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 :)

Standing Up! At Home!

So, as you've probably figured out by now, we're home.  It's been a busy almost two weeks: lots of laundry, unpacking, cleaning, grocery shopping, and all the other fun stuff that comes with returning from a month long trip.  Savannah also made things interesting for us this week...she came down with Hand, Foot, and Mouth Disease, which is scarier sounding than it actually is.  She was lethargic, in pain, and developed all sorts of sores in her mouth and down her legs.  She's much better now, and hopefully will be returning to school on Friday.  It's been lovely to have her home, and get lots of cuddles (though I think we watched "The Lion King" in excess of 50 times...I can recite it now...).  The only down side of this has been that I've gotten very little done lately.  I go back to teaching next month and have been trying to get my syllabus and reading list finalized...hard to do that when you have a toddler who wants you to sit on the couch with her.

In Jason news, we're still trying to get all the medical equipment he was prescribed at KKI.  We should receive the e-stim device in the next few days, which will be great.  The standing frame will probably take a few more weeks (if we're lucky).  He's got his KAFO braces and we recently bought a walker, so tonight was his first time standing at home.  I forgot that Savannah has not really seen her daddy stand much since his accident.  Once he got up, she looked at him and said, "Dada, you're very tall."  It was sweet to hear :)

On another note, thank you for all the lovely messages and kind thoughts sent our way on July 9.  It was actually a very peaceful day.  We're doing as much as we can in terms of recovery, which is why I think we were both at peace on the anniversary.  We're very happy with where we are right now.

And now, some pictures....

Just a quick one of Savannah in her dance clothing (there won't be any more for a while). We've dropped dance classes for now since she was NOT a fan.  We'll try again next year.

Standing at home for the first time in over a year.  We'll move on to walking at home once I get a walker that is a little bit wider.

Family photo :)

Love you all,

Ashley

One Year

Tomorrow marks one year since the accident.

I have mixed feelings about this day.  July 9, 2011 is a day that is burned into my brain.  I still get a little panicked when I think of that phone call, the one where some voice on the other end said that my husband had a life threatening injury.  I remember the terror and uncertainty, the frantic drive to Reno, and being so thankful that Savannah was there, because had I not needed to care for her and make sure her needs were being met, I'm quite certain that I would've been an absolute mad woman.  It was a terrible day.

On the other hand, it was the day my husband did NOT die.  It was the day that would ultimately bring us closer together as a couple and a family.  I remember running into another woman at the hospital in Reno.  Her husband had also been in a serious accident, but she was happy because, as she told me, "I could be planning his funeral, instead I'm planning his homecoming."  A great attitude, and one that I have tried to adopt.  Because no matter how bad his injury seemed, it could have been infinitely worse.  And for that I am grateful- so, so grateful.

And I'm grateful for you.  For all of you who have reached out in a million different big and small ways.  From writing letters to making meals to watching Savannah for us, we've been amazed by the outpouring of support that we have received.  I've felt a lot of things this past year, but I've never felt like we were in this alone.  And that makes such a difference.

This has been a year of ups and downs, but more ups than downs I think.  It's been a story of progress and, thankfully, not too many roadblocks to that progress.  When Jason was first injured, there were no answers about long-term prognosis.  When we did get information about the long-term, it wasn't terribly positive (you'll be independent, but will never walk again).  But he seems to have defied the odds, or at least defied the doctors.  And I get the feeling he's not done yet.  This story of recovery is just beginning.  

With all my love (and gratitude),

Ashley

Train!

Savannah and I made it to SC early this morning (and Jason and Nick are back in CA, all settled in).  Our train ride didn't go quite as planned...we left 2 hours late, got in to Columba 3 hours late, had about 3 hours at the beginning with no air conditioning, and I got little to no sleep because my daughter refused to share any of the bed bunk with me.  BUT, other than those things, it was a lovely adventure.  Savannah can't stop talking about how she rode the "choo choo train."  Since it was so much fun for her, I'll definitely consider doing it again in the future.  All things considered, it was less stressful than flying and WAY less stressful than driving down on our own.

Relaxing in the lounge...it's a hard life.

Running off some excess energy before we boarded.

FINALLY on the train!!!

Having a little snack.

Watching everyone get on board.

Despite the obvious fact that the fans were blowing in the vent, there was no cool air.

Which was very sad indeed.

Beautiful views.

iPad tea party

And this was too funny not to include...I don't think I've ever captured her actually in the act of falling asleep :)

In other news, Jason got his KAFOs today, so he'll be able to start incorporating them into his SCI-FIT workouts tomorrow.  Sav and I spent today at the local children's museum with my dad and brother, and she also got to run around with one of her cousins this evening (which she thoroughly enjoyed).  We're off to the zoo tomorrow...hopefully we won't melt.  The heat here is ridiculous.

Hope everyone had a happy and safe 4th of July.

Lots of love,

Ashley

Adventures in Electricity (or the lack thereof)

Those of you in the VA/MD/DC area already know this, but last Friday night there was a huge thunderstorm in the area.  That was our last night in Baltimore, and we were awoken by lots of noise.  The wind from the storm had somehow blown open several of the windows in the bedroom and living room.  We were lucky in Baltimore, though, because the electricity did not go out there (or at least not at our hotel).

We were scheduled to head to Fairfax yesterday morning...where they had lost electricity.  We checked out of the MD hotel...couldn't call our hotel in Virginia, because their power was out and, plus, once we got on the road, cell phone reception was incredibly spotty due to the number of cell phone towers that had been impacted by the storm.  When we arrived at the hotel (finding it was fun...we're use to relying on Google maps on our iPhones, but we had no cell or internet service in VA....had to find it the pre-technology way!).  The hotel had no power, but they let us check in.  In order to make sure the room was okay for Jason, I had to check them all out using the light of my iPhone to look around.  We settled in to the room (sorta...didn't unpack just in case we needed to move again).  Did I mention it was hot?  Like over 100 degrees outside hot?  So, yeah, that was fun.  The one good point in this was the confirmation that Jason has recovered some of his ability to sweat below his injury...that was one of the big reasons he's had problems with heat in the past.  He did much better yesterday.

Initially, we were told that the power would be out for 2 days (!!!), but thankfully that was not the case.  All in all, the power was out for about 14-15 hours.  We've cooled off considerably since then, and the folks at the hotel have been nothing but wonderful.  I'm hoping that all of our friends and family in the area have also cooled off since yesterday and once again have power.


The lack of electricity did not hamper Savannah's fun...she enjoyed playing in the curtains for much of the afternoon...

And snuggling with Daddy when the lights came back on.