eLegs and Care Baskets

Some exciting news for us...Jason will be taking part in an eLegs trial at Santa Clara Valley Medical the first week of April!  This device is an exoskeleton (developed by a group out of Berkeley) that will allow him to walk.  Instead of me describing this, take a look at these websites/videos:


http://www.botjunkie.com/2010/10/08/berkeley-bionics-unveils-elegs/
http://www.engadget.com/2010/10/07/berkeley-bionics-reveals-elegs-exoskeleton-aims-to-help-paraple/


As I've talked about before, we're putting together care baskets for the folks on the SCI floor at Santa Clara.  We're hoping to distribute them the week that Jason is there for the eLegs trial.  If you're interested in helping out, here's what we need:

• Hygiene Products (this is probably the biggest area):

• Face wipes

• Toothbrush/toothpaste

• Baby wipes

• Travel Size shampoo/conditioner/body wash

• Nail care items (filing boards, clippers, etc)

• Entertainment

• Puzzles (Crossword, sudoku, word search, etc)

• DVDs (these will be donated to the rehab hospital DVD library, and not distributed in individual care baskets)

• Reading Material (popular novels, magazines, etc)

• Snacks

• Try for healthier options: nuts, granola/protein bars, dried fruit, etc

• Hard candy/Mints

• Miscellaneous

• Socks

• Water Bottles

• Notes of Encouragement

I’ll also include information on SCI resources and, ideally catalogues/magazines from companies that specialize in adaptive equipment.

If you feel moved to help out, try to do so by April 1.

Our address is:
Jason and Ashley Leyba
39440 Civic Center Drive #502
Fremont, CA 94538

Grief Spasm

I have only recently come across the term "grief spasm," but it seems particularly applicable to this life we're now living.  I don't often write about the more difficult aspects of SCI because I don't think most people want to hear about it and, quite honestly, we're in a really good place.  The initial shock and horror has worn off, and we're very aware of how lucky Jason has been.  That being said, there are still the occasional moments when the magnitude of what has happened hits me.  It doesn't normally last all that long, so I think referring to it as a "spasm" works.  I've gone weeks and weeks without really having any major meltdowns, so I suppose I was due one this past weekend.  And, really, I kinda brought it on myself.

Jason has new tires and, as he and Danny were working on them over the weekend, J realized that he didn't have a tool that he would need, so he asked me to run to the bike shop (wheelchair wheels are no different than bike tires) to grab the tool for him.  I said yes, not thinking it would be that big of a deal.  This was the bike shop Jason more or less lived in in the weeks leading up to Death Ride, and neither of us had been back to it since the accident.  We only ever went there to do stuff for his bike, so looking back, I'm not surprised it caused me some difficulties.  Anyways, I went inside, asked for the proper tool and, as I was checking out, I was overwhelmed with sadness and, yes, grief.  I saw all the people there with their bikes, and I was reminded of our other life..the "before" that we won't ever get to have again (even if there is a cure for SCI, we are too changed to go back to what we were before this accident.  This isn't really a bad thing).  It was too much.  Thankfully, I was able to get outside before I completely lost it (I'm hoping no one looked out at this moment...if they did, they probably wondered what part of buying a tire wrench was so upsetting).  When these things happen, I just let myself cry.  I work on the assumption that if I'm crying, it's probably because I need to get things out...no use trying to suppress it...I think that's when you run into problems.

This didn't last long.  I was able to pull myself together and finish my other errands without any problems.  I don't know that I'll be going back to that store again, though.  No reason to invite trouble.

I hope writing this doesn't give anyone the wrong impression (or cause anyone to start recommending counselors...we've both seen counselors since this accident).  We truly are happy.  We have a great life, but this doesn't mean that our lives (our at least my life) are free from these moments of sadness.  I can't write about Jason's feelings about all of this (We talk about it, of course), because we've both learned that, even though we are going through a lot of the same events, we are having very different experiences that neither of us can fully understand.  I will never really know what it's like to be told you'll never walk again, just like he won't understand what it's like to fear that the love of your life might die.  But that's okay.  As a couple, we're stronger than ever, and part of that strength is derived from this recognition of these differences.

I'll leave this topic alone for now...and will return in a few days with more uplifting material :)

8 Months!

We're eight months out from injury and doing pretty great, if I do say so myself.  I know that I normally do our monthly "checklist" of where he is, but that doesn't seem to fit anymore, as he doesn't have problems with mobility, pain, etc.  So, I'm going to try something different this month...some bullet points about what's gone on in February/early March, as well as a full accounting of sensation.  I think I've missed a few things along the way, and it's also great to reflect on how far he's come in 8 short months.

