Friday, June 29, 2012

He Walked.

When Jason started KKI two weeks ago, he and his PT set some goals for this rehab period.  One of their "stretch" goals (meaning it was possible, but not probable) was for Jason to take 7 steps in the KAFO leg braces, without using the e-stim, without the protective harness that takes some of the weight off of him, and without his PT stepping in to help move his legs.  As recently as Wednesday, I thought the 7 steps probably wouldn't happen.  He didn't seem like he was quite there yet.  He proved me wrong today...really wrong.  Jason walked 100 feet in the KAFOs today, all on his own.  It was amazing to see.  Less than a year ago (and as recently as a few weeks ago), we were told he would not walk...to stop hoping for it.  This just goes to show that doctors aren't always right, and that every injury is different. (BIG BIG caveat here:  this walking is not yet functional, but it's the first step.  Also, I don't want to perpetuate the problem I see with how most people talk about SCI: this is not a case of someone just working hard and then seeing results...spinal cord injuries don't work that way.  This was a combination of luck, a misdiagnosis, and hard work).

I have a post-walk photo, but nothing from while he walking because I was the person measuring the distance.  I imagine I'll have plenty of opportunities in the future to take videos of him walking, though. 



His progress over the last two weeks has been astonishing...I think we're both really excited to see where things go from here.  He's been set up with a home program, and with exercises to take with him to SCI-FIT.  We'll also be buying a home e-stim system, so that he can continue this part of his treatment at home and work.  I'm also about to begin the process (again) of trying to get a standing frame for the house.  The folks here were able to get us set up with a much smaller one that should fit easily enough into our apartment.

It probably goes without saying that we've been really happy with our time here.  Jason will definitely be coming back (most likely in January), and we will become much more acquainted with the great, but not terribly accessible, city of Baltimore.  Planning the next trip should be a bit easier, though, since I have a better idea of the layout of the city (and where all the hills are!), and what we can expect with KKI.

We're heading to VA tomorrow for a few days.  Then Jason will return to CA on Wednesday with his brother, Nick, and Savannah and I will board a train for the 10 hour trip to SC!  It was 108 degrees there today, so that promises to be buckets of fun :)

To finish the series on KKI, here are some more pictures from the last two days:


FES Bike


Working on kneeling


This is what a standing frame (this one is a glider..sorta like an elliptical)


Date night!  Tapas and Sangria in the Inner Harbor


Getting ready to walk!!!


Practicing balance and core strength


This looks painful.


Jason with his PT, Nikia.  She was awesome.

Love you all,

Ashley


Thursday, June 28, 2012

KKI Update


Savannah went down to Fairfax, VA yesterday to spend a few days with her grandparents, so I was able to go to Jason's PT session yesterday afternoon.  I hadn't been to the longer PT session since his first day (I did aquatherapy, but that's a different beast entirely), so it was really fun to see how far he has progressed in the past week and a half.  

He started out on a machine called the RT 600.  He had e-stim pads attached all over his legs, and then the PTs used a harness to lift him up into the machine.  It's like an elliptical, motion wise.  

His therapists wanted him to practice his balance while on the machine, so we played a couple games of Wii bowling.  It was fun....and I lost....badly.

Jason with the Wii controller.


After the RT 600, Jason moved over to the KAFOs.  These aren't his braces (he'll pick those up when he gets back to CA next week), but it was good practice for when he does get his.  He has e-stim pads on for this exercise as well (the e-stim is a HUGE part of the program here).  The stim pads shocked his leg muscles and helped him with walking.  The harness you see in the photos is put in place so that he doesn't have to bear all of his weight while walking.  He did 160 ft of walking while supported with the harness, and 40 ft totally on his own.  It was quite the workout!  I think he'll be using the KAFOs exclusively at SCI-FIT for a while, since they have the set-up necessary for helping him with this.  He'll need to get a bit steadier on them before we work with them at home.


It was a lot of fun to see him walking like this.  Better than the elegs because this was him doing this more or less on his own, and not with the help of a robot on his back :)
video


And one last sweet picture.  Savannah met a new friend on Tuesday night...I think she's really missed having children her own age to play with!


Two more days at KKI...I'll be going to both sessions, so I'm sure there'll be more pictures/videos coming!

