Standing Up! At Home!

So, as you've probably figured out by now, we're home.  It's been a busy almost two weeks: lots of laundry, unpacking, cleaning, grocery shopping, and all the other fun stuff that comes with returning from a month long trip.  Savannah also made things interesting for us this week...she came down with Hand, Foot, and Mouth Disease, which is scarier sounding than it actually is.  She was lethargic, in pain, and developed all sorts of sores in her mouth and down her legs.  She's much better now, and hopefully will be returning to school on Friday.  It's been lovely to have her home, and get lots of cuddles (though I think we watched "The Lion King" in excess of 50 times...I can recite it now...).  The only down side of this has been that I've gotten very little done lately.  I go back to teaching next month and have been trying to get my syllabus and reading list finalized...hard to do that when you have a toddler who wants you to sit on the couch with her.

In Jason news, we're still trying to get all the medical equipment he was prescribed at KKI.  We should receive the e-stim device in the next few days, which will be great.  The standing frame will probably take a few more weeks (if we're lucky).  He's got his KAFO braces and we recently bought a walker, so tonight was his first time standing at home.  I forgot that Savannah has not really seen her daddy stand much since his accident.  Once he got up, she looked at him and said, "Dada, you're very tall."  It was sweet to hear :)

On another note, thank you for all the lovely messages and kind thoughts sent our way on July 9.  It was actually a very peaceful day.  We're doing as much as we can in terms of recovery, which is why I think we were both at peace on the anniversary.  We're very happy with where we are right now.

And now, some pictures....

Just a quick one of Savannah in her dance clothing (there won't be any more for a while). We've dropped dance classes for now since she was NOT a fan.  We'll try again next year.

Standing at home for the first time in over a year.  We'll move on to walking at home once I get a walker that is a little bit wider.

Family photo :)

Love you all,

Ashley

One Year

Tomorrow marks one year since the accident.

I have mixed feelings about this day.  July 9, 2011 is a day that is burned into my brain.  I still get a little panicked when I think of that phone call, the one where some voice on the other end said that my husband had a life threatening injury.  I remember the terror and uncertainty, the frantic drive to Reno, and being so thankful that Savannah was there, because had I not needed to care for her and make sure her needs were being met, I'm quite certain that I would've been an absolute mad woman.  It was a terrible day.

On the other hand, it was the day my husband did NOT die.  It was the day that would ultimately bring us closer together as a couple and a family.  I remember running into another woman at the hospital in Reno.  Her husband had also been in a serious accident, but she was happy because, as she told me, "I could be planning his funeral, instead I'm planning his homecoming."  A great attitude, and one that I have tried to adopt.  Because no matter how bad his injury seemed, it could have been infinitely worse.  And for that I am grateful- so, so grateful.

And I'm grateful for you.  For all of you who have reached out in a million different big and small ways.  From writing letters to making meals to watching Savannah for us, we've been amazed by the outpouring of support that we have received.  I've felt a lot of things this past year, but I've never felt like we were in this alone.  And that makes such a difference.

This has been a year of ups and downs, but more ups than downs I think.  It's been a story of progress and, thankfully, not too many roadblocks to that progress.  When Jason was first injured, there were no answers about long-term prognosis.  When we did get information about the long-term, it wasn't terribly positive (you'll be independent, but will never walk again).  But he seems to have defied the odds, or at least defied the doctors.  And I get the feeling he's not done yet.  This story of recovery is just beginning.  

With all my love (and gratitude),

Ashley

Train!

Savannah and I made it to SC early this morning (and Jason and Nick are back in CA, all settled in).  Our train ride didn't go quite as planned...we left 2 hours late, got in to Columba 3 hours late, had about 3 hours at the beginning with no air conditioning, and I got little to no sleep because my daughter refused to share any of the bed bunk with me.  BUT, other than those things, it was a lovely adventure.  Savannah can't stop talking about how she rode the "choo choo train."  Since it was so much fun for her, I'll definitely consider doing it again in the future.  All things considered, it was less stressful than flying and WAY less stressful than driving down on our own.

Relaxing in the lounge...it's a hard life.

Running off some excess energy before we boarded.

FINALLY on the train!!!

Having a little snack.

Watching everyone get on board.

Despite the obvious fact that the fans were blowing in the vent, there was no cool air.

Which was very sad indeed.

Beautiful views.

iPad tea party

And this was too funny not to include...I don't think I've ever captured her actually in the act of falling asleep :)

In other news, Jason got his KAFOs today, so he'll be able to start incorporating them into his SCI-FIT workouts tomorrow.  Sav and I spent today at the local children's museum with my dad and brother, and she also got to run around with one of her cousins this evening (which she thoroughly enjoyed).  We're off to the zoo tomorrow...hopefully we won't melt.  The heat here is ridiculous.

Hope everyone had a happy and safe 4th of July.

Lots of love,

Ashley

Adventures in Electricity (or the lack thereof)

Those of you in the VA/MD/DC area already know this, but last Friday night there was a huge thunderstorm in the area.  That was our last night in Baltimore, and we were awoken by lots of noise.  The wind from the storm had somehow blown open several of the windows in the bedroom and living room.  We were lucky in Baltimore, though, because the electricity did not go out there (or at least not at our hotel).

We were scheduled to head to Fairfax yesterday morning...where they had lost electricity.  We checked out of the MD hotel...couldn't call our hotel in Virginia, because their power was out and, plus, once we got on the road, cell phone reception was incredibly spotty due to the number of cell phone towers that had been impacted by the storm.  When we arrived at the hotel (finding it was fun...we're use to relying on Google maps on our iPhones, but we had no cell or internet service in VA....had to find it the pre-technology way!).  The hotel had no power, but they let us check in.  In order to make sure the room was okay for Jason, I had to check them all out using the light of my iPhone to look around.  We settled in to the room (sorta...didn't unpack just in case we needed to move again).  Did I mention it was hot?  Like over 100 degrees outside hot?  So, yeah, that was fun.  The one good point in this was the confirmation that Jason has recovered some of his ability to sweat below his injury...that was one of the big reasons he's had problems with heat in the past.  He did much better yesterday.

Initially, we were told that the power would be out for 2 days (!!!), but thankfully that was not the case.  All in all, the power was out for about 14-15 hours.  We've cooled off considerably since then, and the folks at the hotel have been nothing but wonderful.  I'm hoping that all of our friends and family in the area have also cooled off since yesterday and once again have power.


The lack of electricity did not hamper Savannah's fun...she enjoyed playing in the curtains for much of the afternoon...

And snuggling with Daddy when the lights came back on.

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

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 :)

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

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