Some SCI Stats

I found a website today that provided all sorts of interesting stats about spinal cord injury, and I thought I'd share some of them...

Most Common Causes of SCI:
Automobile Accidents: 34%
Falls: 19%
Gunshot Wounds: 17%
Diving: 7%
Motorcycle Accidents: 6%
Hit by a Falling Object: 3%
Medical/Surgical Complications: 2%
Bicycle Mishaps: 1% (!)
Other: 4%

So, yeah...Jason's type of injury is on the rare side.

• Average Age at time of Accident: 26
• Men make up 82% of SCI
• 39.8% of those with a SCI had not finished high school at the time of their accident.  Only 1.3% of those injured have a Master's Degree (again, Jason is in the extreme minority here)
• Most SCIs occur in July (like J) and on a Saturday (ditto)
• Cervical injuries account for 50.7% of cases, whereas thoracic injuries account for 35.1%

We had a lovely Christmas, and I hope that all of you did as well.  Savannah made out like a bandit :)  She's only moderately spoiled...

Jason has a big day tomorrow: driving lessons!  His big Christmas gift from me was driving lessons with hand controls, so he goes tomorrow afternoon for the first one.  He's really looking forward to getting out of the passenger side of the car for a bit!

I'll be posting Jason's six month update in another week or so (I'll have to do it a few days early since I'll be in Scotland on the actual 6 month anniversary).  We've got some exciting news, so try to check back :)

Love you all,

Ashley

Our Christmas Letter

I wanted to share our Christmas letter with all of you, since I didn't have everyone's physical mailing address.   I hope you are all enjoying the holiday season-we certainly are!  Jason's mom and brother are with us now, and his stepfather will arrive tomorrow.  We have a full slate of activities planned for the next few days :)

Happy Holidays!

I feel as if I begin all of our Christmas letters with something about how wonderful the previous year has been.  In many ways, this is especially true of 2011.  More than any other year in our lives, 2011 has shown us how very loved and supported we are.  It has also been the year that has most challenged us- individually, as a couple, and as a family.  

For those of you who don’t yet know, Jason was in a bicycling accident in Lake Tahoe on July 9.  In addition to breaking six ribs, he fractured three vertebrae in his neck and back, leaving him paralyzed from the chest down.  After one week in the ICU in Reno, NV, and four weeks at a rehabilitation center in San Jose, CA, Jason returned to our home to begin the next phase of his recovery process.  As terrible as his accident was, everything since the moment he went over his handlebars has really gone our way.  He’s made remarkable progress and has handled this whole situation with grace and courage.  While he’s not yet walking, we are anticipating that he will begin therapy with leg braces in the new year.  If you’d like to keep track of his progress, please visit the blog I began while he was in the hospital:  jasonsroadtorecovery.blogspot.com

We travelled a lot prior to Jason’s accident.  We rung in the New Year in London, spent a weekend in Paris, visited family on the East coast for two weeks in May, and visited Sonoma, Mendocino, and, finally, Lake Tahoe, for various bike events in the early summer.  Since the accident, we’ve stuck close to home, though Jason is beginning to prepare for a trip to London next April for a work conference.  Thankfully, all of our family has come to us.  We had family with us for the first three months after Jason’s accident, which gave us a lot of time to adjust to our new lives.

Our little girl has grown by leaps and bounds this year.  Savannah began walking in March, not long after her first birthday.  She’s now running and climbing!  She cut her first tooth in February, and now seems to have a mouth full of teeth (I think last count put her at 14).  She has a huge vocabulary, and is particularly fond of making animal noises.  Savannah loves tea parties, her enormous book collection, music (especially drums), and art.  She began going to Google’s preschool in January (two days a week), and will continue that schedule through the fall, at which point she’ll move up to full-time, and I’ll return to teaching.  

Our puppy, Sonja, has had a great year, and has shown a tremendous amount of patience with Savannah.  Savannah thinks she and Sonja are best friends, but I’m not sure that Sonja always agrees.  Savannah spends large portions of her day trailing after Sonja, trying to hug her, kiss her, dress her up, or just imitate her.  It’s really sweet.

My dissertation prospectus, on theatricality and Calvinism in the 18th century, was accepted in May, and I’ve been lucky to be free of teaching responsibilities this academic year, so that I can get some research done.  This flexibility and freedom in my schedule also allowed me to be with Jason in the hospital and at almost all of his therapy appointments.  I’m headed to the archives and libraries in Edinburgh for a few weeks in January, and while I’m definitely not looking forward to leaving Jason and Savannah behind in California, it will be good to get more work done on my dissertation.

We hope that this card finds all of you happy, healthy, and enjoying the holidays with those you love.


All of our love,

Ashley, Jason, Savannah, and Sonja

Flexibility

If I had to give one piece of advice to new SCI-ers, it would be to remain flexible in all situations.  You have to be able to roll with the punches and deal with the unexpected pretty much on a daily basis, so it doesn't do you much good to get hung up on the little things that (inevitably) go wrong.  Oh, but this is easier said that done some days....like today.

I had today all planned for us.  Jason took a vacation day from work and, after two (supposedly) quick appointments in San Jose this morning, we were going to head to the Monterey Bay Aquarium for the afternoon.  The morning went well.  We got out the door by 9:15...before that we'd gotten everyone showered and dressed, taken Sonja to the kennel (we were planning on getting back late, so thought she'd enjoy a day with other pups out in the country), and I'd even been able to make beds and fold a load of laundry.  Excellent.  Jason's first appointment was with Dr. Shem, his Physical Medicine and Rehabilitation doctor.  He was her only appointment this morning, so we expected things to go pretty quickly, as it was just a routine check-up.  She ran late.  It wasn't such a big deal, though, as we still had another afternoon appointment.  The meeting with Dr. Shem went really well.  She ok'd the plan for braces in the new year, and was really excited by all the progress Jason has made.  We also talked with her about having a new ASIA exam done on Jason at his next visit in late January.  The ASIA exam determines complete vs. incomplete injury.  She also answered all of our questions on clinical trials and things like that.  It was a very productive meeting.

