A Quick Update

Not too much to talk about this week, but a lot of things in the works, so we may have some bigger news in the next few weeks.

This week we took family photos, something we have done around this time every year since Savannah was born (she'll be 2 in less than 2 weeks!).  Jason and I were both a little nervous about how the photos would work not that J is in the wheelchair, but everything was surprisingly easy.  He's gotten so strong that getting on the floor/ground from his wheelchair (And getting back in it...the real tricky part) has gotten so much easier.  Sav ran around like crazy, giving the photographer a run for his money, but we're both beyond happy with how the photos turned out.  If you haven't see them yet, check them out at http://www.jamesthomaslong.com/blog/2012/02/24/fremont-san-francisco-bay-area-family-childrens-photographer-session-in-the-park/  This is just a few of them.  We saw the rest this morning and they're just as amazing.  I'll try to post a few more when we get the digital images.

We've also (finally) made a decision regarding a car....we're keeping our current one!  Kinda boring, I know, but we decided that it made the most sense.  Jason is comfortable with the height of the Acura and we can fix the few problems I had with it (mainly the space issue...we're going to install roof racks, so we have more space whenever we travel).  Both of us were excited about the prospect of having a new car, but I think, at this point in his recovery process, it's better to stick with something that we know works for us.  We'll have hand controls installed in the near future, and Jason will be on his way back to driving.

I've begun booking our trip to London for April (work conference for J and, ideally, some dissertation work for me).  The hotel that we've stayed at on past trips has wheelchair accessible rooms (no ADA in London, so lots of emails exchanged between me and the hotel determining exactly what they meant by "wheelchair accessible"), and it's in a good location.  I'm doing as much work ahead of time determining which places are and are not accessible, so that we're not too surprised when we get there.  I know we can't plan for everything, but I certainly do try :)

Hope you are all doing well, and enjoying the early days of spring (here in CA, at least!).

Love you all,

Ashley

What a week...

I'm glad this week is over.  I've always kinda known that things would be tough around here if I got sick, and this week proved that to be (somewhat) true.  But....let's start at the beginning.

On Sunday night, Savannah didn't sleep well and, when she woke up on Monday morning, had a slight fever and was quite lethargic.  Jason and I decided to keep her home from school to let her rest and recuperate.  After a rough morning that consisted primarily of sleeping and snuggling (not such a bad day, in this momma's eyes), she began to start acting like she felt better in the afternoon.  That was a good thing, because we had a scheduled appointment with Jason's wheelchair vendor that afternoon in order to get his new seat back attached to the chair.  So far, that seems to be working out REALLY well, and he's not had the back pain that he'd been having with the old back.

Tuesday and Wednesday were normal days and I was beginning to think that, for the first time since she was born, I'd managed to escape catching one of Savannah's colds/illnesses.  I was proven wrong on Thursday.   I should mention that Savannah's favorite way to snuggle is to wrap her little arm's around my neck, press her nose to my nose and fall asleep.  This is incredibly sweet, but also is an incredibly efficient and effective means of transmitting germs. So, I woke up sick on Thursday.  Thankfully, this is the day that Jason works from home, so I wasn't totally overwhelmed by a very healthy child (that's really not fair how that works?).  And, even better for us, we have a great friend who drove Jason to and from his SCI-FIT session that afternoon, thus sparing me that task.

Sav was sick for about 12 hours...somehow that has translated into me being sick for 3 days.  I'm mostly feeling better today, but still don't have quite the amount of energy that is required to keep up with a nearly-two year old.  Yesterday was pretty rough around here since Jason went back in to the office, and Savannah was home and kind of going stir crazy after being in the house for 2 days.   Apparently, art projects (i.e. me giving her markers and paper, saying "go color, please") and movies with mom aren't exciting after a while, especially when said mom had promised you a trip to the botanical gardens.  Again, good friends stepped in to bring in chicken soup, which definitely made life a bit easier.  I haven't exactly been in the mood to cook :)

Our dog, Sonja, has probably had it the worst, since she's not been getting the long walks that she's accustomed to....and has begun showing her displeasure in various fun ways around the house.  Hopefully, she'll forgive me soon.

This week hasn't been all bad, though. As I mentioned, J got his wheelchair seat (finally) fixed.  His first PT appointment to deal with leg braces was also set for February 29, which is a lot sooner than we thought they'd be able to get him in.  Monday was also Jason and I's 12th anniversary (of dating)-Jason seems to prefer to celebrate that day as opposed to Valentine's day, it being a "hallmark holiday created for people to spend money" etc etc etc...It was a lovely day.  We've been lucky to have the past 12 years together, and are looking forward to all that the next 12 will bring us :)

Hope your week was full of love,

Ashley  

Expectations of SCI Recovery in the Media (and how we came to realize that walking is over-rated)

