much time with him.  He did a full exam, going through every system that is impacted by paralysis.  He also did a full ASIA exam, which determines the level and completeness of Jason's injury.  I've written about the complete vs. incomplete issue before...going in today Jason was officially considered a T4 (injury level) ASIA A (complete).  We had our doubts about this diagnosis.  At the end of today's appointment, J's doctor said he was a T5 ASIA B (incomplete, partial sensory preservation below injury level), verging on ASIA C (incomplete, partial sensory AND motor preservation below injury level).  This change is important (actually this is HUGE), and might prove to be particularly beneficial when it comes to getting insurance to pay for advanced therapy.

When the doctor did these exams, he would always say "not yet" when Jason said he couldn't feel anything.  He had an entirely different attitude about SCI and recovery than the other doctors we've dealt with over the past 11 months.  At SCVMC, J was told he'd never walk again and to expect a life in his chair.  Therapy reinforced this prognosis.  It's different here.  Their work has shown them repeatedly that activity based therapy (what he'll be doing here and what he does at SCI-FIT) restores function, even years after an injury.  It's such a refreshing and hope-filled place.  I had to stop myself from crying at one point, because FINALLY a medical professional was being optimistic.  We finally had someone who supported our goals and thought they were realistic...that recovery was possible.  (A quick aside: The folks at SCI-FIT have been encouraging, but the docs at SCVMC have brushed them aside since they're therapists and not MDs.  I have a feeling they'll not be able to brush aside the prognosis of a Harvard-trained doctos working at Johns Hopkins University.)  

After the medical eval, we got a tour of the gym and the pool area.  The pool is crazy.  You transfer into a water wheelchair and then roll out onto the floor of the pool (it raises up above the water).  The floor has holes all through it, so when it's lowered, the water comes up as high as needed for the patient.  Then you transfer out and begin your work-out, either on the treadmill or the parallel bars.  There are video cameras underwater that project images in front of you, so that you can watch foot placement and make sure you're stepping correctly.  Very high tech.

After a quick lunch, Jason had his PT evaluation, which was also incredibly thorough.  They checked every muscle for signs of "firing," checked range of motion, and used electronic stimulation to see how his muscles responded (this is a big part of therapy here).  They also had him stand up in the parallel bars to check upper body strength and pelvis control.  They were quite impressed with the control he has.

Jason's looking forward to a regular day of therapy tomorrow, and we're both really excited about what the next two weeks will hold.  I think this is going to be really good, though.  Really, really good.

Love you all,


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