After the appointment with Dr. Shem, we went to lunch and then headed over to what should have been a quick appointment with Jason's wheelchair vendor.  He's been having some problems lately with the height of his seatback, so we were hoping to get that resolved.  I expected this to last about 30 minutes max....it took closer to 1.5 hours...ugh.  By the time we finished there, there wasn't much point in driving to Monterey.  Savannah would have only had around an hour in the aquarium, so we came back home.  I was really bummed by this...I'm actually not sure why it's bothered me so much.  In the grand scheme of things that have occurred in the last 5 months, missing out on the aquarium is not that big of a deal.  This would have been, though, our first big family outing since the accident (we haven't really had a FULL day out of the house since Jason's accident), so I was excited about that.  I think I'm also irritated by the fact that these medical appointments almost always end up taking significantly longer than they should....it gets old.

Anyways, we're going to try the aquarium again on Sunday.  Hopefully, it won't be crazy busy (which is why I wanted to go on a Wednesday).  Savannah will love it, I think.  Sonja, unfortunately, will be relegated to her crate for the day.

Hope you're all doing great :)

Love you all,

Ashley

Five Months

Five months down and, I must say, life is beginning to feel normal again.  Jason continues to amaze me with his persistence and his progress.  For those of you keeping track at home, here’s where we’re at...

Mobility:  There’s very little that prevents him from getting around now.  He can manage curbs, stairs (if the situation really demanded it.  In wheelchair-friendly California, this is not much of an issue), transfers (the transfer board is rarely seen these days), and general maneuvering.  He’s begun taking the shuttle recently, and will wheel himself down to the BART every morning for that.  He’s also beginning to get a bit more adventurous with work-venturing further afield for meals, interviews, and other obligations.  

Pain:  N/A

Exercise and Therapy:  5 hours per week at SCI-FIT.  A bit more than that through December, actually, to make up the time he’ll lose when they’re closed for Christmas.  He also wheels to/from the shuttle stop and does stretching exercises at home every day.

Daily Life Activities:  He can now watch Savannah if I need to run errands (it’s soooo nice being able to run to the grocery store without a grabby toddler on my hands!), take Sonja out on a (short) walk on his own, do laundry, clean the kitchen, clean up the bathroom, etc, etc.  There’s not much he can’t do.  If I had to note the biggest change over the last few weeks and months in this area, it would be that he’s making a really concerted effort to be more active as a husband and father.  When he was first injured, one of the biggest questions we had was how parenting would change with Jason in a wheelchair.  I think he’s realized now that the wheelchair places only (relatively) minor limitations on him as a parent.  As he’s gotten stronger, he’s begun doing more with Savannah.  Now, he can get out of his chair onto the floor to play with her puzzles, read books, or whatever else she’d like to do.  He can interact with her a lot more now.

Sensation/Motor Control:  I don’t know that there’s a lot that’s “new” this month, but what we have seen is that the sensation and control that Jason’s regained below the level of injury has gotten stronger and more consistent, which is very good.  He’s also feeling a lot of “deep touch” in his legs.  e.g. He can feel the tightness of socks on his feet, that his hip muscles are tight, and so on.

Biggest Issue at the Moment: His seat back on the wheelchair.  He was fitted for his wheelchair only a few weeks after his accident, so they ordered him a chair back that’s relatively high (to give more stability, which most people with a T4 injury level need).  Now that he’s gotten so much back, the seat back is getting in the way and needs to be substantially lower.  We’re meeting with the wheelchair vendor next week and, hopefully, we can find a way of switching out the seat backs that does not involve completely buying a new one.  

Biggest Success: Graduating PT, watching Savannah solo, walking Sonja.

In the next month, we hope to.....  Enjoy Christmas with our family, travel a bit (we’re hoping to take Savannah to Monterey next week), and keep moving forward.

Coming up on the six month mark is a pretty big deal, as most people we’ve spoken to made their biggest advances around months six and seven.  Jason and I have talked a lot about this, and we’re a bit torn about how to view this next period.  Obviously, Jason will continue to work as hard as he can towards a “full” recovery, but, with so much already regained, can we realistically expect much more?  I think this is the worse part of SCI-the not knowing.  Not knowing how much he’ll recover. Not knowing if there will be a cure for this (actually, I think the science for a cure is there, but many of the clinical trials have encountered road blocks due to funding being cut or because people get anxious about stem cell research). The uncertainty is tough.  I try to not focus on this too much, because, at this point, our worst case scenario is that Jason remains where he is, which is great, really.  It’d still be nice to have a crystal ball on occasion :)

I hope you are all doing well, and enjoying the holiday season!

Love you all,

Ashley

The Great Car Debate

We've been planning to buy a new car in the spring for some time (pre-accident actually).  Our TSX, which we really do love, has gotten too small for our needs.  When Jason was first injured, I was worried that I would have to go out and buy one of those big, wheelchair-accessible vans before he left the hospital.  Thankfully, one of the nurses at the rehab center set me straight and told me that, with the level of injury Jason has, there was no reason why he couldn't get in and out of a sedan on his own.  It's been nice to have time over the last few months to think through our car options, and decide what makes the most sense for us, given Jason's level of injury.  Problem is, we can't really decide what is the best option.  I think we've more or less decided against going the fully- accessible route.  Whatever car we get will need hand controls installed, so that Jason can drive (I think he's really looking forward to being able to do this), but there's no real need for full ramps and things of that nature.  We've joked in the past that we'd never get a mini-van, but the main reason for that is Jason wouldn't be able to get in and out of a van unless it had the ramps.  Right now, we're thinking about a Subaru Outback, maybe a Mazda of some sort, and Jason's recently begun looking at a 4-door Mini Cooper (Actually quite big, despite its name).  We'll probably look at some other SUVs...though those tend to be high off the ground.  Really, we just need storage room and something lower to the ground.  Beyond that, I think we're open to anything.  Let me know if any of you have ideas for things we should look into.

