Goats...

Right now, Savannah is somewhat obsessed with goats...baby goats to be more specific.  While we were in London, Kim took her to a local farm that has 3 baby goats.  When we returned, we all went to the farm for the annual sheep-shearing day.  Sav liked seeing the sheep, but, really, the goats were the main attraction.  We had a lot of fun, but while we were there, we encountered a new SCI problem.  As I've mentioned in previous posts, SCI compromises more or less everything below the injury level and, as we were reminded on Sunday, this includes the body's ability to regulate body temperature.  Jason doesn't sweat (much) below his injury level, so he can get overheated REALLY quickly.  Now, they told us all of this in rehab...and I've got full kits of spray bottle, hand-held fans, hats, and bottled water ready per nurses' instructions, but we both forgot all of this.  By the time Jason got out of the hospital, he had missed the little bit of hot weather we get here in the Bay area, so we haven't really had to deal with heat. But, last weekend was unseasonably warm, and we got a nice reminder that heat + SCI = bad combination.  Jason started feeling pretty terrible, and we couldn't find any water bottles.  Thankfully, the farm had lots of shady spots and the occasional breeze, so it wasn't as bad as it could've been.  Once he got some liquid into him, all was well.  It was good this happened, now, though, before we head into Baltimore in a few weeks (East coast in June...gonna be HOT).  Now, we know to be better prepared.

For those of you who are interested....here's Savannah with the goats...

Home again, home again

We are back home after another uneventful flight (the best kind, right?).  We found the folks at Heathrow were infinitely better at dealing with someone in a wheelchair than the people at SFO.  At SFO, Jason was felt up by a TSA agent...at Heathrow, they didn't subject him to this.  We also were allowed onto the plane in London as soon as we got to the gate....and we didn't have to search them out for this, either.  At SFO, I had to tell them J was in a wheelchair, and we more or less waited in front of the check-in desk so they wouldn't forget us.  At Heathrow, they saw us when we came in to the waiting area, and immediately went and got the aisle chair, so that we could board (And we got to board before anyone else got on the plane, which made for a smoother boarding for all).  The flight home is LONG (close to 11 hours)...and it's all during the day, so I find it hard to sleep..thankfully there were something like 50 movies to choose from, and lots of TV shows.  They also feed you like every 2 hours on the way back...presumably to help with the time difference?  We got to have a nice afternoon tea service on the plane (sadly, the only time I had afternoon tea whilst abroad)...it was so good, and I've decided I need to find clotted cream here in the states.  Yum.

This was a great trip...I was worried that if things went badly, Jason would be hesitant to travel again, but as we were leaving he was already talking about the next trip, and possibly going to some other Selenium conference in France this fall.  So all good on that front.  It was quite the experience and I feel much more confident about traveling in the future....here's what I learned:

• Be more specific when inquiring about the accessibility of a room.  Ask, for example, whether the shower is more than just a roll-in...in our room, Jason could get into the shower, but there were no grab bars on the interior and the shower head was not hand-held.  Not terrible (We made it work), but not ideal either.  On future trips, I'll also take along some portable grab bars...they pack up easily enough and have worked well in our bathroom at home.
• We now understand the need for various wheelchair accessories that previously seemed unnecessary.  We for sure need to get something to hold his legs on the footplate of the chair if cobblestone is involved.  He'd roll over that and his legs would just bounce off the plate...oops.
• We can travel like we use to do...before the injury, our favorite thing to do in new cities was just to wander around, exploring without much in the way of a definitive plan.  We didn't know if that would still be possible due to the mobility restrictions (and practical considerations, like finding wheelchair accessible bathrooms, or restaurants without steps leading into them).  But it's all still possible, so long as we remain flexible, and slow our pace down a bit.  That was good to learn.

As good as the trip was, it was so lovely to get home again and see our girl.  Savannah had a great week with her "Mimi," and Sonja definitely enjoyed the extra long walks.  I think they were still happy to see the two of us, though.  We were only gone a week, but I feel like Sav grew a lot in that period.  She's more or less speaking in sentences now and she has two new teeth!  I've enjoyed having time to snuggle up with her the last day or two...normally she's too independent for lots of cuddle time, so this has been a welcome change :)

I hope you are all enjoying your weekend!

