Friday, January 27, 2012

Apologies for the Silence

Sorry that it's been so long since my last post-we've been busy!

I was in Scotland for the first few weeks in January (it was an incredibly productive trip) and, while I was gone, Jason's mom Gail was in town helping with Savannah.  They all did well, despite a few unexpected bumps in the road.

Jason is still doing great.  He's working out at SCI-FIT 6 hours per week.  I caught the tail end of his session yesterday and was able to watch him working on crawling with his trainer.  While he still needs the trainer's assistance in order to maintain balance, I was amazed by how much he was able to do on his own. He can use his hip strength to pull his legs forward.  Such an amazing improvement over the last few months.

We've got some exciting things coming up-Jason meets with his physiatrist on February 7. He should be getting his referral back to PT for the leg'll still be a while before he actually gets up in the braces, though. Nothing happens fast in medicine :)  So, he'll get the referral, make an appointment for PT (which could take some time), then go in to get measured for braces, then wait another few weeks for said braces to be manufactured and, maybe Jason will be in braces in March?  This is assuming, of course, that insurance doesn't slow things down any further...

In wheelchair news, J's new seat back should be coing in sometime next week.  Hopefully, that'll eliminate the pain he's been having in his back (nothing too terrible, but enough to be annoying).

We are also looking forward to a big day next week: Jason's birthday!! When Jason was in the hospital, we used his birthday as something of a "goal" date.  We talked a lot about what he would be able to do by his birthday.  Initially, all of our goals revolved around walking and life being exactly as it was pre-SCI.  This was, of course, before we had any knowledge of what it means to have a spinal cord injury.  I still think Jason will walk again someday, but walking isn't everything anymore.  After 6+ months, you realize that life in a wheelchair can still be a great life.  That's a realization that takes some time to come to, and is one that I imagine many people reading this won't entirely understand.  It's hard to explain to others that we're okay, and will continue to be okay if things stay as they are.  In all the ways that matter, Jason's achieved, and exceeded, any goal we set in July.

Love you all,


Friday, January 6, 2012

Six Months (Well...almost)

Next Monday will mark six months since Jason's accident.  I'm leaving for Scotland on Sunday, though, so I thought I'd do the update a bit earlier.

Mobility:  Great. Looking forward to beginning work with braces in the next few weeks.
Pain:  Normal pain (i.e. his back/neck might hurt if he's had bad posture throughout the day, or his arms might hurt after a workout). Nothing terrible and, more often than not, nothing that even requires Ibuprofen.

Exercise and Therapy:  We've upped his time at SCI-FIT to six hours per week. He is really getting a lot out of those sessions. Yesterday was his first day back working out since the holidays, and he said he could feel a lot more during his session (feeling more in the low back and quads). I also got to watch his session for the first time in several weeks. I could see a BIG difference. Things have gotten easier for him, and his movements seem smoother and more controlled.

Daily Life Activities:  I can't think of much that Jason can't do now, other than take Sonja on long walks by himself (he can do short, solo walks without any trouble). He'll be put to the test this coming week-I'll be gone and Gail is having a medical procedure done on Tuesday that will put her out of commission for a bit. Jason will be responsible for almost all of Savannah's care...
Sensation/Motor Control: So, exciting news on this front. He's getting more consistent feeling in his quads (Still just the "deep touch" type of sensation), and he can flex his calves now! It's not a very strong movement, but it's definitely there. This means some signals are getting to the lower limbs...woohoo :)

Biggest Problem Area: The wheelchair...we've been trying to get him a lower seat back, which has turned out to be harder than it should be. Jason has an appointment with his wheelchair vendor on Monday, so, hopefully, this will all get resolved....

Biggest Success: Flexing his calf muscles :)

In the next month, we hope to..... get the official referral to return to PT for work with the leg braces (appointment for that is Feb 7), get the wheelchair situation worked out.
For those of you interested in some community service/involvement.... I've been in contact with Andrew Skinner, the founder of the Triumph Foundation(, and, after I return from Scotland, I'm hoping to begin working with him to put together care baskets for the new SCI patients at Santa Clara Valley Medical. Let me know if you'd be interested in helping out with this (by donating items for the baskets, writing notes, etc etc). A lot of the people at SCVMC are on their own most of the time, since their families don't live near the hospital, so getting a care package would really lift their spirits.

All my love,