In other transportation news, Jason began taking the shuttle to work today.  I think it went reasonably well this morning, and hopefully will be okay tonight.  As with any change, it'll probably take a little bit of time to get accustomed to the new normal.

I hope you all are well.  I'll post again in a few days...we're coming up on 5 months since the accident, so it's time for another "official" update.

Love you all,
Ashley

The Language of SCI

I've posted on here before about the difference between a "complete" or "incomplete" spinal cord injury.  There's a lot of disagreement within the medical community about what classifies as complete or incomplete-for some, anything short of a severed cord is incomplete, for others it has more to do with the neurological function (or lack thereof) below the level of injury.  Jason has had mixed results with this classification.  On his admittance to Santa Clara Valley Med, the resident who examined him said he was a complete injury, and then proceeded to outline a rather dire prognosis: no walking, limited gains back in motor or sensory function...get use to the chair, essentially (I have seriously negative feelings towards this particular doctor...Jason refers to him as my nemesis, but, I'm sorry, you don't say that to anyone 5 days after a massive accident).  By the end of his stay, another doctor indicated that, because of the tremendous gains he made while in rehab, he was actually an incomplete injury. This doctor never changed this classification in Jason's records, though, so he is still technically a complete.  At a lot of levels, this is just an issue of semantics.  What Jason is actually classified as doesn't matter much-he's working hard, making a ton of progress, and getting back to living a "normal" life.  Down the road, however, the complete/incomplete distinction could become important.  While we've not yet experienced this, we've heard from others that insurance will deny therapy and other services to those with complete injuries.  So, we've been talking a lot lately about getting in touch with his doctor (no small feat...I've been playing phone tag with that office for weeks now) and trying to have Jason officially re-evaluated. Better to deal with it now before it becomes a big issue with insurance.

In other news, Jason is doing really well.  I'm adding some videos to the post to show what he's been up to.    He's still getting back sensation and motor function.  We've found that, of late, he gets motor function back before sensation.  He's still working hard towards being able to get the leg braces in January/February.  I don't think this will be a problem.

Work is going well for him-he's up to 4 days a week in the office and will begin using the Google shuttle next week.  He's actually going to meet the shuttle driver and try out the ramp tomorrow afternoon.  

Watch carefully...Jason is using his hip flexors to move his leg around :)

SCI-FIT workout

Love you all!

Ashley

Thankful

Happy Thanksgiving!

More than any other year, I feel that there is much to be thankful for today:  the doctors who stabilized Jason, the nurses who were there with us, day in and day out in the early weeks of his recovery, the hospital staff at both Renown and Santa Clara, the physical/recreational/occupational therapists, the extraordinary recovery Jason is making, the folks at Google who supported Jason from day one of the accident, the families and teachers at Savannah's school, our friends here in the Bay area who are always around to help, and the friends and family on the East coast who did not let distance stop them from reaching out to us.

This has been a difficult year for our family, but even in the darkest moments, we've known how loved we are.  For that, we are so very thankful.

I'll be back in a few days with an actual update.

Love you all,

Ashley

PT Graduate

Another milestone down!  Jason finished physical therapy at Santa Clara Valley Med yesterday..woohoo :)  His physical therapist was very pleased with the progress he's made in the past four months, and seems pretty certain that Jason will be back in the winter to get fitted for leg braces.  The braces won't allow Jason to walk with regularity (And his gait will be something akin to a Frankenstein walk), but it will enable him to walk short distances (with a walker or crutches) or get up and move around to exercise.  The braces will be a great start and, hopefully, will lead to more "normal" walking in the future.  I know I often talk about how amazing Jason's recovery has been, but for those unfamiliar with SCI, what he's accomplished might not seem so substantial.  To put it in perspective, the first doctor who examined Jason at SCVMC told him he'd never walk again and that he'd be lucky to regain two inches of sensation or motor control below his level of injury (T4, around the nipple line).  He now has some form of feeling or motor control to his pelvis.  It's remarkable and we are both fully aware of how lucky Jason has been.  This is not to say that there aren't still tough days or difficult issues to contend with, but we are both acutely aware of how much worse this could have been.  Thank you to all of our friends and family who have kept Jason in their thoughts and prayers.  It's made a difference.

Today has been a good, and busy, day.  Most days are busy these days :)  Today, Jason had SCI-FIT for three hours and, afterwards, we trekked down to San Jose to go to the Abilities Expo.  The Expo has vendors and exhibits that appeal to the wheelchair crowd (Abilities Expo is an uber-PC way of saying it's for people with disabilities...Jason and I have had LOTS of talks about the language surrounding disabilities, but perhaps that's another post for another day).  I think the Expo would be great if we were in the market for a new wheelchair or a massive conversion van with wheelchair ramp, so maybe we'll return in another few years, but there wasn't too much of interest today.  We did run into the recreational therapists from SCVMC with some of the current inpatient SCI folks.  We stopped and chatted for a bit and one of them said to Jason, "You know, I remember when we took you on your first outing to the Farmer's Market." That outing took place about three weeks after his accident and was something of a rough day.  It was his first time out of the hospital in a wheelchair, he was uncomfortable, still in a neck and back brace.  Just a few months later, though, and he was wheeling around chasing after Savannah (who decided that she would not tolerate a stroller), happy and healthy.  When you hear people tell you things will get better, it can be hard to believe them, but lo and behold, things did get better :)

I hope you are all enjoying your weekend and getting excited about the upcoming Thanksgiving holiday!

