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

SCI-FIT!

Jason went for his evaluation and first workout at SCI-FIT today (for those who are interested, check out their website to see what they’re all about: http://www.sci-fit.org/).  It went really well.  It’s so wonderful to be at a place that’s all about optimism and results.  Their motto is “no limitations, just possibilities.”  That’s a far cry from what you encounter in traditional rehab and PT places (Not to knock the folks at those places, as they have been tremendously helpful over the last 9 weeks).  We spent about 30 minutes talking with the founder and the head trainer.  The founder has a really inspirational story:  he was injured while on vacation in Hawaii about 6 years ago.  His neck was broken at the C6 level and he was told that he’d never walk again.  After moving to Southern California to take part in an intensive exercise therapy program, he regained a lot of sensory and motor control.  Due to his successes, he decided to open a similar facility in Northern California, complete with staffing it with some of the leading therapists in the field.  When we met him today, he was walking.  Amazing.

After the initial meet and greet, Jason was put to work.  They stretched out his legs, encouraging him to try to communicate with his legs and lower extremities. Then, with the use of a harness, he was put on the treadmill where they walked his legs.  The goal with this is that, through LOTS of repetition, you can re-route the nerves in the legs and make them function again.  Then he did “sit and stands” where he pulled himself to a standing position from a chair (video at the bottom!).  I got side-tracked at this point to talk to the founder’s wife, so I didn’t see the entirety of the session, but Jason said he also did sit ups, some work on one of the weight machines, and a few other activities.  He’s VERY sore already :)  Our goal is that he’ll go to SCI-FIT twice a week, for 2 hours each time, plus, if time permits, some time on the FES bike (this piece of equipment is supposed to be SUPER effective and helpful).  Once he starts back to work, we’ll have to be creative with our scheduling, but I’m sure we’ll be able to make it work.

The folks at SCI-FIT were amazed that Jason was only 2 months out from his injury.  Annabelle, one of the founders, remarked that he didn’t look like someone who spent such a long period in the hospital (I told her this was because we didn’t let him eat the hospital food!).  She also thought he was a lot lower injury than he was due to his great balance, muscle tone, and general abilities.  I know he’s doing great, but it’s always good to hear the same thing from the “pros.”

In other news, the spasms seem to be a bit more under control of late.  He hasn’t been kicking out at random things (like me) for a while, for which I am eternally grateful :)  Not sure what he’s doing differently that has led to this, but we’ll take it.  

I realized, after making the last post, that I forgot to include an update about what sensation Jason has at this point.  So, here goes:  he has totally normal sensation (and motor function) to the nipple line.  He has spotty sensation from nipple to belly button.  He has motor control to about the mid-abdomen, though maybe more is coming back?  He can feel when his legs swell, as well as when he’s been sitting in one spot for too long.  He’s beginning to feel some other things here and there, but nothing to report officially just yet.  We’ll let you know when we’re more sure of the developments.

For those who are interested in learning a bit more about spinal cord injuries, check out the Christopher Reeve Foundation (christopherreeve.org). It's one of the best SCI foundations out there and is leading the way in spinal cord research. Even if Jason doesn't naturally regain use of his legs, we're confident that science will provide a cure in the very near future, thanks to the great work of the folks associated with this (and other) foundations.

We hope you are all planning on a wonderful weekend. We're planning on visiting the farmer's market and I am going to clean out our storage room (again...it's amazing how fast it got crowded with stuff post-accident)!

Love you all,

Ashley

One Month at Home!

So today marks one month since Jason left the hospital, and what a month it has been!  I thought it might be good (for our records and to satisfy anyone’s curiosity) to document what strides he’s made in the last month.   

Mobility:  When he came home, he could do basic transfers to/from his wheelchair with the transfer board.  In the last month, he’s gotten better with the transfers.  He’s now lifting to move from place to place, as opposed to sliding himself up and down the transfer board (definitely developing some strong arms!). For the most part, he doesn’t even need anyone around to spot him anymore on the basic transfers (to/from the bed being the biggest one).  He can get in and out of the shower without the transfer board.  

Pain:  Most days, pain is not really a problem.  He’s weaning off the final dose of oxycontin that he’s on and switching entirely to ibuprofen (and, eventually, off of that altogether as well).  When he does hurt, it’s usually his ribs that bother him.  He probably still has another month or two of rib pain left.

