Our Christmas

I hope this finds all of you enjoying a lovely (or not so lovely if you're dealing with this nasty Bay-area weather) day after Christmas with your family and friends.  We had a great few days in the Leyba household.

On Christmas Eve, Savannah and I baked red velvet cupcakes to be served with our Christmas dinner.

Then, in keeping with one of our traditions, Jason, my brother, and I played board games while waiting for a certain little girl to get tired.

We got ready for Santa Claus's upcoming visit.

Santa was good to Savannah.

 And he enjoyed the cookies and milk (though she was really mad that he ate them...one of the first things she said Christmas morning, was "where are my cookies?").

He left her a lovely card.

 I think she was most excited about the chocolate in her stocking (Santa, not Mrs. Claus, was responsible for the stocking....Santa went a little overboard with the sugar!)

Fresh morning buns and croissants for breakfast....oh so yummy.

Savannah's main gift was a new baby doll, which she loved and played with all day.

Dresser for baby clothes.

Sav asked me for my phone and then proceeded to take photos of her baby, just like I take pictures of her :)

Christmas dinner...a mix of super unhealthy (but amazingly good) Southern fare and, in our one nod to healthiness, some veggies not casseroled or over cooked.

Savannah read books to her baby before bed.

Love you all,

Ashley

Thursdays with Savannah

For over a year now, Jason has been going to SCI-FIT on Thursday afternoons.  Because of the geography of this (SCI-FIT is in Pleasanton, Sav's school is in Sunnyvale...for non-Bay area folks, these are not very close to each other) and the fact that we are a single car family, I've always kept Savannah home from school on Thursdays.  Before Jason could drive, we'd drop him at the gym and would hang out in Pleasanton....we'd get a late lunch, go shopping, go to the book store, play in a local park, whatever we wanted....I think I know all the kid-friendly places located within 20 miles of SCI-FIT :)  Now that J can get himself to and from the gym, though, Sav and I stay close to home.  Thursdays have become my favorite day...I try not to do any work (or, if work must be done, it happens while Sav is napping) and Savannah and I spend loads of quality time together.

I thought I'd share a glimpse into the best part of my week....

This day began with a mild disagreement about how much cold-weather clothing she needed to wear.  She's not a fan of heavy jackets...which doesn't bode well for our East coast trip in January :)

Normally, we go to the Farmer's market that's across the street from our house on Thursday mornings, but it was closed this week for the holidays.  So, we walked down to our local park and played.  I think she was happy with the substitution.

Sonja decided to get in on the sliding...Savannah started yelling, "No, Sonja!  It's not your turn!"

The walking to and from the park, plus all the sliding and swinging, made for a tired little girl.

Post-nap, we made cookies for Jason.  She's quite the accomplished baker!

I really love that I get to have this day with her each week.

And, just because I've been fairly terrible with updates of late, here's some other things we've been up to!

We had a play date with one of Savannah's best friends at Studio Grow two weeks ago.  This was filmed in the dance studio and, for me, is about the best visual for joy I've ever seen :)

Savannah and I went to my department's holiday party.  

Jason has been using his braces around the house a lot more...this time standing sans walker.  He was trying to determine if he could stand at the counter and use his laptop...not quite there yet.

But he can have some great daddy-daughter time with Savannah.

I hope everyone is enjoying the holiday season and that you are all able to spend time with the one's you love.  

All my love,

Ashley

Abilities Expo, Thanksgiving, Santa, and Some Pretty Amazing Videos

Hello Everyone!

I really need to get better about these updates, especially since my school schedule is slowing down at the moment (for a few weeks...everything ramps up again in January).

We went to the Abilities Expo in San Jose a few weeks ago.  When we went last year, we were very new to the SCI world and the whole experience was a bit overwhelming--information overload.  This year was different-we knew what we wanted to look at (stuff for J's chair) and had a better time.  It was amazing to see how many people we knew there-the SCI world, even in the vast Bay area, is quite small.  It was also a day to realize how lucky we have been with J's injury.  We've always been hesitant to feel better about our situation because people around us had it worse (worse injuries, more complications, etc etc), but it is hard not to have this happen--not to see that things could have been worse. The only way I can rationalize it is that I'm certain there are people that have looked at our family and been grateful for not having to walk (or wheel) in our shoes.

We had a lovely Thanksgiving day. Savannah helped me bake and cook (she's quite the little chef).  Another Cal grad student came over for dinner (he made the most amazing turkey) and we had a great dinner.  

The real fun for me, though, came the next day when we started decorating for Christmas.  We decorated a wonderful gingerbread house (this was mostly Jason and my brother, Bo--Savannah was more interested in hoarding the candy for herself).  We also put up a tree, planted Amaryllis bulbs, put together a Christmas Lego scene, and assembled our Advent calendar (Savannah got her first prize from this yesterday...she's a fan).

Savannah also visited with Santa...for our Bay area parents, I strongly recommend the Santa at Stanford Shopping Center...he spent over 10 minutes with Sav.  He read her a book about the North pole and gave her a cute little reindeer stuffed animal.

Jason's mom, Gail, has been visiting with us for the past few days.  On a normal day, Savannah is spoiled, but with Grandma in town?  Wow, spoiling is in overdrive :)

But since Gail is in town, I was able to go with Jason to SCI-FIT yesterday and get some video footage of what he's up to these days....wow...I was so amazed at the progress he's made.  Really impressive.  I think the folks at Kennedy Krieger are really going to be excited about the gains he's had in the last 6 months (another reminder for MD folks, email me if you'd like to meet up while we're in town in January!).  

Walking sideways

Kicks!!

I'm not entirely sure what this is called, but it looked difficult.

I hope you all are having a great weekend (and for our bay area friends, staying dry in this torrential rain).

Love you all,

Ashley

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.