Love,
Ashley


Saturday, June 23, 2012

Aquatherapy

Jason had his first aquatherapy session this morning.  It went well, though Jason is unsure of whether it's something he wants to devote a lot of time to this next week.  If he does more pool time, it'll come at the expense of his regular PT time, since they're very booked up at the moment (for future visits, we know now to book all this ahead of time...couldn't do that this time since he needed doctor's clearance).  I took a good many photos this morning, so I'll just show you what all he did, as opposed to writing a ton.


This is what the pool area looks like with the "cover" on the pool.



Jason is in the PVC pipe wheelchair, getting ready to go into the water.


Water beginning to come up through the holes in the cover.




Fully submerged.


Working on balance and trunk control exercises.


Practicing chair to floor transfers.


Parallel bars installed.  


Standing up!




The screens in front of the pool are images from underwater cameras.  This way, his therapist can be assured of his foot placement and stride (once he begins walking).

It was a fun hour, though I thought I'd melt in there.  They keep it a little on the warm and humid side....

We're looking forward to a fun weekend.  We've enjoyed getting to see lots of friends and family this past week, and are hoping to see even more folks in the coming week.

Love you all,
Ashley

Friday, June 22, 2012

Sorry for the Silence

My apologies in taking so long to update everyone on the first few days at KKI.  Jason is still loving the PT sessions here.  He's going 3 hours per day, except for Tuesday when he had to go in a bit earlier to have a bone scan done (people with SCI lose bone mass very quickly in the first year post-injury, so they wanted to make sure his bones would be able to withstand a heavy workout....they are strong enough, but there has been loss, so we're upping his daily calcium).  The philosophy here is very similar to that of SCI-FIT: motion breeds motion.  You have to stimulate and move your muscles to have any hope of them remembering how to work.  They do lots of e-stim (electrical stimulation...basically shocking the muscles), and they will be sending us home with an e-stim machine so that J can continue with this.  Jason says that most of the exercises at KKI are similar to SCI-FIT, but are more focused: they do gait training (Jason in a holster/sling type thing, held over a treadmill with PTs helping move his legs), but they do it for an hour here with e-stim, whereas he'd maybe do 20 minutes at SCI-FIT, and not with any stim.

He got up in a pair of KAFOs (leg braces) yesterday.  He thinks standing in them is not as hard as people have made it out to be, but trying to walk is challenging.  His PT has a goal of him walking 7 steps, unassisted by her, before the end of next week.  It's a big challenge, but one J is pretty confident of being able to meet.  He also starts aquatherapy tomorrow morning.  This will be done separately from his three hours of PT.  I'll be tagging along for that, so hopefully I can include some photos of the set-up there.

In the mornings, and sometimes in the afternoon while Jason is at PT, we've been exploring Baltimore with Savannah.  We've spent a day looking at the tall ships that came into the harbor as part of Baltimore's "Sailabration" of the start of the war of 1812, and we also went to the Maryland Science Center.


Tall Ships...this one from Indonesia


Very focused


Can you see the people standing on the masts?


Dinosaurs!!


Morning at the MD Science Center

Playing in the Kids' Room


When it's 101 degrees out, you gotta get ice cream

And she loved it!

Play time


Yes, that says 103 degrees.  Ugh...

And my favorite picture from the trip so far...


I'll post more photos later, but you can see that we're having a good time!

Lots of love,

Ashley


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,

Ashley

Saturday, June 16, 2012

The Joys of Traveling with a Two Year Old

We made it to Baltimore!  We're all settled in at our hotel, which is very nice and in a great location.  We're only a few blocks from the Inner Harbor, and there is so much to do here: the aquarium, the children's museum, the train museum, and so on...it should be great times for Savannah and the rest of our family.  Getting here was quite the adventure...I was worried that I'd made a bad choice in booking an overnight flight for us with Savannah.  I think just flying with a two year old in general is not much fun...it doesn't matter so much that it was a red eye.  But here, just for you blog readers...the story of our flight....in pictures!

Savannah was VERY excited to go to the airport.   She got a new backpack, which she was very good about carrying on her own.



Our flight left at 11:35pm, so we tried to get her to fall asleep before we left.  We read Curious George.....