• He got his new chair back and it's working GREAT.  No more back pain from the rods hitting the top of the chair.  It's also made of carbon fiber, so it makes the chair a lot lighter.  It's much easier for me to get it into the car now.
• J also bought a new pair of wheels, so we have some back up should anything ever happen to his wheels.  It's kinda scary to think of where we'd be if something major happened to his chair (I think this is what's scariest about flying...his wheelchair has to go into the cargo hold...I've seen my stroller after a ride down there and it makes me a little nervous...).
• He should be getting leg braces in the next few weeks (I think this would definitely count as the advancement we're most excited about this month)
• We're making plans....lots of plans.  And they don't all involve SCI, which is pretty awesome.  For a while, it seemed all we talked about and focused on was this injury.  That's not the case anymore.  Here's what we've got lined up so far....
• Today: J's stepfather, Danny, is coming to visit us (by "us" I mean Savannah...we know we're not the reason people come to town!)
• April 13-20: London!
• May-ish: Family trip to San Diego (our first vacation post-Tahoe...time to exorcise the demons of that last family vacation)  If you're familiar with the area, what should we do?  We're driving down-any must-see places on the way there?
• July: I'm going back to Edinburgh for a bit...and Boston too...Dissertation!
• August: I'm returning to "full-time" teaching (in grad school world, that's significantly less than 40 hours, but the dissertation makes up for the rest).  Sav is currently transitioning into full time at school to get ready for this.
• Ongoing: We're making it a family priority to become involved in the SCI world and to give back.  We've been incredibly lucky throughout this, and are very aware that not everyone has the resources and support we do.  We're going to commit to going back to Santa Clara Valley Med at least once a month to take part in their support group activities.  In the next few days, I'll hit y'all up for some help too...we'd like to put together care baskets for all of the folks in the SCI ward (about 20 folks, normally)
• He's still doing 6 hours per week at SCI-FIT.  I don't want to write too much about this yet, since it's not finalized, but we may be traveling out of state at some point this year to pursue some more rehab/therapy options.  
• SENSATION/MOTOR CONTROL:
• Completely normal sensation to a few inches below the nipple line
• "Fuzzy" sensation to around the belly button (he can feel further down on his front, but not so far down on his back...I think that's just due to the surgery)
• Lower Body Sensation:  No "surface sensation," but quite a bit of "deep touch." He can also feel if he's been sitting in one spot for too long (this is really great, because it helps prevent pressure sores, one of the biggest potential complications with SCI).
• Depending on the baclofen in his system (a muscle relaxer that helps reduce spasms), he can flex his calf muscles, feel me massaging his foot, and activate some of the muscles in his glutes/upper thighs.  The less baclofen in him, the more movement he has.  But it's a trade-off...not enough baclofen and his legs can do some crazy things.
• He has some movement in the hip flexors (enough to use the leg braces and swing himself forward)

I'm still amazed at the amount of return he's had, especially given the early prognosis he was given.  I expect he'll get even more back over the next few months.

Than you all for the tremendous amount of love and support that you've given us.  

Love you all,

Ashley

Two!

I’m diverging from my traditional blog subject matter with this post because today is special.  Our little girl is two today.  I’m going to try valiantly to avoid the cliches that come with parenthood, but I will permit myself this: wow, that was fast!  I feel like we just brought her home from the hospital, and now she’s running and climbing and talking.  So, instead of an update on where Jason is in his recovery (that will come in a few more days), here’s an update on Savannah at two.

• She’s incredibly mobile.  I feel like she’s always on the move: running, climbing, jumping, dancing, twirling, stomping.
• Her vocabulary has exploded.  There’s no way I could list all the words she says.  At the moment, she’s especially fond of animal noises (particularly the roars of the tiger and lion!), pointing out her body parts (she thinks her knee is her elbow, but otherwise knows all the “basics”), naming people (she likes to point to mama, Savannah, dada, and pup-pup; she also likes saying the names of the other children in her class), and issuing commands (“Mama sit!”, “Hug me!,” “Rock me,” etc).  She’s also beginning to put small sentences together, and is getting pretty good with “please” and “thank you.”  
• She’s a good sleeper.  She normally takes a nap in the afternoon after lunch (about two hours), and then sleeps from about 8:30pm-7:30am in her toddler bed.
• Eating is hit or miss.  She was a pretty adventurous eater as an infant, but she’s not quite so good anymore.  She has her favorites that she never turns down (yogurt, most fruits, a decent amount of veggies), but she’s a little more wary of new foods.  She tends to eat one big meal per day, and then she likes to snack on things the rest of the day.
• She weighs about 28 pounds, meaning she finally tripled her birth weight.  Her weight gain and growth has been much steadier in her second year than it was in her first.
• She’s in love with her puppy.  She thinks Sonja is her best friend, and constantly tries to give her hugs and kisses.  Sonja is pretty tolerant, especially since Savannah manages to sneak her food every now and again!
• She loves art and music.  We do a lot of coloring and painting in this house!  It’s also rare for a day to pass without music.  She loves her instruments, particularly the drums.
• She’s a great helper and is definitely more tuned in to what people are doing around her.  She noticed that Jason was having a rough day a few weeks ago, and went up to him, gave him a hug, patted his back, and said “it’s okay.”  Too sweet.  She also helps us make Sonja’s dinner most nights.

