Long Overdue Update

Sorry that it has been so long since my last post.  It has been so busy around here lately!  It seems that all fellowship organizations and conference organizers conspired to make everything due on November 15 this year...so I've been crazily writing grant proposals, abstracts, paper proposals, budgets...oh, and a full draft of a chapter of my dissertation!  Thankfully, I'm done.  I'm actually proud of myself for getting all this wrapped up a few days ahead of schedule.  Now I just have to wait several months to see if I'm awarded any of the grants...But, I imagine you're not here to read about my dissertation/fellowship progress....

The cushion, which I complained about in the last post, seems to be working out a lot better now.  The jerry-rigging has held up and Jason has been a lot more comfortable.  Thank goodness.  We're headed to the Abilities Expo in San Jose this weekend to check out different parts for J's new chair.  Hopefully, we'll get that at the beginning of next year.


Other exciting developments in the last month:

• The standing frame has been ordered!  We should have it in around 3 weeks! FINALLY-we've been waiting for close to a year for this...we're very excited.
• We celebrated Halloween with Savannah, and took her trick-or-treating for the very first time. She seemed a little wary at first, but after the first house, she looked at us and said "Okay.  We go to another house now."
• Savannah and I spent an afternoon in San Mateo, watching airplanes land at SFO.  She's rather obsessed with all forms of transportation at the moment, so this was about the best afternoon ever :)
• We booked flights for our January trip to Baltimore.  We're doing a daytime flight this time, in the hopes that Sav will not be overly tired and will enjoy the flight.  Fingers crossed.  Can't be worse than overly tired/overly excited Savannah of last June's flight.

And now..some photos!

Plane landing at SFO

School Costume

Trick-or-treating costume

Jason putting the finishing touches on her whiskers

Waiting in line to vote

The Wheelchair...ugh...

Seriously, getting this chair fitted out properly is one of the most frustrating parts of this injury.  You'd think it'd be a relatively uncomplicated to get properly measured for a chair, but no.  Since every injury is different, every chair has to be different, so it becomes something of trial and error trying to figure out the best configuration.  Jason enjoys looking into all of the equipment possibilities (very similar to what he did with his bike), but even he is getting annoyed by all of this, particularly when badly fitting parts end up causing him a lot of physical pain.

The most recent development is a new cushion.  We'd been waiting on this for quite a few weeks, so we were both excited to try out what is regarded as the best cushion for SCI injuries.  It's custom fitted to Jason's body and, when used correctly, completely eliminates the possibility of pressure sores on the ischial bones.  All very great features.  (I will add here a gripe about insurance...we have a great policy and they only cover $250 for cushions...that seems like a sufficient amount until you begin looking into what cushions cost.  LOTS more than $250...).  When we picked the cushion up, his entire chair got a tune up.  The folks at Wheelchairs of San Mateo are AMAZING and spent over two hours tweaking the chair, adjusting the back rest, changing out breaks, re-inflating tires, and more.  We're so happy we chose to move our business to them...its' great to work with people who are invested in what they're doing and take pride in getting it right.

New cushion!  Much better posture! 

At first, it seemed like the cushion was working out really well, but after a few days, Jason was experiencing back pain and felt twisted in the seat.  So, we went back to the wheelchair shop, where they were able to see a problem pretty quickly.  The chair is just too big..Jason has too much room to move around and, when he does, he gets out of position on the cushion and problems ensue.  The techs at the shop were able to jerry-rig the chair to work pretty well for now...lots of foam padding stuffed in to make it hard for his legs to move around.  If you look at the first photo above, you can see his legs splayed out a bit...that shouldn't happen.  He was given the bigger chair because, when he was originally fitted in the hospital, he had just lost something like 30 pounds.  This dramatic weight loss is fairly common after a major injury, so the chair was ordered on the assumption that he would re-gain most, if not all, of the weight he lost.  He didn't.  He actually lost more.  So now we need a new chair.  We're hoping to hold off on ordering until after the Abilities Expo in November-that's when all the chair companies will be in town and he'll be able to try out a lot of different products and configurations.  He knows what he wants on paper, and has researched and read reviews, but, as we've learned, just because something seems good on paper, doesn't mean it will work for him.  Y'all keep us in our thoughts with this one...you'd think we'd have this sorted 15 months in, but no....

Other than this issue, things have been going well around here.  We're all pretty busy right now-Jason is trying to adjust to his new role of tech lead for his team and I'm trying to furiously write a chapter of my dissertation before mailing out fellowship applications for next year.  Teaching is going well...I'm enjoying being back in the classroom, but I'm glad I will be taking on lighter responsibilities in the spring (might be grading papers for a class, but no teaching duties).  I'm cracking down on the dissertation.  I'm ready to be done with it!

