Tuesday, September 25, 2012

Go Forward

Today would have been Christopher Reeve's 60th birthday.  To commemorate all that he did for SCI awareness and research, the Reeve foundation (which also celebrates its 30th anniversary today) has marked today "go forward" day.  In addition to raising money, the Foundation is trying to raise more awareness about SCI, so that research for a cure can go forward.  Additionally, September is Spinal Cord Injury Awareness month here in the US.  It hasn't really gotten much attention, though...perhaps we need to get bracelets and adopt a SCI color :)  If you're willing and able, I'd encourage you to head over to the Reeve Foundation website (www.christopherreeve.org) to donate to the cause today.

The Reeve foundation is a great organization and one that, as of last Tuesday, I'm a part of.  I'm now a certified Peer Mentor with the Peer and Family Suport Program that the Reeve Foundation runs.  I went to a training seminar last week in Oakland and met all the organizers and the other peer mentors.  It was great.  I was the only able-bodied person there, so I was somewhat anxious about having any credibility with the group, but all was well.  Once I pass my background check, I'll be able to go into the rehab centers and hospitals to meet with the newly injured and their families (Jason will help as much as work allows with this too...we're something of a package deal).  My first goal, assuming Santa Clara allows it, is  to set up a support group for spouses/partners/family members.  There aren't enough resources out there for family members of the newly injured, so I'm hoping to close that gap a little bit.  At least in the Bay area.

In update news, Jason was able to do some advanced maneuvers in his braces this weekend.  He can now go from standing (holding on to the walker) to laying on the ground, to back up to standing again.   I'm hoping to go to SCI-FIT with him this weekend, so hopefully I can get some pictures of this.  Sounds pretty awesome.

I hope you are all enjoying the beginning of fall.  We certainly are (though it'd be lovely if the temperature decided to stay on the cool side...).

Love you all,


Wednesday, September 12, 2012


I’ve wanted for some time to write about healthcare, and our experiences navigating insurance/doctors/medical companies.  Not surprisingly, this is something close to my heart, and an issue that I’ve learned quite a lot about over the past 14 months.  I’ve not really written about politics on this blog before, and it’s not my intention to make this a regular occurrence, but I feel like, in this particular case, it’s appropriate.  A few caveats before I go on, though.  I recognize that some (or maybe even most) of you won’t agree with my thoughts on this.  I understand and respect that.  My goal is not necessarily to change minds, so much as share with you some of the experiences we have had.  I fully respect your right to disagree with my beliefs on this.  That being said, I’ll get on my soapbox....   

I support Obamacare (though I don’t think it goes far enough...change sometimes needs to be incremental) and, quite honestly, the issue of healthcare alone is important enough to determine who I will vote for in two months (albeit there are a lot of other reasons I’ll be voting for Obama).  This being said, very little of the healthcare act actually affects our family at this point.  We have excellent insurance and, unlike a lot of other people who have had to deal with serious injury or illness, we’ve not had any problems with our carrier denying claims.  We have savings and we have a great family support system that would have stepped in financially, had it been needed.  There is, though, one aspect of Obamacare that does affect us quite a lot: the end of lifetime limits on insurance policies.  

Prior to the AHA being passed, most policies had a limit on the amount of money an insurance company would pay out over their lifetime, an amount that, generally speaking, was in the million dollar range.  This sounds like a lot of money.  It IS a lot of money and, for most people, they’d never really come close to hitting this amount.  But to anyone dealing with “catastrophic injury” (the official insurance-jargony term for what we’re dealing with), one million dollars goes very, very quickly.  I don’t want to list out all of the bills we’ve gotten in the last 14 months, but I do want you to have some idea of what medical care costs...because I think that sometimes gets lost.  I read a CNN article about this a few months ago, and someone noted that, even with a serious illness, it would take decades to hit a lifetime cap.  Not true.  Not even close.  For one week in the ICU, our insurance company was charged $140,000.  One week.  Being airlifted off a mountain?  $30,000.  New wheelchair?  $6,000.  This is not even touching the other big expenses: neurosurgery, transportation to San Jose from Reno, four weeks of inpatient acute rehab, medicine to treat the infections he got while in said hospital, MRIs, CT Scans, physical therapy, braces of almost every conceivable variety, and on and on and on.  We could hit one million dollars quite fast...Jason is only 29, after all.  When the Supreme Court ruled on the constitutionality of Obamacare in June, I watched nervously, literally feeling as if I would be sick...because if it got overturned, it would be hard to keep doing the things that have helped with Jason’s recovery.  Not having to worry too much about medical bills has allowed us to pursue non-traditional therapies that insurance does not cover, namely SCI-FIT.  We’re the lucky ones, though.  We do have insurance and, if lifetime limits were re-instated, we’d be able to figure something out.  Not everyone has that luxury.  The average salary in the US is somewhere around $40,000.  How do you deal with several hundreds of thousands of dollars of medical bills without completely ruining your life?  What kind of payment plan do you work out with the hospital?  Which brings me to my next point...