Love you all,

Ashley

Four Months!

Today marks four months since Jason's accident.  Despite some setbacks, complications, and difficult days, Jason is doing amazingly well.  Even though we're still very new to the world of SCI, I feel like we've become pros :)  For those of you keeping track, here's where we are at four monts out...

Mobility:  Awesome. He's gotten to where he can do some transfers out of the car without the transfer board. He can get off the couch without a board (I remember when he couldn't get off the couch without me wrapping my arms around him and dragging him off, so this is a HUGE improvement!). He's also gotten really good with wheelies, going over thresholds and other obstacles while out and about. And he can now get down a flight of stairs in his wheelchair.

Pain:  Not a problem, except for when he's sore from SCI-FIT. That's an acceptable pain though :)

Exercise and Therapy:  Jason has one more official PT session in November, and then he'll be done until he begins using braces (hopefully in mid-to-late January). He still goes to SCI-FIT for five hours a week and, with the exception of days of inclement weather, he accompanies me on Sonja's walks in the evenings.

Daily Life Activities:  He is fully self-sufficient AND he now helps a lot more with chores and Savannah. Jason can do the laundry, change diapers, dress Savannah, put Savannah to bed, and even watches Savannah by himself while I walk Sonja (or venture down to Starbucks for coffee...).

Sensation/Motor Control:  So, some exciting developments here! He can feel pressure in his legs-I can massage his foot and he'll feel that, if I use the leg massagers on him (essentially air pressure boots, if that makes any sense) and he can feel them tightening and loosening up on his legs. He's gotten a good bit of motor control in his hip flexors, which is great. He'll need a bit more strength there in order to use the braces in a few months. He can feel the muscles stretching in his upper legs and hips. He's gotten a lot more control in his back, due to the workouts at SCI-FIT. His core abdominal muscles are getting so much stronger, as is his balance. During his workout last week, the trainers made him pull a heavy rope (similar to the type you'd be force to climb up in grade school gym classes) with barbells attached to them while sitting straight up. Definitely a test of balance and ab strength :)


The nerves in his legs are also beginning to "wake up," which is a double edged sword. On the one hand, it is undeniably great that more of his nerves are coming online. But, with this comes increased leg spasms. When the nerves "re-awaken" (I'm sure there's a more scientific term for that), they're a bit jumbled and the messages sent to the brain get scrambled, causing his legs to go a bit crazy. Hopefully, once the new nerves get sorted out, the spasms will calm down. Hopefully, his standing frame will be here by the end of the month. We know that helps with spasms...

Biggest Problem Area: Dealing with the new spasms. Not too many major problems at the moment, really.

Biggest Success: New gains in sensation and motor control!

In the next month, we hope to.....  continue making the adjustment to life without family members in residence with us. We've had some bumps over the last few weeks with this, but we're constantly tweaking our routine in order to make life better and easier. Also, come the beginning of December, Jason will begin taking the shuttle to work four days a week. I'm looking forward to not driving to Mountain View all the time :)

We hope you are all doing well!


Love you all,


Ashley

Anyone want some bike equipment?

We finally decided that it was time to do something with all of Jason's biking equipment, so, before I deal with Craigslist, I thought I'd check to see if any of our friends could use it all.  So, here's what we've got...

• Thule Bike Travel Box (like this http://www.amazon.com/Thule-699-Round-Bicycle-Travel/dp/B0018THWX0/ref=sr_1_1?ie=UTF8&qid=1320776503&sr=8-1)
• Topeak Bicycle Repair Stand
• A Variety of Bike Jerseys (sizes L and XL) 
• Variety of Bike Tools (I don't know what most of them are, but I imagine you can do things like change tires and mess with the chains...I'm not quite an authority on bikes)

You can have what you'd like, but if you want one of the bigger items (bike box or stand), you'd need to be able to come to Fremont to pick it up.

I've asked Jason is he misses biking a number of times since the accident.  I won't quote him exactly, because it's not appropriate language for a family-friendly blog :)  But, the gist is that, while he misses the ability to go bike riding, he does not miss the bike, since that's what put him in the chair.  Even if he regains the ability to bike, he won't be needing any of this stuff-it's for fairly serious riders and, at best, we'll be a family that owns a couple of Schwinns and goes riding around the lake.  

If you'd like something, send me an email at ashley.leyba@gmail.com by the end of the weekend.  Otherwise, craigslist it is.  

I'll be back more tomorrow with a monthly progress report (we're at 4 months post-accident and there have been some exciting developments!)

Love you all, 

Ashley  

Some Things are Unbreakable

Not long after Jason was first injured, we began looking around the internet, trying to find resources on SCI.  One of the best (for us) has been the CareCure forums set up by some doctors and nurses out of Rutgers University.  When doctors have been slow to return phone calls (or we just have a random concern, like...how do you put a toddler in a car seat when you're in a wheelchair?), the folks in the CareCure community have been there to offer reassurance, helpful tips, and advice.  There is a special forum for caregivers (I REALLY hate that term) on the site and, it was through that forum that I found a book by Kate Willette titled Some Things are Unbreakable.  In this book, Willette details her husband's injury in a skiing accident that left him a C5/C6 quadriplegic, and the first year of recovery.  I have only read snippets of the book and, while it's a story I can certainly relate to (even if quadriplegia has a lot more issues than paraplegia), it was the title that really gave me pause and made me think.  Much of SCI focuses on that which has been broken, torn, or otherwise injured: the bones, the muscles, the spinal cord that has been bent and bruised.  It's very easy to focus on what has been lost or changed, but this book (or its title at least) has reminded me to focus my energies on those things that are unbreakable:  our love, our family, our faith.  These are the enduring things that, while certainly tested by this accident, have not been broken or weakened.  When I have a difficult day (thankfully, less often this week!), I think about this and it helps me remember that all the important things in our life have only gotten stronger and better.