Exercise and Therapy:  He does a lot of exercises at home with various devices we’ve rigged up around the house.  He also does “community re-integration” activities every day.  Basically, this is just him getting out and about in the wheelchair-either to restaurants, grocery stores, Target, Savannah’s daycare, etc, etc.  He also goes out with the family most nights on walks with Sonja (not so much the last few nights due to overdoing it this past weekend).  He’s gotten to where he can wheel himself for about 1.5-2 miles over some pretty uneven terrain.  To put this in perspective, when he started rehab, he could barely wheel himself 1/10th of a mile over super flat hospital floors.  His physical and occupational therapies are going well.  He does OT every other week, and, right now, goes to PT twice a week.  Now that the brace is off, he will begin a harder exercise therapy regimen at a specialty gym.

Daily Life Activities:  He’s pretty independent.  He can: dress himself, shower himself, do all basic toiletry processes, work on the laptop (this happens a lot these days!), put dishes away in the dishwasher, feed Savannah, lift Savannah into his lap, and get in and out of bed.  There are probably many things I’m missing.

I hover more than I should, but I try really hard to only help him when he asks for it.  This has led to some interesting experiences out and about.  There have been a few people who have given me dirty looks because I let him open the door for me when we go to stores :)  

Biggest Problem Area: SPASMS!!

Biggest Success: Getting the brace off :)

In the next month, we hope to.....  transition him back into work (he’ll be officially working from home starting October 3...though he’s been working on some pet projects for the last 2-3 weeks), begin exercise therapy in Pleasanton, and work more on his ability to interact and play with Savannah.

We hope you are all doing well. Thanks for the cards, calls, thoughts, and prayers.

Love you all,

Ashley

What we do all day :)

The brace is off!  The doctor called on Wednesday, and before I could finish saying "the doctor said you can take the brace off, " Jason had it off.  He was a little excited about it all.  The only unexpected impact of removing the brace has been an increase in rib pain.  Apparently the brace was keeping the ribs stabilized and reducing the pain.  Jason hasn't complained too much about it, though.

So, here are some pictures of what a normal-ish day looks like for us.  

Jason begins by stretching his legs in bed.

Uses the iPhone to keep track of time.  Holding each stretch for 2 minutes seems to be his "sweet spot."  The spasms are much better when he does 2 minutes in each hold.

Exercising.  Stretching out the shoulders, which are doing a lot of work these days.

Quick trip to Target to get a few household necessities.

Post-dinner snuggle time.

This one is out of order, but we took Savannah to get her hair cut today...she was great.  Mama only cried a little bit.

Today was a really good day.  Jason, Savannah, and I went to her school this morning for a beginning of the year breakfast.  We wanted to arrive around 8am, so that meant we needed to be able to walk out the door at 7:30 (super early for us, even before the accident).  I got up at 6, thinking that would give me time to get ready and enjoy some coffee before Savannah woke up (she normally sleeps til 7:30).  She woke up at 6:15, just as I was settling into my coffee.  Sigh.  There's a lot to do in the morning before leaving-stretching, changing clothes, meds (today was the last day of the blood thinner injections! Woohoo!).  We enlisted my dad to help get Savannah dressed once it became apparent that I was not going to be able to get us all ready in time to leave.  So, instead of 7:30, we got out at around 7:45.  Not too bad, actually.

The breakfast was lovely.  Jason really enjoyed getting to see all of the other Googlers and parents.  He's been to one daycare drop off since coming home, but this was the first time he really got to talk to all the other parents.  The folks at Sav's school have been so good to us (I know I've posted this before).  We're very lucky to have such a great community of support.

After breakfast, we took Savannah for her first haircut.  She was a champ.  I cried.  The salon owner kept reassuring me it grew back, but it was hard to explain to her that I wasn't lamenting her losing some hair, but was more upset that we had gotten to this milestone.  After her haircut, she looked like such a little girl, and not like my baby.  I suppose we have to let her grow up at some point.

We have a nice weekend planned.  I'm going to try to convince Dad and Jason to go the Apple festival at Garin park tomorrow and, on Sunday, some friends are coming over to dye play silks (and Savannah will have a playdate with her buddy, Walter).  

I hope you all have a lovely weekend.

Lots of love,

Ashley

Developing a New Routine

So, still no word on the brace.  Apparently, Jason's doctor worked over the long weekend, so he had today off.  His assistant assured us, though, that we will know something tomorrow.  Thank goodness!

