Good News

We just got some really good news. Jason's injury is no longer classified as neurologically complete (Asia A in neuro speak). Due to all the sensation he has regained below the level of injury, he is now considered an incomplete injury. This may seem a bit small, or an issue of semantics, but the change is quite important, especially when thinking about his long term prognosis. Generally speaking, people with incomplete injuries regain a lot more in terms of sensory and motor skills. He's also starting to feel A LOT of tingling in his legs. This could be nothing....or it could be a sign that his legs are coming back on board. :)

His last few days have been really great. He's gone swimming and, despite my initial misgivings (I mean, let's remember how he got here...), he rode a bike again yesterday. There was a big part of me that didn't want him to ever get on a bike again, but seeing how happy he was has made me reconsider. Maybe we'll look into local hand-bike clubs in another few weeks...

So, tomorrow is the big day: Jason is coming home! It's kind of fitting that he come home tomorrow, exactly 5 weeks after his accident. The house is more or less ready. Some of our friends are coming over on Sunday to help with the finishing touches. Jason is super excited about leaving-I think I'm going to have trouble preventing him from bolting as soon as he gets up tomorrow morning! We've begun saying our goodbyes to the wonderful folks at Valley Med who have helped us through the last 4 weeks. It was not always an easy process, but they have been by our side the whole time, educating and encouraging us. There is no way to repay them for all they have done.

For those who would like to visit, Jason's schedule will be fairly open next week, since he won't begin outpatient rehab for another week. Let me know if you want to drop by and we can arrange something.

Love you all,

Ashley

4 more days...

Jason ordered his permanent wheelchair last week and today, at long last, he received the loaner chair he'll be using until the new one comes in (it can take up to two months!). Until now, he's had to use one provided by the hospital-it's a fine chair, but it is very heavy and a bit on the small side for Jason. He's very excited to be in something more lightweight and properly fitted :) I'll have to post some pictures of it later.

We're now counting down the days until he comes home: only four days left in the hospital! We know that the transition out of the security of the hospital will be difficult, but we're looking forward to trying to regain some normalcy in our lives. We've both missed the simply moments of life that the hospital takes away-hanging out on the couch, watching Savannah chase Sonja around, going out to dinner, taking walks around the lake as a family. We may have to do some of these things differently now, but that's okay. We're confident we'll figure it all out. We've got a great support system here, so we know that whatever difficulties we encounter, we'll have a lot of people on our side, helping us through.

I'm including in this post a picture that I took of Jason and Savannah about two days before Jason's accident. It was one of our last outings as a family before Death Ride. We took Sav to Lake Tahoe and this shows Jason holding her hand, walking down to the shore. I get teary-eyed looking at it, because so much has changed since then. We are still grateful and thankful for all that has gone Jason's way since this all began, but, at the same time, it's hard to forget that our lives have been upended in the last month. Each day, we are very aware that it is up to us to choose happiness and gratitude, as opposed to despair and being miserable. This picture represents the end goal of all this-to be able to do something as simple as walking with our little girl at the lake shore.

Love you all,

Ashley

Woohoo!

He's coming home on Saturday!!

Ready to go Home

Over the last few days, Jason has gotten a lot stronger (he did 30 dips in the gym yesterday!). This is, of course, a great change. The only not-so-great part of this is that it has made him EXTREMELY anxious to get out of the hospital (I guess this is good depending on how you look at it?). I've passed all the tests required of me for him to get out and he is at the point where he feels like being shut up in a hospital room/bed 12 hours a day is not the most conducive thing for his overall well being. He loves PT/OT/Gym time, but the rest of the day can be a bit boring.

Currently, his discharge date is Tuesday, August 16. He's trying to get it switched to August 13. His doctor is very happy with his progress and seems to think going home on the 13th would be fine. The only problem is is that this somewhat violates hospital protocol. As we've learned over the last three weeks, this place is big on following protocol. They like to give patients a day pass on the Sunday before release to go home and make sure everything is ready. This way, if there are any major problems, they can be corrected before discharge on Tuesday. While I can understand the usefulness of such a policy, I feel that we have enough support and people around to be able to make any changes very quickly. Our house was, more or less, wheelchair accessible before Jason's injury, so there's not too much to be done, other than re-organizing some things and moving furniture around. Now we've gone a bit above what Jason's OT suggested we do in the house: we've bought a new mattress and bed that will be easier for Jason to get in and out of, we're planning on re-arranging one of the cabinets in the kitchen so that Jason can access plates/bowls/etc, and we're making some changes to the computer nook, so that he can work/play on the computer as soon as he gets home. All of this will be done this week, though. And even if some of it isn't done the moment Jason gets home, we'll still be alright. So, keep your fingers crossed that the hospital caves on an earlier discharge :)

In other news, we got to go on a nice outing to the movies yesterday. Jason and about 5 other patients (and some spouses) went to see "Crazy Stupid Love." It was a fun movie and a really enjoyable time for us all. It was really nice to be out of the hospital and doing something normal together. We're looking forward to more date time when he gets out.

AND, as you can see in one of the pictures I'm posting, Jason's neck brace is gone! He got the approval yesterday to take it off. Now, he just has another 4-6 weeks in the TLSO (Thoracic Lumbar Support Orthotic) and then he will be brace-free, something he is eagerly looking forward to.