London, Days Four-Six

Sorry for the lack of posts, but Tuesday and Wednesday weren't terribly exciting.  It rained a lot, Jason went to his conference, and I worked on my dissertation (Actually got a decent amount done, too).  I had breakfast with a friend from Berkeley on Wednesday, which was a nice treat, and we also went out for drinks with some of Jason's co-workers last night.  Jason post-drinks was kinda funny.  He hasn't really had much in the way of alcohol since his accident (maybe half a glass of wine here and there), so a pint of beer was a bit much for him...let's just say it was harder for him to roll in a straight line on the way back to the hotel....

Today was my day to play tourist.  I went to Hampton Court Palace, which was one of Henry VIII's palaces (it functioned as a royal palace through 1737, when the monarchs ceased bringing the full court to HC).  As I was walking around the truly stunning grounds, I heard a little boy tell his mom, "Henry VIII really liked chopping off people's heads."  Something of an understatement, I suppose.  The castle was lovely, and the exhibits were really interesting.  I spent a good 3.5 hours there, just wandering.  I also found Savannah's stuffed animal for this trip.  We have a tradition of getting Sav a stuffed animal whenever we travel (she has Peter Rabbit, Paddington Bear, and a highland cow from the UK as of now).  Today, I found her a stuffed bear that's dressed as a princess.  She's really into princesses right now, so I think it's appropriate.

We fly home tomorrow morning, which we're both really excited about: we miss Savannah.  The flight leaves at 10:30am, and we should arrive at SFO around 1:30pm.  Hopefully, it is as uneventful a flight as the one over.  

London, Day Three

Oh my the jet lag.  Neither Jason nor myself got any sleep last night (I'm not exaggerating there...we literally got no sleep).  We finally gave up on sleeping around 5:30am and began getting ready for the day.  Being up and about so early was actually really nice...we got to enjoy a nice, leisurely breakfast together, which is something that pretty much never happens at home.

Took a cab to the conference center and once I saw how the lift into the building worked, I walked back to the hotel (I did that walk 3 times today...so something like 6 or 7 miles of walking....which totally justifies the Krispy Kreme donut I just ate).  While Jason was conferencing, I napped (just for a bit and I really did try to resist, but when I started reading what I was writing in my sleep-deprived state, I determined that napping would be the better use of my time), and then worked on my dissertation most of the afternoon.  I met up with Jason again at 4pm, and we walked/rolled back to the hotel.

Jason is definitely getting a chance to try out some '"advanced wheelchair skills" (as they called it in PT) while we're here...lots of wheelies and jumping of curbs to be had.  London is certainly less accessible than CA (makes me appreciate the fact that I don't really have to worry whether or not the restaurant/store/etc that we want to go to is w.c. friendly), but given that, as far as I'm aware, there aren't any regulations about accessibility, it's not too bad.  Jason thinks the people here are much nicer towards people in wheelchairs...although it might just be the accent.  Things sound so much nicer when said in a British accent :)  That's not entirely true though...people do seem to legitimately be better with disabilities here.  In the U.S., most people go out of their way to not draw attention to folks with disabilities, sometimes to the point of inadvertently ostracizing them even more.  I know it's not intentional, but in not acknowledging the disability, it's almost as if we render people with disabilities invisible.  Apologies if that doesn't make any sense...

Well, I'm off to bed (J is already asleep)...hopefully we'll actually get some sleep tonight!  More conferencing and dissertating tomorrow!

London, Day Two

Ouch.  That's all I'm thinking right now after our "little" sojourn around London this morning/afternoon.  Jason is passed out in bed with a bottle of motrin and tube of Icy Hot close at hand :)  So...how did we get to this point?

After a lovely breakfast at the hotel (for whatever reason, they decided to throw in free breakfast for us both each morning...I won't complain about that!), we decided to make our way down to the IET Savoy Place, which is where the Selenium Conference will be held this week.  It's close to two miles away from our hotel, so it's "rollable," but given how sore we now are, I'm thinking Jason will take a cab in the morning.  There are about 5-6 steps up the front of the Center, and we don't really see another way in that doesn't have stairs.  What we did see, however, was some sort of lift that looks like it will go up the arm ramp?  I haven't seen too many devices like this in the US, so it'll be interesting to see how it works tomorrow.  Otherwise we'll have to find a creative way in...