We feel incredibly lucky to be this sweet girl’s parents.  She is a constant source of light and joy.  As sad as it is to leave behind her babyhood, we’re very excited to see her grow and develop some more.  Happy Birthday, Savannah Grace.

On her birthday; born 12:25pm, 9 lbs, 21 inches

March 2011

March 2012

PT Evaluation and a note about how awesome my brother is

Busy week around the Leyba household...which continues into today.  I'll have to keep this relatively short, because we've got a birthday party to get ready for!  Our little girl will be two on Wednesday and we're celebrating today with some of her friends.  Should be lots of fun.  We're having the party at Gymboree...I'm exceedingly grateful that places like this exist, because, quite honestly, the thought of having 10 two year olds in our house in more than a little terrifying :)

So, back to our week.  Jason went back to Santa Clara Valley Med on Wednesday to get his PT evaluation for KAFOs (Knee-Ankle-Foot Orthotic...aka leg braces).  His doctor signed off on the braces at his last visit, so the point of this appointment was to make sure that he had the strength, flexibility, and movement that the braces would require.  We were a little nervous about this visit, because, as a T4 injury, Jason was not the typical KAFO patient.  Most PTs won't even consider someone for these unless they are a T10 injury or lower.  Thankfully, Karen (J's PT) was willing to let Jason try to hit the necessary goals for the braces.  In order to get approved, he needed to:  be able to do 50 dips, wheel himself a mile in less than 20 minutes, have little to no spasticity in his legs, full range of movement in the hips, and a "+2" movement in his hip flexors (meaning he could move his hips, essentially while lying on his side).  The strength factors were easy enough to meet-he's been working out a lot (he's got ridiculous upper body strength).  Honestly, we were most worried about the hip movement.  He was able to do the +2 movement, but the range of motion and spasticity requirements caused some problems, because his legs were acting up a bit that day.  He's been trying to reduce the meds he's on for spasticity, which had been going pretty well so far.  On Wednesday, though, the legs were NOT cooperative.  Thankfully, Karen took J's word that this was an abnormality and approved him for the KAFOs :)  Now we just have to wait on the paperwork and insurance approval before Jason goes back to get fitted by the orthotics folks.  That'll be another few week wait.

Wednesday was actually a busy, crazy day for us.  We had J's evaluation at the hospital, which came just a few hours after having to essentially be evacuated from our apartment due to a gas spill in the garage (someone tried to siphon gas out of people's cars and spilled gas EVERYWHERE).  It's not fun to wake up to the very strong, and very distinct, smell of gasoline...

Then, my dad called and told my my brother, Bo, had been in Branson, MO when the first of a string of tornados touched down.  Bo was sleeping was awakened by the window and wall behind him being ripped out.  Very soon after that, an air conditioning unit fell on top of him.  This turned out to be a good thing, as it held him down while the tornado sucked everything else out of the room (all his clothes, his phone, his keys, etc).  He was badly cut up from all of this, with the biggest damage being done to his ear.  He was able to crawl out from the a/c unit and, instead of just getting out, he, his boss (he was on a business trip), and another young couple they came across went door-to-door getting people out of the hotel.  At one point, he had to kick a door in to rescue an elderly couple (he did this barefoot and in his boxers...quite the action hero).  Everyone got out and he was eventually taken to the hospital where he was stitched up.  A local news reporter covered the story of the young couple (they were on their honeymoon) and Bo is mentioned in it.  You can find it here: http://www.ky3.com/news/ky3-young-couple-rescued-branson-hotel-guests-during-tornado-20120229,0,3966434.story  He's the Marine they reference, and can be seen in the video at about the one minute mark (he's the one covered in blood).  It goes without saying that I'm extremely happy he's safe and very proud of him.

I hope your weeks were less eventful!

Love you all,

Ashley