For me, healthcare is an issue of compassion, of social justice, and simply taking care of people.  In this country, we should not have people terrified of going bankrupt after a serious injury, or making medical decisions based entirely on financial concerns.  I can assure you, that having a loved one in the ICU, or being told that they might die, or knowing that your world as you have known it is over, is enough.  You don’t need more to worry about than that.  You just don’t.

I recognize that there are those who will argue that the US can not afford this...can not afford for everyone to be insured.  My response to that is two-fold.  First, in 2010, the Congressional Budget Office projected that Obamacare would actually reduce the deficit by $124 billion over ten years (of course, this is a projection, and not perfect, but it is from a non-partisan source).  Second, I think funding healthcare should be a priority and, too often in debates about budgets and deficits, we forget that we’re ultimately talking about what our country’s priorities are.  Making sure our citizens are healthy should be a top priority:  it is something in which we should invest.           

Off of the soapbox now...back to your regularly-scheduled updates soon.

Sunday, September 2, 2012

Back on the Bike (well, sorta)

Happy long, Labor Day weekend, everyone!  So far, it's been a great one in the (very full) Leyba household.  Right now, we've got family in town with us, so every space is occupied come bedtime, and Savannah is being incredibly spoiled :)

Today was a big day for us...Savannah got her first bicycle!  As I've written about in the past, this purchase/milestone was a tough one for us.  Pre-accident, when J was involved in all the cycling events, we talked a lot about Savannah's first bike, and all the great things we could do with her once she got it.  Obviously, things are a little bit different now.  But, she's wanted one for a long time, and was promised that she'd get her very own bike once she was potty trained....so we headed out to the toy store today (I'm still not up for visiting the bike shop at the moment) and bought a tricycle and helmet (our girl is fearless, so this was absolutely necessary).  It was assembled during nap time and waiting for her when she woke up.  Were we to do something like this again, I'd wait til she was a little more awake before presenting her new toy to her...she was really confused by there being a bicycle in her living room!  She's still getting used to it and, as the photos below show, she's not entirely clear on how to sit on it?

Contemplating the bike...Jason's KAFOs and walker in background

I'm sure she'll be zooming around on it in no time.  

In SCI-related news, Jason had a great session with his PT at Santa Clara last week.  She's really impressed with his walking skills using the KAFOs....we set some new goals, one of which is for J to be able to walk into the restaurant (using braces and walker) for his 30th birthday in February.  Amazingly, this is a realistic and reasonable goal at this point.   As he was walking around the gym on Tuesday, one of his PTs from his inpatient days came to chat with me.  She asked if, one year ago, I would've thought this possible.  Honestly, I wouldn't have thought this was possible a few months ago...Jason continues to amaze and impress me.  His quiet determination and resilience is something to behold.  On the way back to work, I told him that I could plan a big party for his 30th with all our friends and family there (something I've wanted to do since he's come home from the hospital, since I firmly believe he deserves to be celebrated)...and then he could walk in and it would be incredible and people could clap for him.  At which point, he looked at me and said that if that was my plan, he'd forego the braces for a while.  He's not a fan of the spotlight...or parties.  So, I'll just have to videotape it and post it here :)

This week was also big for me...I interviewed to become a peer mentor for the Christopher and Dana Reeve foundation, and the class I'm teaching met for the first time this semester.  The interview went really well..I'll be finishing up training in mid-September for that, and then I'll be able to help the spouses/partners/families of those who are newly injured SCI-ers.  There's a lot the doctors and hospitals can't tell you, so I'm hoping to be, at the least, a good resource for those new to this life.  Teaching also went well, but first days generally do.  Nothing too hard about handing out syllabi and making introductions.  I did have to do a mini-lecture on the succession issues that caused the 1745 Jacobite rebellion...none of my students have had any Scottish history...but last week was light on teaching.  This week will be different.  Hopefully, though, it'll be just as good.

Tomorrow, we're off to the waterpark.  Savannah is a HUGE fan of our local park, so we're hoping to enjoy it a few more times before summer comes to a close.  Hope you all have a great day too.

Love you all,