On another note, we're hoping to move some furniture around in our house later this month.  Now that Jason has been home for a while, we have a better sense of where things could be moved to make life a bit easier for him.  We've also ordered toddler rails for Savannah's crib and another piece of furniture for her room.  I'd like to move her bed into our room (since she sleeps in there every night right now anyways...), and make her room more of a playroom for her.  I can not, however, do this by myself.  Well, maybe I could, but my chiropractor would be none too pleased.  So, if any of our Bay area friends are available in a few weeks (I'm thinking maybe the first Saturday in December?  The furniture has not yet arrived, but should be here by then), I'd be super appreciative of the help.  Plus, I'll feed you.  Familiarity with tools would be a plus :)

Love you all,

Ashley

It's (Slowly) Getting Better

Last week wasn't much fun, to tell you the truth.  Jason had an infection, Savannah was a little sick AND teething (really, I'm not sure if there's a better combination in a baby), and Sonja decided that she should just start randomly peeing all over the house, because, really, what else would I rather do than clean up dog pee five times in a day (that was a personal record for her)?  Jason and I joked that we'd been having it too easy...things had been going too well for us, so it was only fitting that we have a rough week.  It's too bad, though, that it was the first week were fully on our own.  But, things are starting to improve.  Both Jason and Savannah are feeling better (though the teething is still something of an issue) and Sonja decided to behave last night!

In the midst of all this chaos, however, Jason was forced to help out in ways he didn't know he could.  He has changed Savannah's diapers (for the first time since the accident), gotten her fully dressed and ready to go in the morning, he can start laundry for me (when he discovered this new feat, he began by prefacing the statement with, "I'm not sure if I should tell you this, but..."), and he's almost to the point where he can take Sonja out for a short walk around the apartment complex.  Sometimes you need challenges and problems to force you to push yourself further, so, in this regard, last week was really good for us.

Jason is still going to Google twice a week, and working from home the other three days.  In November, he'll ramp that up to three days per week in the office.  That'll actually start next week, because he has to get some routine tests done at the hospital on Tuesday.  The Google shuttle will begin picking him up for work in December, at which point he'll be in the office four times per week.  He'll stay at four times per week for a while, since he has SCI-FIT on Thursdays, and it doesn't make too much sense to drive in to Mountain View, only to have to leave two hours later for therapy. Speaking of SCI-FIT, Jason's therapists have really begun to notice some changes in Jason.  He's getting a lot stronger in his hips (which he needs in order to start the braces in January), and is getting much more control over his movements.  We're really lucky that SCI-FIT is so close to us-some of the patients there travel up to three hours one way, just to be able to take advantage of their program. I'm certain that Jason would not have made all of these gains so quickly without this program.

And now, on to some pictures!  These are from the last few weeks and, per usual, are primarily of our sweet little girl.  Sorry that they're a bit out of order.

At our apartment complex's harvest party

She wasn't a fan of getting her picture taken...

Jason at PT

Discovering new ways to play

On Our Own

Well, we knew it would happen at some point...we've been on our own since Saturday morning, when Jason's stepmom, Kim, headed back to Virginia.  We've been incredibly lucky to have our parents stay with us for the past three months while we've adjusted to our new lives.  There were MANY days that their presence made a difficult situation better.  I expected the first few days sans parents to be bumpy...and they were :)  The past few weeks have gone by incredibly smoothly, so I guess we were due a speed bump or two (or three or four).  Jason experienced a few complications over the weekend and into this week-nothing too bad in terms of possible SCI complications, but enough to throw a wrench in our routine.  We think we've gotten them under control, and have made the necessary adjustments to his meds, but, in the process his work schedule got a little off-track (he normally goes to the office on Mondays and Tuesdays, but he had to work from home yesterday and needed to leave work a bit early today).  So, as much as this weekend was rough, we got through it just fine.  I think if we can navigate a weekend of complications on our own, then we'll be more than alright when things settle down again.

And, we're not totally on our own anyways.  We've got a great network of friends here in the Bay area that I know are there to help should we ever need it.

Other than that, we're doing well.  The rest of the week should be pretty busy-our little social butterfly, Savannah, has multiple Halloween parties to attend, Jason has his standard SCI-FIT appointments, and I'll be busily chauffeuring them between these various engagements :)

Apologies that this isn't a longer post.  I felt like I had more to write when I sat down, but I'm exhausted...I'm definitely feeling the loss of our "safety net."  I'll try to write more next time.

Love you all,

Ashley

Today was a GREAT day :)

First off, the videos from Sunday's post should now be working.  Not sure what went wrong there...

And now, on to the exciting news of the day.  Jason got cleared to remove his "training wheels" from his wheelchair.  His PT thinks he's doing great with wheelchair mobility: he can go up and down curbs, and even knows how to go down a flight of stairs in the chair, should the need arise.  This is a big deal in the wheelchair world-he's not a "rookie" anymore.

On top of that, his PT began talking with him about when he'll be ready to get braces to start with walking :)  Protocol dictates that he wait at least 6 months post-accident before starting with the braces, so he's still got three more months to go, BUT he now has a clear list of what needs to happen in that 3 month period in order for him to move forward.  He has to be able to do 50 continuous dips (to make sure he has the endurance for walking) and needs a bit more movement in his hips.  I have a feeling that he'll have all this done before his 6 month checkup, but some prayers and good thoughts sent our way would be much appreciated.

And...to save the best news for last...he's got some more sensation!  Woohoo!! This morning, he was able to (faintly) feel me massaging his right foot. It's not a very strong feeling, but, he closed his eyes and was able to correctly indicate when I started and stopped massaging, so we're extremely optimistic!

Some days can be tough, but then you get days like today...and our spirits are lifted and renewed.