After that, we made our way to Covent Garden (maybe 2 blocks away from the IET Savoy...too bad the two blocks were all uphill...).  The walk from the hotel to Covent Garden was pretty good...it was accessible.  There were some parts that I helped with, just because J's arms get tired from pushing over uneven pavement a lot faster than they do over perfectly flat pavement...I also helped with the hill up to CG (thinking thats why I'm a little on the sore side as well...).  CG itself was not really accessible at all.  Jason could get into the market area, but there were steps leading into more or less every store, so he couldn't go into any of them.  We had ice cream there (at this place http://www.theicecreamists.com/#/Lick Your Addiction).  It was good :)

We rolled/walked back to the hotel after wandering around CG for about 1 1/2 hours or so.  So, round trip about 4 miles rolled...which is a lot for Jason.  He has the stamina for it, but his shoulders are hurting, hence the Icy Hot and Motrin.

W'll venture back out in a bit for dinner...and then maybe a movie?  We're not used to having the time to watch movies (thanks to Kim for watching Miss Savannah for us this week....we're both missing her terribly).  Tomorrow is when the real "work" begins.  Jason has his conference, and I'm going to work on my dissertation, which promises to be lots of fun :)

London, Day One

After a ten hour flight, we made it to London around 1:00pm this afternoon.  The flight went really well, actually.  The folks from Virgin Atlantic were great-the only real snag we hit was getting on the plane.  The ground crew from SFO used their own aisle chiar to get J to his seat, and it was a bit too wide to get past the first class seats (sadly, they did not upgrade us, as we have heard some airlines will do...).  Eventually, we got to our seats, but Jason had to transfer in with something of an audience.  I'd hoped they would wait for us to at least get to our seats before letting the rest of the passengers onboard, but no such luck.

The flight itself was uneventful...we both slept through much of it.  After arriving at Heathrow, we made our way to the hotel.  I was worried about how accessible the room would be since there is no ADA here, and no real regulations/guidelines for accessibility.  The room seems to work for us, though.  The shower could have been better designed, but we'll make it work.  Not sure how other SCI-ers would stay here on their own.

We did have quite the funny (not so funny at the time) moment.  In the bathroom, there is a big red pull-string...presumably to be used in case of an emergency.  Anyway, I accidentally pulled it while Jason was in the shower.  I tried to run to the phone to call the front desk to let them know it was an accident, but...before I could get through, we had people banging at the door (It's good to know that, should there be an accident, we'll have help quite quickly).  I tried yelling to tell them we were fine, and no need to worry, but they insisted on coming in....so, I got to answer the door in a towel (oh, yes, did I forget to mention that I was still getting ready post-shower when I pulled the damn cord).  I barely kept them out of the bathroom (where J was still showering)....I guess they took my word that all was okay.  I now know how to disable the alarm...so that's good to know.

After all that excitement, we decided to venture out to see how accessible this city is.  It's not too bad (not great, but Jason should be okay).  He got quite the workout going up and down hills, over uneven pavement.  J also had to navigate large crowds, which isn't something that happens too much in Fremont!

We don't have too much officially planned for tomorrow, other than we'd like to find our way to the center where the Selenium conference is being held.  Then we can decide whether it's "rollable" or if J will need a taxi each morning (all of which are accessible...why don't we have that in the US??).

I hope you all are doing well!

Lots of love,

Ashley

Nine Months

Nine months post-accident...and what an exciting month it has been!