For the past few weeks, I’ve been watching “Downton Abbey” on PBS.  For those of you unfamiliar with the series, it follows the lives of all those (both above and below stairs) who live in an English country home at the turn of the century.  This season, its second, has revolved around WWI.  A few episodes ago, one of the main characters suffered a spinal cord injury in battle.  Miraculously (and none too realistically), he recovered his ability to walk in last night’s episode.  He simply stood up again (well, actually, he jumped out of his wheelchair in order to help his fiancee, who was falling).  Apparently, he was lucky and only had spinal shock, and not permanent paralysis.  The reality, however, is that spinal shock would wear off within 30 days or so of injury, and there would be signs (twitching legs, ability to move toes, etc, etc) WELL before the walking.  You’d also lose a great deal of bone density and muscle tone in the time between injury and recovery, thus making it highly unlikely that you’d simply be able to stand up and walk.  It would take some physical therapy.  Now, I understand why, in terms of the story, the writers of “Downton” took this approach.  The reality is that, up until WWII, paraplegics on average, lived less than 2 years--not because of the spinal injury, but because of all the secondary complications and infections that come with it.  But, I get frustrated with how SCI is portrayed in various media forms.  This is but one example...the worse examples (in my opinion), are the stories that perpetuate the “work harder and you’ll be able to walk” myth.  For example (http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2012/01/29/MNFJ1MV70P.DTL) or a recent episode of Extreme Makeover: Home Edition (http://articles.baltimoresun.com/2011-10-21/features/bs-ae-extreme-homemakover-20111021_1_therapy-room-quadriplegic-patient-baltimore-s-kennedy-krieger-institute).  

Apparently, if you work hard enough, and put in enough hours with physical therapy, you’ll be able to walk (the converse of this being that those who are not able to walk have not worked hard enough).  These stories, while miraculous (and I’m genuinely happy for the people highlighted), do a dis-service to the majority of people dealing with SCI.  Most people don’t know anything about paralysis.  I didn’t before Jason’s accident.  This is why these stories can be so frustrating:  more often than not, this is all that people know of SCI.  The reality is that no amount of work can fix damaged nerves.  No amount of trying can un-bend or re-fuse a damaged spinal cord.  That’s simply not how the body works (and, as of now, medicine doesn’t know how to make these things happen either).  Also, paralysis means more than losing the ability to walk.  It means that nearly everything  below your level of injury has been compromised in some manner.  I would venture to guess that most people with SCI would gladly choose having some of these other complications resolved over regaining the ability to walk.  Jason seems to go back and forth on this...though at the moment, walking is winning :)  

I don’t mean to sound so very pessimistic, especially because I’m extraordinarily optimistic about Jason and his recovery.  Physical and exercise therapy continue to be an important part of Jason’s recovery, but the ultimate goal is to build strength, maintain bone density, and work with leg braces (though this type of walking will most likely not be functional).  We hope for as full of a recovery as possible, but neither Jason nor myself operate under the illusion that working hard guarantees anything with this injury.  I wish that reality was portrayed more often.  I guess it’s not as good of a story.   

Seven Months

Seven months already!  I do feel like life is about as close to "normal" as we could hope for at the moment. The only real thing left for Jason to do in terms of independent living is get back behind the wheel of a car. Hopefully, we'll make some progress with purchasing a new car in the next month or two (for those interested, the current front runners are...the Mini Countryman, Infiniti EX, and Audi A3).  It should only take a few hours to get the hand controls installed and then, once he re-passes his driving test, we'll be good to go.  So, without further ado, here's where we're at seven months out...

Mobility:  Great.  He's excellent at maneuvering, and loves doing wheelies all over the place.  He's begun practicing a bit more with going down curbs in the last few days (We're a little scarred from a previous attempts at curbs that ended with him lying flat on the pavement in a parking garage...)

Pain: The only pain he has is around the scar from his surgery, presumably from the rods that were placed in to stabilize his spine.  This isn't an everyday occurrence, and we think it's exacerbated by the seatback on his wheelchair, which, fingers crossed, will be replaced on Monday.

Exercise and Therapy: Six hours per week at SCI-FIT.  He also got a referral to return to PT to begin work with braces.  I'll be surprised, though, if that has started in the next month (have to go to PT, get evaluated, get fitted, get insurance approval, wait for braces to be made and delivered, and THEN he gets to start work...)

Daily Life Activities:  Fully independent, minus the driving.  I'm still a bit of a chauffeur (though the Google shuttle has saved me considerable amounts of time).

Sensation/Motor Control: Nothing too much new here, though lots of smaller things coming online (or, more accurately, things that he has felt before are getting stronger).

Biggest Problem Area: Having the patience to wait on medical companies/doctors...ugh.  It's taken almost two months to get a new wheelchair back...and that's with us paying out of pocket!

Biggest Success: Having a great check-up with his doctor yesterday at Santa Clara.  The resident who met with him was very surprised by all he's gotten back, and even asked what we needed them for since we were doing so well on our own :)

In the next month, we hope to... seriously get a new chair back!  And make some progress with the braces.

Love you all,

Ashley

Birthday Photos

Jason celebrated his 29th birthday yesterday (next year is gonna be fun!)...we didn't do too much, as it was a normal Thursday for us, meaning working from home, a chiropractor appointment, and three hours of therapy at SCI-FIT.  Jason made me promise not to tell the SCI-FIT trainers that it was his birthday until AFTER he was done..just in case they tried to make his workout extra "special" in celebration :)  We did have a small party last night, just the three of us, complete with pizza, cake, presents, and a balloon, that while technically for Jason, was completely appropriated by Savannah.  I hope y'all enjoy the photos...I know it's been a while since I've had any visuals :)

Savannah apparently thought the cake was for her :)