Ok, a final AND here :) I've been asked (and Jason too) about what sensation Jason has/has not recovered post-ride, so I thought I'd update everyone on that situation. After his accident, Jason could not feel anything below his nipple line (classic T4 spinal cord injury). During the week in Reno, he began to feel some things down to his waist line, though this is spotty (i.e. he can feel pressure and harder movements/touches, but not all light touches or pricks, which is what they test when they do sensory exams). As such, he is classified as a neurologically "complete" injury at the moment since he does not have perfect sensation below the level of injury. This, most likely, will change as the swelling in the cord goes down. His surgery involved about 15 inches of the spinal cord/column, so there is A LOT of swelling going on. The neurosurgeons indicated it could take 6 months or more for all of the swelling to go down. His injury is not complete though in the sense that the spinal cord was not severed. I've learned that you have to be very specific when talking about complete vs. incomplete as doctors all define it in different ways. Since arriving at Santa Clara, Jason has started to feel some things, again inconsistently, below the waist. He can feel hot and cold in his legs and feet (more his feet than legs). This started in Reno, but has gotten a bit stronger of late. He can also feel some tingling in his feet and legs. Additionally, he's begun having leg spasms. I can now touch his leg or foot and it will spasm in response. This is a really encouraging sign, as it means that something in the nerves is working there. Right now, we're trying not to focus so much on what he can or can't feel. Instead, we're working on getting strong enough to get out of the hospital. From what we've heard, most of the gains with sensation will happen in outpatient rehab and with the SCI FIT gym he's planning on utilizing.

Thank you all for your continued love and support!

Working out!

No neck brace..also about 15 pounds lighter :)

For comparison, this is Jason in the ICU. He's looking much stronger now!

Short Term vs. Long Term

Over the past few days, Jason and I have been talking a lot about our short term and long term goals. One of the frustrations of rehab is that it is a narrowly and exclusively short term place. There is almost no discussion of where Jason will be one year from now. Instead, the doctors and therapists have a very clear goal: get Jason as independent as possible so that he can go home. We support this goal entirely, but it would be nice to talk a bit more about the bigger picture with his team. To compensate for this, we've begun doing some research and planning of our own in order to prepare for the long term. Once Jason gets out of the hospital, he'll begin outpatient rehab 2 times per week. In addition to this, he's going to regularly go to the gym so that he can keep up with the weight training he's been doing at rehab. We know of a place in San Jose that has an adaptive gym, but we've heard that Ohlone College, which is VERY close to our house also has a program.

After Jason gets his brace off (in another 6 weeks or so), he's hoping to begin an intensive, integrated fitness program in Pleasanton at a place called SCI FIT. We've researched this place and it really seems like the best place for Jason to be in this next phase of recovery. Their focus is on getting people walking and moving again and they believe that "movement breeds movement." This philosophy makes sense to me-I don't think Jason will recover his ability to walk if he's in his wheelchair all the time. SCI FIT has the apparati necessary to get Jason on a bike and treadmill. He'll also be doing other load-bearing activities. We're really hopeful about this place. It's not cheap, but from the research I've done, this seems to be the type of program most neurosurgeons are recommending.

Beyond his physical health, Jason has also been setting goals for work. He really wants to return to Google in some capacity (most likely this will mean working from home for a while) by the beginning of October. If he keeps progressing as fast as he has been over the last 4 weeks, I think this goal will be possible.

The last few days in therapy have been great. He's doing all sorts of new exercises in PT and OT and has really impressed his therapists with his progress. In fact, his doctor told him today that, so long as his therapists give the okay, he can leave on August 13, instead of August 16 as he was originally told. So, keep your fingers crossed :)

Thanks for all of the cards and care packages. They really help lift his spirits!

Our Rehab Family

Over the last two weeks, we've met a lot of great people in the rehab center: doctors, therapists, staff. More importantly, though, we've met other families who are going through the same thing we are. I really do believe that the friends we have made here (and we really have become like a little family) have helped make this process a lot easier. It's good to have someone to talk to who really understands the issues and problems you're encountering, whether it's a question of insurance, treatment, or what they're doing to make their home accessible. As eager as Jason is to get out of the hospital, I know that we will both miss this aspect of the rehab center (and Savannah will definitely miss being the only baby around...that child gets SO much attention!).

In other news, Jason continues to inspire and impress me with his recovery. Yesterday, he was able to get in and out of our car on his own, get in and out of the shower, AND he began doing dips in gym, which are reallllly hard. He did 11! I can't even do 1.... His strength is definitely coming back (for example, he could bench press 30 pounds on his first day, now he's up to 90!). I get asked a lot about how Jason is doing emotionally. While there are certainly moments of frustration, or times when he (or we) feel overwhelmed, he is, on the whole, handling this with a grace that I don't think most people would be able to find in a similar situation. He still has his sense of humor, and we've found trying to laugh about whatever awkward situation we're in to be of great help. I have loved Jason for 11 years, but watching him go through the last 3.5 weeks has made that deepen in ways I could not have expected. He's amazing.

And now I'll stop all the gushiness :) Jason is still on target for being released on August 16 (woohoo!). I've ordered everything we need for the house, but will probably need some help disassembling old furniture and moving some things around. So, Bay area folks, let me know if you've got some free time the weekend of the 12th :) I could use your help!

A Few Photos

Here are a few photos I've taken over the past couple of days. More to come...

Savannah with her Daddy

Working on the Hand Bike

Physical Therapy