• This was the month of walking...walking at SCI-FIT on the parallel bars, and, of course, walking with the Eksos.  It was great to see Jason up and about.  Now, we're just waiting to get leg braces, so standing and "walking" (with the braces, this will be largely therapeutic and not functional).  We've hit some road bumps with the KAFOs over the last few days...I don't want to get into it now because I'm more than a little frustrated with the situation (and I'm afraid I'll write some harsh things if I start venting...).  But, no matter what, Jason will end up with leg braces, it just might take a little more time than we anticipated.  
• He's still going to SCI-FIT six hours per week.  He's so strong now, and I'm constantly amazed at what he's recovered and the adaptations he's made.
• We're headed to London on Friday...ya'll say some prayers, think good thoughts, and do what it is you do...we're a little nervous about this first flight.  I'm sure all will be fine, and I've slightly over-planned everything in typical Type A fashion.  
• We've cancelled our planned trip to San Diego, because......
• We're going to Baltimore, MD in June!  We've been working on this for a while, but it all got approved recently.  Jason is going to do 2 weeks of outpatient therapy at the Kennedy Krieger Institute at Johns Hopkins University.  KKI is the home of the International Center for Spinal Cord Injury, and is a pioneering place in terms of SCI research.  He'll be doing a lot of activity based therapy, as well as some aqua therapy.  Originally, we planned to go around Christmas, but they had a spot open up for June 18-29, so we're shuffling our schedule around.  We've got high hopes for KKI, and are also looking forward to seeing some of our East Coast friends and family while we're there.  I think we'll plan on either arriving a little early, or staying a little late so that we can visit people.

I hope that all of you are doing well and enjoying the Springtime weather.

Much love to you all,

Ashley

In the Spotlight

Jason returned to SCVMC for his second day with the elegs this morning.  Things started off pretty quietly-not too many other people were in the gym with us, and Jason was able to do a few laps around the gym without worrying if he was going to be in someone's way.  He did really well with walking, and he got to help train the Santa Clara PTs on some of the safety features of the Eksos (the Ekso folks asked him to yell stop as he was beginning to stand up, just to see if the SC PTs knew how to respond to such a situation).  The most exciting part, however, was when he got "un-tethered" and was able to walk out of the gym.  On Tuesday and for the first part of today's session, Jason was hooked up to a rope that connected to the ceiling, just in case he fell or lost balance.  After he did so well today, though, he came off of the rope and was able to walk around a bit more.  This video shows Jason walking out of the gym.....the first person to do so at SCVMC :)

I definitely could see improvement from Tuesday to today.  Once he got off the tether, it seemed like the gym got a lot more crowded.  For those of you who know Jason well, you know that he's not really a big fan of being in the spotlight.  He doesn't like a lot of attention.  He had to get over that a bit today-we were both interviewed on camera for Ekso Bionics (I guess they're putting together a video of some sort), his picture was taken (repeatedly) by the hospital PR people, and then there were just a ton of people dropping in to see the new gadget at work.  It was a little overwhelming.  You can kind of see the crowds in this video...

Overall, the Ekso experience was really positive.  Jason certainly thought it was a lot of fun.  Hopefully, he can take part in future R&D.

On another note, I dropped off the care packages/bags today for the patients on the SCI floor..twelve in total.  Thanks to everyone who contributed to that effort!

The Rest of the Videos

I couldn't upload all of the videos from elegs earlier because I was relying on the wifi at Starbucks, which is not so great. Here's the rest...

elegs, Day One!

Jason tried out the elegs today for the first time, and it was so incredible!  He spent a good bit of the session just getting measured and fitted into the braces (a good hour or so on this alone), but then he was up and walking.  It took him a few steps to get the hang of it all, but, by the end of the session, he was doing really great...actually asking the PT folks to move faster, because they were going too slowly for him :)  We got to meet a few of the people from Ekso Bionics, who were supervising (the PTs at Santa Clara Valley Medical were being trained on how to use the device), and they told me to make sure that Jason gives them all of his info before the end of the week, because they'd like to use him in future R&D!

I can't begin to describe how amazing it was to see Jason up and walking.  I didn't cry (mainly because he had been up walking, sans braces, at SCI-FIT over the weekend....that led to a complete meltdown...for me and the trainer he was working with), so I think I was prepared to see him up walking today.  He took 112 steps (and, no, I didn't count that myself...they told us that at the end)....those are 112 steps that have been hard won. J's brother Nicholas is here with us this week, and he commented afterwards that Jason was taking small steps, but I have to disagree.  I thought they were some pretty huge strides.  So, without further ado, here are the photos and videos from this morning....

Getting strapped in

Early Steps

Walking with More Confidence!

I'll try to add more videos from Thursday, but I think he's looking great :)

Love you all,

Ashley