We're finalizing our winter/spring plans at the moment.  So far, it looks like we'll be back to Baltimore for round two with Kennedy Krieger from January 5-19.  East coast/Baltimore folks, let us know if you'd like to meet up!  We'll be staying in the Inner Harbor this go round (and not six blocks away at the top of a hill that's really difficult to get up in a wheelchair...)  If I do end up taking on an academic position in the spring, we'll head back to CA immediately after that's finished.  I also need to travel to Geneva, Switzerland for a couple of weeks in the spring...go enjoy the beauty of the Alps from the inside of the Genevan Archives D'Etat.

And, for your viewing pleasure, a few photos of our gorgeous girl.

We're still trying different ideas for Halloween.

Another option, courtesy of the dress-up box.

Ready for Baltimore in January!

Giggling with Daddy

Love this girl.

Love you all,

Ashley

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,

Ashley

Healthcare

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.

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,

Ashley

All Dressed Up

We went to a friend's wedding yesterday, which gave us the rare opportunity as a family to dress up a bit.  We're more casual around the Leyba household, so this was definitely a fun treat (just to give you an idea of how often this happens, Jason's dress shirt was still in the dry cleaning bag from the last time he wore it....in 2007).  Savannah was amazed to see her mommy wearing heels and daddy wearing a tie.  I had planned on having my brother get a nice family photo of us all together, but (not surprisingly), we were running late and there was no time for that.  So, instead, I've got a variety of shots...none with all of us together though.

We had a lot of fun together, and Savannah enjoyed running all over the place with the other children who were there.

In other news, we've begun potty training Savannah.  So far, so good.  I think she was ready for us to finally start this with her, which is why she's taken to it all so easily.  She'll have her first day in the preschool room (!) tomorrow, and I think she'll be okay to ditch the diapers...fingers crossed anyways :)

I've also returned to teaching this semester (first day of class is the 29th, though I've been back on campus for a few weeks already taking care of all the prep work).  Jason has started taking Savannah to school one day a week, which has gone surprisingly well.  We were a little worried about how they'd do navigating the car seat situation, but it's gone fine so far.

Jason is doing well...keeping up with his Kennedy Krieger home program.  The paperwork has been submitted to insurance for the standing frame, so hopefully we'll hear back about that soon.  We've been told that we should expect to be denied the first time around....so I'm gearing up for a battle with insurance....have all the abstracts from studies that prove the benefits of standing for folks with SCI.  Though who knows, we've not been denied anything yet by insurance, so maybe we'll be pleasantly surprised.

I hope that all of you are enjoying the last days of summer.  We're off to the water park to enjoy the warm weather!

Love you all,

Ashley

Wheelchair Frustrations, Part 89674981

One day, we'll have this wheelchair thing figured out.  Sadly, that day is not today.  After Jason's SCI-FIT session this morning (scroll to the bottom for a great video of him walking while there!), we headed to Pittsburg for a meeting with a seating specialist.  We've known for a while that the cushion on J's chair was not right for him.  It was uncomfortable and did not offer much in the way of support or pressure sore prevention.  The folks at Kennedy Krieger tried to get him in with a specialist there, but there wasn't enough time for a full evaluation.  Hence our journey today.  After a few minutes with Antonio, the owner of the wheelchair shop, we realized we should have done this long ago.  He knows wheelchairs, and he has a passion for getting it right and working with his client.  That has been missing from the people we've dealt with previously....

The cushion he has now is definitely wrong, so that's the first thing we need to fix.  The specialist also recommended changing the foot rest height and angle, the "dump" (amount the seat angles down), the type of seat back he has (if we do this, it'll be his third seat back), and the amount of room he has around his thighs.... That's if we keep this chair.  Right now, J is in an 18 inch chair....he should be in a 16 inch chair.  Insurance only pays for a new chair every 3-5 years, so we're in the position of debating how many changes we should make to the current model before we just throw the whole thing out and start over agin, out of pocket.  This has been one of my biggest frustrations over the last year.  When Jason was fitted, he was only 2 weeks out from his accident, had 9 broken bones, and was in a full chest and neck brace.  It was not an ideal time to be fitted for a chair.  Not surprisingly, he's had problems, lots of problems, since getting his chair last fall.  I really do not understand why hospitals fit you so soon...why they don't allow you to stay in a loaner chair at least until your bones have healed and you're out of the braces.  It really wouldn't add that much time to the process, but it would lead to far fewer frustrations down the road.

Anyways, enough of that rant.  I can't complain too much.  We're lucky enough to be able to make changes to the wheelchair in order to get it right for Jason.  A lot of other people have to wait the 3-5 years in a bad chair before they can get anything fixed.  I can't begin to imagine how much that negatively impacts their daily lives.

Now, on to the video I mentioned earlier.  Jason walking!  Hope you enjoy :)