And tried having her lie down....but it didn't work.  At one point, before boarding, Savannah was running in circles giggling.  It was cute, but I'm not sure all the other passengers were as excited about her obvious energy levels....


The only way we could get her to sit still during takeoff was to feed her M&Ms...probably didn't help with the going to sleep thing, but I figured that was better than being kicked off the plane because our toddler wouldn't stay in her seat (pro-tip: after successfully navigating takeoff, do not put the M&Ms in your pocket...by the time landing comes around, they'll all have melted and you'll b setting yourself up for an epic tantrum).  After getting in the air, we tried to calm Sav down and get her to sleep (seriously, it was after midnight at this point....).  She didn't want to stay in her seat.  She didn't want to be held....after much fussing and fighting...I gave up.  And she slept on the floor in front of our seats.



I made myself feel better by telling myself that the plane was new-ish, so the floor wasn't probably that dirty.  Logical, right?  

We're looking forward to a quiet father's day tomorrow, and learning our way around the city.  Then we have the big day on Monday!

I hope you are all doing well and enjoying this lovely weekend!

Lots of love,
Ashley

Friday, June 8, 2012

Independence (and 11 months!)

Jason had his driving exam this morning and....he passed!  Actually, passed with flying colors.  Didn't get any points deducted.  He celebrated by driving himself to work...I was supposed to take him and then take Savannah to the children's museum to meet up with her friends, but that plan got nixed because of how long the DMV process took (and because, quite honestly, Savannah was a little terror at the DMV and the thought of taking her to any other public places just exhausted me...).  All our other trips to the DMV have been pretty easy and short.  We always have appointments, and we always seem to be in and out in less than 30 minutes.  Today's adventure took closer to two hours!  Jason was all ready to go for the exam, and was then told he'd need a special proctor...so that took a while.  As did all of the processing of paper work.  Oh well, we're done with it now!  And Jason can drive himself places, which is HUGE in terms of independence.  And it's pretty huge for me, too: lots less chauffeuring to do :)

The timing of getting the license is nice:  tomorrow is 11 months since the accident.  I'm not sure if, 11 months ago, I could've imagined him (and us!) doing so well.  I'm a little nervous about this next milestone....one year since the accident.  I'm not sure how either of us will respond to that day.  Even though, on a rational level, I know we're doing incredibly well, there's still an emotional element to this that can be incredibly heart breaking at times.  Most of these difficult moments revolve around our girl, and both of us re-adjusting our visions of parenthood.  For example, we're in the process of getting Savannah her first bike.  She's wanted one for a while now, but we've been hesitant.  I guess there are obvious reasons for this-Jason was, after all, paralyzed while riding a bike.  If I'm honest with myself, though, that's not the real problem.  In my head, it was always supposed to be Jason teaching her how to ride a bike.  He was supposed to hold on to the seat, running behind her as she pedaled off on her own.  That's not going to happen now.  This is just one example-probably not even that significant of one-but it's these smaller things that have a way of catching you off guard.  I know we would both appreciate any kind thoughts and prayers sent our way as we approach July 9.

Lots of exciting things coming up in the next month, though, that should make July 9 a little better.

  • Jason goes in for the final fitting for braces on Monday (thus ending a ridiculously long process)
  • We fly out to Baltimore on Friday, June 15!  I expect there will be a lot more blog entries while J is at Kennedy Krieger.
I hope you all are doing well!

Love you all,

Ashley

Saturday, June 2, 2012

An Update...in Pictures

Hand controls in!  DMV appointment is scheduled for Wednesday (at 8am...in Oakland...with a 2 year old...should be buckets of fun)



Jason practiced driving....



Savannah rode a pony for the first time!



And she also had her first scoop of ice cream (kiddy sized) from Baskin Robbins




Two weeks til the East coast, so that has been consuming me of late (lots to plan for, lots to ship out in advance).  We're all very excited, though, to see what that trip brings.  And I think Jason needs a vacation :)

Love you all,

Ashley

PS- There's a new show on the Sundance Channel called "Push Girls" about 4 women with varying levels of paralysis.  The first episode of the season is currently free on iTunes....it's an interesting show.  Kinda feels like "Real Housewives" for paralyzed folks.  Though I might not agree 100% with the depiction of paras and quads, I think it's great that networks are interested in showing how SCI-ers live.