Love you all,

Ashley

Catching Up and Getting Away

Hi Everyone!

Sorry for the delay between posts.  I was waiting to get some new video from SCI-FIT before posting anything new...I think you'll all agree that the wait was very much worth it.  But, before I get to the videos, let me catch you all up on what's been going on in the last week or so.

Jason started back to work on October 3.  He was supposed to work from home for the month of October, before slowly transitioning back into the office beginning in November.  Well, as I've learned throughout this whole recovery process, Jason doesn't do slow :)  He went back into the office Monday and Tuesday of last week.  It went really well.  He was definitely tired when he came home on Monday, since wheeling himself around the Google campus is a bit harder than doing the same at home, but, overall, it was a great experience.  The new plan is for him to continue going two days a week for the next couple of weeks, and then slowly ramping up to full time (in the office) in early December.

He's still having some issues with his legs/feet swelling after a long day in his chair, but we're looking into a few options to make that less of an issue.  I got him a foot rest to use at home at his computer, and we're hoping to rig something similar up at Google.  Also, I just ordered some leg massagers for him that are supposed to be really great for helping with circulation.  Fingers crossed, that will work.

Jason and I went on a little mini vacation this weekend, thanks to his stepmom, Kim, agreeing to watch our girls for us :)  We didn't venture too far afield from home, just in case something went awry (or I decided that I couldn't be away from Savannah for so long...).  It went wonderfully.  We got a chance for some alone time (and went on a few "real" dates to the movies and a nice restaurant!), and Jason got to see that travelling out of his comfort zone wasn't really all that bad.  Prior to the accident, Jason traveled for work on occasion, and he'd like to be able to do that agin.  He's actually tentatively planning on attending a Selenium conference in London in April, so this little trip was a way to begin prepping for that.  We've learned that the best way to ensure a smooth trip is to over-plan and over-prepare....thankfully, I really like planning :)  So going to London should be a breeze...

And now....the videos....

Working on the FES Bike

More hip adductors are coming online :)

Practicing his balance.  He's gotten SO much better with this!

A different way of doing the bench press :)

Ok...so this isn't Jason.  I was trying to catch Savannah trowing her toys off the couch, over the dog bed.  Instead, I got this....

Hope you all are doing well!

Ashley

Three Months

Today marks three months since Jason’s accident.  It feels like it’s been a lot longer than that, probably because our lives have changed so dramatically in that time.  It would be easy to be sad today, but instead we’re going to celebrate what strides he has made in this time period.  Honestly, his recovery up to this point has been borderline miraculous, so there is so much to celebrate.  For those of you keeping track at home, here’s where we’re at...

Mobility:  VERY good.  He can do all transfers independently and, since moving to his new wheelchair, he has started ditching his transfer board for most transfers.  He still needs it for the car, but that’s a pretty big transfer (close to 12 inches between the two seats), so it’ll probably be another month or two before he can get rid of that one.

Pain:  Not much of an issue.  He’s off of all pain medications, including ibuprofen (though he’ll take this on the rare occasions pain is a problem).  His ribs seem healed and his incision area on his back doesn’t bother him.  He seems to be in the lucky 50% who doesn’t have to deal with chronic pain post-SCI.

Exercise and Therapy:  Jason is finished with occupational therapy, and goes to physical therapy at the hospital once a week.  He’s working primarily on wheelchair mobility with his PT.  He can do wheelies, and is learning how to safely go down stairs in the chair.  He can also get from the floor to his wheelchair on his own.  I’m not sure how much longer he’ll be doing PT-at least through October, and probably a bit into November too.  He also goes to SCI-FIT twice a week, for two hours on Thursdays, and three hours on Saturdays.  This is a pretty intense regimen, but he’s made tremendous gains thus far.  In addition to this “formal” therapy, he does stretching exercises at home, and tries to get out with Sonja when possible.  We’ve gotten kind of lazy with this, though, because all of our visiting family members have been great about walking Sonja.

Daily Life Activities:  He can do everything on his own.  Occasionally, I’ll step in to help when we’re running late, but I’ve left him on his own for several hour stretches and he’s fine: he can get in and out of bed, shower, make his own food, get set up on the computer, etc, etc.  

Sensation/Motor Control:  His biggest gain in the last few weeks has been his hip control.  He’s also feeling “deep touch” in his lower belly area.  He still can’t consistently feel touch around his belly button, but if he pulls the hair in that area, he can feel that.  When sensation returns, it tends to return this way, deep to surface.  When he works out at SCI-FIT, he has, on occasion, been able to feel the muscles flexing in his upper thighs.  According to his therapists there, all he needs is a bit more motor control in the hip flexor area, as well as some quad control, to be able to start walking with braces and a walker.  That’s really exciting :)

Biggest Problem Area: Getting faster with his morning routine.  Trying to get this down to a reasonable amount of time, so that he’s ready to take the 7:30am shuttle come December 1.

Biggest Success: Heading back to work full time, regaining hip control, getting the new wheelchair...so much to choose from!

In the next month, we hope to.....  continue the transition back to work (he’s heading in tomorrow for a full day at the office), see more gains with motor control and sensation.

Let me know if I’ve left something out that you’d like to know about, or if you have any questions that I haven’t gotten to.

Love you all,

Ashley

Back to Work and Other Adventures

Jason went back to work on Monday.  He’s working from home right now, with plans of transitioning back into the office beginning in November.  I’ll be surprised if he takes that long, though.  He already asked last night if I would mind driving him to Google some time next week.  :)  Even though he was pretty anxious about “officially” being back to work, it went really well.  He seems to be enjoying what he’s working on and has even volunteered to do some phone interviews (for those of you who know him, you’ll know exactly how unusual it is for him to voluntarily take on extra interviews).  While he’s working (and on the days Savannah is at school), I’ve been working on my dissertation.  I’ve also begun planning my first research trip to Edinburgh.  I’m planning on heading to Scotland in early January for about two weeks.  I’m not quite sure how I’m going to be able to (emotionally) leave Savannah and Jason for that long.  Gail is planning to come out here to help with day-to-day things, so I’m not worried about them.  Just not sure I can be away for that long...

