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