A Trial Run at Independence

Jason's mom and brother, who have been here in CA with us since the day after Jason's accident (8 weeks ago on Saturday!), flew back to Virginia last night. There can be no doubt that their presence made this process so much easier. Gail and Nick took care of Savannah and Sonja (our dog who, for those who don't know, is now on Prozac due to the shock of this situation...). This took a lot of pressure off of me, and allowed me to focus my attention on Jason and his recovery. My dad is flying in tomorrow and will be staying through the end of September, Jason's dad and stepmom are taking on October, and then my brother will be here indefinitely. We certainly have a tremendous support system!

But, for the first time since the accident, it was just the 4 of us at home last night. It has been good to see where we are in terms of being independent. We really want to get back to the point where people are coming to stay with us because they just want to see Savannah, not because we need them here in order to function. We're not quite there yet :) We can certainly manage for a few days, but we still need help, particularly in the mornings and evenings. The days aren't too bad at all, since Jason can do pretty much everything for himself. This brace, though, prevents him from being able to get in and out of bed on his own. He also still has 6 broken ribs that are not totally healed...

In brace news, he goes in for the X-ray on Thursday to see if the back is stable enough to take the brace off. The scans have to be mailed to Reno so that his neurosurgeon can approve this, since no neurosurgeon here in the bay area will work with another neurosurgeon's patient on follow-up care (rather annoying actually). Hopefully, he'll get the okay sometime early next week...so, keep your fingers crossed :)

Jason also started outpatient PT yesterday. It was a really great session. He was evaluated and then spent some time on stretches and trouble-shooting some issues he has with spasticity (his leg spasms are crazy at times). Spasticity is normal in SCI patients, though Jason seems to have stronger than normal spasms. At times, his legs seem to want to do what he would like them to. For example, when getting out of bed into his wheelchair, his legs will lift up on their own onto the foot plate. His therapist acted like she hadn't heard of something like that happening before, so I'm guessing that means we should be encouraged? He also got to use the standing frame for about 15-20 minutes. We're hoping to get one of these for the house, since it helps with digestion/circulation/swelling/muscle tone...it's just an all-around good piece of equipment. He has to use it a bit longer in PT before we can begin the process of asking insurance to pay for one.

Many thanks for all of the great suggestions for the sofa. I think we're going to try putting a piece of plywood under the cushion to give it a bit more firmness, as the main problem he's having is that the cushion is too soft to really give him any leverage to get off the sofa. I'll let y'all know how that works out.

Since we got so many great suggestions for that problem, I'll run another one by y'all. We've put down bamboo chair mats over our carpet, in order to make it easy for Jason to wheel around the house. They are very helpful, but we're having a hard time keeping them from moving all around due to wheelchair and foot traffic. We've tried taping them together and using the grip material you put under rugs, but haven't really had any luck. Any suggestions?

Love you all,

Ashley

Who's tired and cranky and (soon to be) red all over?

Savannah! After a long visit to the doctor today, we learned that Savannah has roseola-a virus that is apparently making the rounds amongst the under 5s here in Northern California. Thankfully, once the fever breaks in the next day or two, she should be back to her normal self. This will be a welcome change, as she has been nothing short of a terror the last 2-3 days. It's also good to know her bad temperament is due to her being ill and not (as I feared) an early bout of the terrible twos. The pediatrician said she contemplated selling her children when they had roseola-it's like teething on steroids in terms of how she's behaving. The only moment of real peace we had earlier today was when she snuggled up with Jason in our room. Even that was short-lived: it ended with her dumping chocolate protein shake all over the quilt on our bed!

In other news, Jason began outpatient occupational therapy yesterday. It was the first visit, so the whole time was spent discussing goals and what Jason could hope to work on in OT. It seems the main purpose is to trouble-shoot and problem solve any difficulties that arise at home. So, the first goal is to work on getting off the couch! We contemplated putting risers under the sofa, but decided against it since Savannah is definitely in an exploratory phase and I can see her knocking the risers out or hurting herself in some other way (she's quite creative in the ways she can demolish things and/or injure herself).