So far, the wheelchair is working out nicely...with a few exceptions.  It’s definitely more maneuverable, but his feet have begun swelling up pretty badly after a few hours in the chair.  We talked to his PT about this during yesterday’s session, but she wasn’t quite sure why the chair would cause this.  She suggested raising the foot plate a little bit, which we’ll do later today, and to continue some of what we’ve already started: getting him to raise his legs up (which, unfortunately, means getting back in bed for an hour or so at mid-day...thankfully, he can take his lap top with him and keep working), using compression socks, and limiting salt intake.  Hopefully, this will work itself out within a few days, because it has made him more than a little uncomfortable.  The chair also seems to lead to an increase in leg spasms once he’s out of the chair.  He doesn’t have any while sitting (the spasms have actually been fairly under control the last 2 weeks or so), but, as soon as he gets out of the chair, his legs rebel.  In the grand scheme of potential SCI complications, however, these are pretty minor problems to be dealing with.  It may take us a few days, but we’ll figure out how to get it all under control.

Jason’s dad is here with us now and is becoming accustomed to the routine around here.  I think it’s been good for him to see that Jason is doing well, in addition to seeing the hospital Jason was in for so long, going to PT sessions, and, tomorrow, going to SCI FIT with him.  Savannah has definitely enjoyed getting to spend so much time with all of her grandparents over the last 3 months :)

In other news, we’ve decided that we simply did not have enough going on in our lives, and, as such, decided it was time to begin potty training Savannah.  We’re only doing VERY basic potty training right now-having her sit on her potty chair (which she calls her “bucket”) in the morning and evening before bed.  We’re mainly just trying to get her comfortable with the whole concept of it all before proceeding any further.  Yesterday morning, she was doing really great with sitting on the toilet and then, all of a sudden she stood up, squatted down....and peed all over the carpet.... So, yeah, we need to work on the concept of WHY she’s sitting on her bucket....  Thankfully, Sonja was close by and came in to clean up (gross, I know).

So, that’s what’s going on with us.  Hope all is well with everyone.

Love you all,

Ashley

New Wheelchair!

Yesterday was the long awaited day...Jason got his new wheelchair and got to ditch the heavy, bulky one that he had when he checked out of the hospital in August.  It’s VERY nice and lightweight.  He can maneuver so much easier now-and can actually access our kitchen with ease.  Transfers are also quite a bit easier now, because he can get the chair much closer to whatever he’s transferring on to.  It also fits entirely into the car’s trunk without me having to do anything crazy to get the trunk to shut...that last one was a pain in this regard.  We couldn’t really have anyone other than Savannah in the car because of how much space the chair took up.  Now, we can have adult passengers!  And I can take the stroller with us, too....which Savannah might not like.  She enjoys getting to ride with Daddy in his chair when we’re out and about.

When we were at the hospital yesterday, we ran into the psychiatrist Jason had while he was inpatient at Santa Clara.  The fact that he even got assigned a psychiatrist shows how comprehensive the rehab program is at SCVMC.  They’re really concerned with rehabilitating the complete person, so they make sure patients have access to recreational therapy, speech therapy, and psychiatric counseling, in addition to the traditional occupational and physical therapies.  Anyways, we ran into her while we were getting lunch in the cafeteria (the hospital makes a surprisingly good sandwich) and she asked how Jason, the baby, and I were getting on.  We updated her on the gains with sensation, mobility, etc, etc.  But, after going over the major accomplishments, we just looked at each other and said, you know what?  We’re happy.  And not in a “happy given the circumstances” kind of way, either.  Genuinely happy.  Our relationship with each other is the strongest it’s ever been (and it was quite strong going into all this), we have a lovely, healthy daughter who brightens our days, we have the most amazing and supportive group of family and friends anyone could ask for, and we’re doing all we can for Jason’s recovery.  I think we both really feel at peace with where we are now.  Jason is working hard at recovery and we both know that we’re doing all we can do in that regard.  When Jason was first injured, neither of us knew how things were going to turn out.  The future was terrifying and so unknown.  It’s still unknown, but I don’t feel scared anymore.  If Jason stays where he is now in terms of recovery, we’ll be fine.  We’ll be more than fine.  We’ll have a good life.  (We HAVE a good life)  He’s independent and can do anything he wants, wheelchair or not.  I truly believe, though, that he’ll walk again.  Now that we have learned more about spinal cord injuries, we’re much better prepared to deal with everything that comes our way before he does start walking.  

I know I say this a lot, but thank you all for supporting us through this, and for all the support and love we know we’ll continue to get as we continue the long recovery process.  We’ve both appreciated the cards, well-wishes, and prayers sent our way.  You’re all amazing.

Lots of love,

Ashley

Wanna see something cool?

That's from today's session at SCI-FIT.  Now, he's not using his legs, but he is able to move his hips around, which is a HUGE advance for him!  He's only three visits in and he's already making great strides. I have to admit, I teared up a bit when he started doing this on his own today.