Over the last few days, Jason and I have been talking about trying to really establish a daily routine.  We have a rather informal routine going now, but we need something more thought out and consistent, especially since Jason will begin working from home at the beginning of October.  Right now, it varies widely as to when Jason gets out of bed and going for the day.  Mainly because so much has to happen in bed before he can get out of it.  He needs to stretch his legs (to help with the spasms), give himself his blood thinner injection, eat breakfast, take meds (more vitamins and supplements than real "meds" these days), and get dressed.  I'm trying to let Jason do as much of this on his own as possible.  So, in addition to establishing a routine, we've got to get faster with everything.  If he gets up earlier, we can also move breakfast to an "after-getting up" activity.  Oh, and once all our family heads back to the east coast, we're going to have to do this while also getting Savannah up and ready, Sonja out for a morning walk, and, I suppose I'll need to get a shower and/or dressed somewhere in there too :)  Lots to figure out!

On another note, part of me was tempted to label this post, "some days suck," because, really, some days just do.  More often than not, I think we're doing a really good job adjusting to this tremendous change.  If one of us is having a rough day, the other is there to bring their spirits up.  We're a great team in that regard.  But, occasionally, you get days that go all wrong.  Yesterday, for example.  On Sunday, Jason had a really great day with spasms and pain and general independence.  We were both really excited and thought everything boded well for going forward.  But, as they say...one step forward, two steps back.  Yesterday, Jason's spasms were TERRIBLE.  He couldn't move his legs, so he needed help for everything: getting in and out of bed, getting in and out the shower, putting on shoes, putting on clothes, etc etc.  It really sapped my strength and made him feel a bit defeated.  So, yeah, I don't know that there is a more elegant way to say it, but some days suck.  On those days, we try to think of those who support us, and read over the cards and letters that have been sent our way in the last 8 weeks.  That helps, but I think the reality of all this is that there will be bad days.  On the whole, though, most days are quite good, all things considered.  For those of you who think it might be too late to send cards or letters of encouragement, please reconsider.  Any encouraging word helps, especially now and especially on those bad days.

Love to you all,

Ashley

P.S.  I realize I've been terrible with pictures of late, so I'll remedy that soon.  I'm thinking of writing a "day in the life" type post soon....once we get a routine down, that is :)

Sorry to keep you in suspense, but....

We haven't heard anything from the neurosurgeon about Jason's brace just yet. I paid extra to overnight the scans to Reno, and they arrived in the doctor's office at around 10am. Unfortunately, Jason's doctor got called away to an emergency surgery at 9:45am....brain and back surgeries aren't known for being short, so the doctor didn't make it back to the office on Friday. Jason was a little bummed about not hearing anything, but it's hard to be too upset because, on July 9, Jason was that emergency surgery the doctor had to rush out to perform. The doctor's assistant assured me that Jason's scans were the first item in Dr. Leppla's inbox, so we're hoping to hear something first thing tomorrow.

We've been having very lazy days around the house of late. Jason has been busy working on a project that he did not have much time for while officially at work. I find it more than a little entertaining that he is using his medical leave to work :)

We remain optimistic about Jason's sensation returning. This morning, he was giving himself a shot (a blood thinner he's been on for a couple of weeks now. He has to continue taking it for another 5 days). As he was injecting himself, he grimaced a bit...which is odd, because he gives himself the injection well below the level at which he can feel things. Jason often jokes that one of the benefits of paralysis is that you can get shots and injections without any pain (he got a flu shot in his leg this week...). I asked him if he felt the shot and he replied, "well, I felt something." I thought this was great, but Jason assured me that he would have rather regained the sensation in the lower belly in 5 days, after he's done with these daily shots :)

I hope you are all enjoying the Labor Day holiday. Keep us in your thoughts and prayers...and keep on hoping for the official word on the brace to come tomorrow!

Love you all,

Ashley

X-Rays!

Jason went in to get his x-ray done today to see if he can get the brace off. I overnighted the scans to his neurosurgeon in Reno, so, hopefully, we'll find out tomorrow whether he can take it off. During the x-ray, he had to take the brace off and get images of him moving the back around. I HATED this part! Jason was fine with it all-said it didn't hurt or bother him, but it made me so nervous that he might injure himself by moving around. After all, he's spent the last 8 weeks keeping his back essentially immobile. I eventually had to stand behind him in the x-ray room, because I was starting to make him nervous with all my hand-wringing and nervousness :)

My dad arrived safely from SC yesterday, and he has been put to work already! He and Savannah have had lots of time to bond, due to Jason and me being out most of the day with the x-rays and other errands. We're very happy to have him here with us :)

So, everyone keep your fingers crossed-I'll let you know tomorrow what the verdict is regarding the brace!