We also went by the wheelchair vendor to finalize the order for Jason's permanent chair. It'll definitely be nice to get rid of the loaner-it's very bulky. If we're traveling in our car, only Jason, Savannah, and I can be in the car. The chair takes up the trunk and the two passenger seats in the back. The one Jason is ordering is MUCH more compact, so all of it should fit in our car's trunk. We're looking at buying a new car sometime next spring. Jason is already beginning research into the best options. We don't want to do too much right now, though, since we don't really know what the extent of his injury is just yet. We're both committed, however, to doing all that is necessary to avoid purchasing a minivan :)

On the new sensation front, Jason can feel some tingling in his bottom if he sits in one position for too long. This is great, because, at the very least it means he'll be reminded to move around and will avoid pressure sores. Hopefully, it means maybe he'll get more sensation below the waist? He can also feel when his ankles swell, which tends to happen towards the end of the day since his circulation is impacted by sitting in the wheelchair most of the day. Again, any feeling is good, even if it doesn't ultimately mean regaining full sensation. We're cautiously optimistic, though.

We're trying to focus on the silver lining with this injury, and for sure one of the positives about this whole experience is the way our family and friends have rallied around us. It's been great to hear from everyone, both old and new. Thank you :)

All my love,

Ashley

A Quick Update

Sorry that it has been a few days since my last post. I'm home more often now than I was when Jason was in the hospital, but I find that I have much less time to spend on the computer. I'm quite busy trying to keep up with all of Jason's medical info (calling doctors, setting up appointments, etc, etc). Jason just bought me a new laptop (MacBook Air...it's amazing!), though, so I should be able to update more at night.

We've been getting out and about as much as possible over the last several days. On Monday, Jason and I took Savannah to her first day of school in the toddler room. We were worried that she would be a little nervous being in a new room, but, after a moment or two of hesitation, she blew us kisses and said "bye bye." 2 out of 3 of her teachers from last year have moved up with her, which has made the transition a lot easier for her. After that, we went to Ikea to look into storage ideas for the kitchen. Right now, Jason can't access our plates/glasses, so I'm trying to find something to put in one of the lower cabinets that will allow him to do so. Unfortunately, the cabinets are odd shapes and have shelving in them that can not be removed. Jason liked Ikea-nice, smooth floors that were easy to move around on! After Ikea, we headed over to Google for lunch with some of the members from Jason's team. I think it really was good for him to see everyone and have a chance to talk shop, so to speak. I couldn't keep up with much of the conversation (I do try to understand what all he does at work, but much of it is beyond my understanding), but I could tell Jason was really enjoying himself. He's gotten back into programming the last few days. After 5 weeks of virtually no computer access, he's gone back to the computer with a vengeance. :)

Today, we had a lazy morning. Gail took Savannah to school and Jason and I slept in. I had some errands to run this morning, so Jason hung out with his brother, Nick, and played Starcraft (another thing he missed while in the hospital). Afterwards, we walked over to our chiropractor's office (my appointment, not his). Walking/wheeling over took a lot out of Jason, especially as it was very hot (by bay area standards) today. So, he got his exercise in, which is good.

Tomorrow is a big day. Savannah has swim lessons. I'm hoping Jason will come along for that. And we're planning on heading to San Jose so that Jason can use the adaptive gym in one of the community centers there.

Keep all of the prayers and good thoughts coming. As we're learning, we've only just begun the recovery process.

Much love,

Ashley

Adjusting

Today is a week since Jason left the hospital. For the most part, things have been going pretty smoothly. We're definitely still trying to figure out how to do some things (the couch remains a difficulty...), but every day is getting a little easier.

We've been very lucky in having a lot of help with this transition. Jason's mom, stepdad, and brother have been here since the accident (Danny has been in and out) and I can honestly say that this would have been an impossible situation without their help. Savannah's daycare has also been a huge help. Normally, she only goes to school on Monday and Tuesday, but, while Jason was in rehab, she was bumped up to full time, so that I could be with Jason in the hospital. Additionally, different families and teachers at the school have provided us with dinner (every night for 2.5 weeks!). They're also making the school wheelchair accessible for Jason, adding books to the classrooms that feature parents in wheelchairs, and they also now have a doll in Savannah's classroom that is in a wheelchair. To say they've gone above and beyond is an understatement. Throughout these last six weeks, we've been overwhelmed by the love and support of our families and friends: the prayers, cards, visits, food, and the offers of help have been so wonderful and instrumental in Jason's recovery process. I hope everyone knows how genuinely appreciative we are.