I'll keep this short on words and big on pictures and videos, since I've been remiss on the visuals of late.  A few things to note:  Thursday is when Jason gets his new wheelchair (very excited about this!), my Dad heads home on Friday (he's been such a big help), Jason's dad gets here on Saturday and will quickly be initiated into the household routine, I'm sure, and then, on Monday, Jason begins back to work.  He's working from home for the time being, but we're a little nervous about this transition.  As we've learned, it takes a few days to adjust to anything major, so we're expecting the first few days of next week to be a little on the rough side.  Do keep us in your thoughts and prayers as we navigate this next step to finding normal :)

And, without further ado, some pictures, mostly of Savannah because she's too cute not to include:

Already a fan of Apple....Jason's genes are strong :)

Daddy-Daughter art time

Love you all,

Ashley

Our Week

This has been quite a busy week around the Leyba household!  Jason had PT and a visit with the rehab doctor on Tuesday, SCI FIT on Thursday, and a (much anticipated) visit with the masseur at the chiropractor’s office today.  Savannah, on the other hand, had school Monday and Tuesday, swim and art classes on Wednesday, and gymboree and a well-visit (and vaccines) this morning.  I also slightly re-entered the academic world this week:  I went to a workshop last night and (gasp!) worked on my dissertation a bit.  I’ve been in the car A LOT, and we’ve definitely been grateful to have my dad around this week.  Jason’s appointments would have been a lot more crazed had Savannah been there :)

PT was pretty standard this week.  Jason did some stretching, worked on going from a low to high mat (to simulate moving from floor to chair, which he’ll get to next week), and spent 45 minutes in the standing frame.  Now that he’s spent that long in the standing frame, we can begin the process of getting one for the house (which means going through the process of getting insurance to approve it, which should be buckets of fun).  After PT, he met with his rehab doctor for the first time.  Even though he’s going to PT at the same hospital he went to for inpatient care, he’s gotten an entirely new group of doctors for outpatient care.  So, the visit was long, mainly because we waited quite a while.  Santa Clara is a teaching hospital, so we first met with a resident, who then went and reported to the doctor, and then we met with the doctor (and essentially re-hashed all we’d talked to the resident about).  We focused primarily on the issue of spasticity while we were there and have since made some changes to Jason’s medicines.  He’s still taking the same medicine, but increased the frequency he’s taking it (from 3 to 4 times/day).  Ideally, he’ll get to a point where he doesn’t need these-exercise and stretching should work for him, but we’re not there yet.  I’m happy to report that since changing his meds, things have been going REALLY well.  He still has some spasms, but they’re less frequent and less intense.

SCI-FIT was great yesterday.  I really feel good about this place.  They’re so optimistic, it’s really infectious.  Plus, it’s just nice to go to a place where being in a wheelchair is normal and there are others to talk to who are in the same boat that you are.  Jason was sore afterwards, but not as sore as after his first workout, so that’s improvement.  He goes back in the morning.

We went to visit Mark, one of Jason’s good friends from rehab, today.  Unfortunately, he’s back in the hospital in order to undergo IV antibiotic treatment.  It was great to be able to reminisce and talk about what has worked (or not) with them since leaving the hospital.  Much of adapting to life outside of the hospital has required flexibility and creativity, as well as an ability to keep trying new methods/things until you find something that works for you.  So, it’s always nice to trade ideas with other SCI-ers.  We loved having a chance to talk with Mark, his wife, and his son (who keeps up with his Dad’s blog over at hopeformark.blogspot.com).  Like Jason, Mark has a really positive attitude and is committed to recovery and living a full, happy life.

This weekend will start out busily enough-Jason has a 2 hour workout scheduled for SCI-FIT tomorrow, but, after that, things will slow down considerably.  I’m thinking about decorating for Fall with Savannah....of course, it would be lovely if it felt cool like fall around here.  Northern CA has been quite warm of late :)

Love to you all,

Ashley

Some Closure

Jason got his bike computer back last Friday.  He has been looking forward to this moment with a mixture of dread and excitement.  Dread because there has always been a part of him that worried he was at fault for his accident-that he was going too fast down that last hill.  On the other hand, he was really hoping to be able to fill in some of the blanks related to the accident.   Jason doesn’t remember much of the accident or, to be entirely honest, much of the week spent in the ICU in Reno (morphine will do that to you...).  He can remember some sounds, but has very little visual memory of the accident: he remembers beginning the descent, seeing a lake towards the end of Ebbett’s Pass, and then he remembers having a physician at his side trying to stabilize him.  He remembers bits and pieces of the hours following that: the airlift to Reno, the initial trauma consultation in the ER, having the gash in his head stapled (apparently, he says this didn’t hurt any), and that’s about it.  I’ve told him about the first day or two in the ICU, but, for the most part, that period is something of a haze for him, with only select moments remembered with anything approaching clarity.

What the computer recorded is as follows: he crashed going just under 40 mph, a few hundred yards past the lake he remembered seeing.  This means there’s only about 45-60 seconds of the course that he’s totally forgotten.  That made him feel better.  Also, 40 mph was not an unreasonable speed for that section of the course.  Plus, he does know from others who were at the event that that particular section was bumpy and had some debris in the road.  So, our original hypothesis that he hit something (perhaps debris, perhaps a pot hole) that caused his front tire to blow out, seems to hold up.  Based on his injuries, it would seem he went over the handlebars, hitting his forehead (this needed to be stitched up), the back of his head (his helmet was a mess, but it saved his life), lightly hitting one of the vertebrae in his neck, before landing, hard, on his back...in a stream.  The cold water in the stream reduced the initial swelling.  His accident happened around 2:30 or so.  He was in surgery in Reno, 90 miles away, by 5pm.  Because people acted so quickly, the damage was contained.  It could’ve been so much worse.  Honestly, it should’ve been so much worse, but he’s had some guardian angels looking out for him.

Knowing all of this doesn’t really change where we are now (which is a good place actually), but it does make Jason feel a lot better to know 1) he wasn’t at fault and, 2) more or less what happened.  

That’s the major news on our front.  He’s got PT and a meeting with his rehab doctor today.  SCI FIT on Thursday and Saturday, and (hopefully) a massage and chiropractic appointment on Friday...assuming the doctor today gives the okay.

Love you all,

Ashley