Jason was suppose to start outpatient rehab this week, but apparently Valley Med is a bit full at the moment. So, he'll start OT on Thursday and PT the following Monday. To compensate, we're going to do 3 days at an adaptive gym in San Jose (the Ohlone class doesn't begin until 8/30). Last week was his "vacation." Now it's time to get re-focused on therapy and regaining his strength :)

He's begun walking Sonja at night...here's a photo of him walking Savannah as well. This is one of the things he was worried about not being able to do anymore, but where there's a will, there's a way, right?

I asked Jason if he wanted me to add anything on here for him. He said just to tell everyone that he is "feeling good and doing well."

Love you all,

Ashley

A little optimism goes a long way...

Jason has been home for four days now and things seem to be getting a little easier. At the very least, we're getting into a routine and are learning how to do some activities faster and/or more efficiently. Like going places in the car....on the way home form the hospital, it must have taken me 10 minutes to break down his wheelchair and get it in the car. I can do it in just 3-5 minutes now (and am getting quite the workout by doing so!).

Jason visited his primary care doctor today. After catching her up on all that has been going on...which took a long time in and of itself, she told us that she felt Jason would walk again. It was nice to talk to a doctor who is so optimistic. Of course, we also feel Jason will walk again someday, but the neurosurgeons and physical therapists thus far have been rather tight-lipped. They won't really say much one way or the other, beyond cautioning us that if Jason does walk, more likely than not, he won't be riding bikes again. Though this last bit wasn't much of an issue. Jason and I have already discussed the end of his going 45 mph down a hill in a bike days...

There's not too much more to update on. We're trying to find normalcy again in our daily lives, especially in this week long break from therapy that Jason has. I imagine we will be VERY busy again next week when outpatient therapy begins....

Settling In

Hello everyone!

Sorry that it has taken me so long to update you all on the move back home. Jason did leave bright and early (by hospital standards) on Saturday morning. The first day and night home were a little rough, to be honest. We've gotten use to the hospital and how things are done there, so it is taking us some time to figure out how everything is going to work at home. For example, Jason enjoyed watching some TV on the couch Saturday afternoon. It was super easy for him to get on the couch, but getting off of it (the couch is a couple inches lower than his wheelchair) was not an easy proposition at all. It took me standing on the couch behind him, lifting him up, while he pulled himself forward to be able to get him back in his chair. Thankfully, that has gotten a little bit easier since the first time, but it just goes to show you that we're going to have to learn to do things a bit differently now.

Yesterday, some friends came by to help us set up our bedroom. We've rearranged the furniture to make it easier for Jason to get around, plus we bought a new bed that had to be put together. It looks really great now. All that's missing is some artwork/pictures on the wall and a new TV (Jason is currently researching that purchase).

Last night went MUCH better than Saturday night. Jason got a shower. In the hospital, he only got a real shower once a week.....and that was only after the staples in his head/back came out 2+ weeks after his accident (when he got that first shower, they were washing off bits of dirt and road debris from his biking event...). We did sponge baths every morning, but those are only mildly effective. So, he really enjoyed getting a "real" shower last night. The only downside of showering now is that he must wear the brace in the shower....which means the brace gets wet, which means he's stuck in bed afterwards until the brace dries. Life will be much better when that brace goes away....

Today has felt somewhat normal. We sat in bed, drinking coffee (Well, I drank coffee. Jason had a super healthy fruit smoothie) and reading the news. Savannah would run in every now and again to give hugs and kisses. It was really lovely. Later today, I'll begin making phone calls to get outpatient rehab set up, as well as his gym classes at the local junior college. But, for now, it's nice to just sit and relax together. There hasn't been much of that over the last five weeks, so we're really enjoying it now.

Here are a few pictures from the last two days in rehab and the first day at home....

Love it :)

Ready to go!!

Sweet Daddy-Daughter Moment

Back on the Bike!

Wheelies!

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