Lots o' Pictures!

Instead of lots of text today, I'm going to share lots of pictures.  Here's what we've been up to!

This sign is outside our elevator...can you spot the problem?

Working on the abs and obliques...Jason wants to get one of these machines (coincidentally, these are for training skiers...apparently, you're supposed to stand on the black cushion and balance as you slide from side to side...one of the many ways the folks at KKI adapt other types of equipment to fit their needs).

A little aquatherapy

While we spent the first week at KKI, Savannah was with Danny and Gail.  She spent a lot of time working on puzzles.

She helped with yard work...it was unseasonably warm last week.

And got some good quality time with Grandma.

When she returned to Baltimore, she was SO excited to go to the aquarium!

Not the best picture of us...

Dolphin show

A day away with Mimi and Aunt Debbie...at the American Girls store!

Very excited about her new puppy.

Port Discovery Children's Museum

Play date with an East Coast friend!

Lunch at KKI

KKI has a great area with toys for kids...including a playroom with free childcare (for children over 3 years old)

Savannah wanted to go on the historic ships in the harbor, so off we went.  It's MUCH colder this week!

After the boats, we went to the top of Baltimore's World Trade Center.  We're a long way from home!

Tomorrow is Jason's last PT session at KKI.  He'll get his home program information and we'll schedule our next visit.  We're also hoping to get in a morning visit to the aquarium.  We fly back to CA on Saturday morning! 

Hope you all are well!

Lots of love,

Ashley

18 Months...and a day

As of yesterday, Jason is 18 months post-injury.  Sometimes it's hard to believe it has only been 18 months...it feels like we've been dealing with SCI for much longer than that.  That being said, Jason has made a remarkable amount of progress in what is (in the SCI world at least) a very short period of time.  We met with his primary doctor today at KKI and he had a (VERY) thorough exam.  During the exam, the doctors (he had three today) found something new;  he has reflexes in his right and left hamstrings now that he did not have six months ago.  This could mean that some new nerve connections have been made.  Or it could just be an interesting development that doesn't manifest as anything bigger.  I'm choosing to be optimistic on this one and believe that exciting things are in the works.  I'm looking forward to his next exam, which will be in July, right after he passes his two year anniversary.

Today was also the day that I worked up the courage to ask a question I've kinda dreaded hearing the answer to:  can we have more children?  Going into today's meeting, I knew that having more children would not be a straightforward, simple endeavor.  And not just because of whatever injuries Jason might have sustained-I have fertility issues. It was hard for me to get pregnant with Savannah;  fertility drugs were required and it was a difficult process, both emotionally and physically.  Obviously, I would go through all of that again and more to have our sweet girl.  But I don't know that I have it in me to do it again.  When we asked the doctor about more children, he seemed to think that it was completely realistic for us to have more...when I mentioned the problems I've had before, though, he seemed less confident.  Also, once he remembered we already have one child, he gave the impression that we should be happy with that and not put ourselves through the fertility-wringer (he didn't say this in so many words, but it was implied...).  I get the feeling that having another child might not be in the cards for us.  I don't know how I feel about that.  Mostly okay, I think.  Maybe because we're not ready for another baby at this exact moment (I'd really love to finish my dissertation before thinking of adding to our family), I'm not too distraught?  We'll see if this feeling lasts post-dissertation.

Jason has been working hard during his PT sessions.  This go round seems a lot more focused than his first visit.  I think this PT is spending less time showing Jason all the different forms of therapy KKI offers, and is focusing instead on specific areas that Jason could improve.  For the past few days, this has primarily been his core strength and his technique in the braces.  We're learning a lot and Jason will be able to show his trainers at SCI-FIT some new exercises.

Tomorrow, he'll be doing some aqua therapy in addition to his land therapy.  The we get to enjoy an unseasonably warm Baltimore weekend.

Hope you all are well!

Lots of love,
Ashley

Round Two, Day One...and some fun with a fire alarm!

Yesterday was Jason's first day of therapy at Kennedy Krieger, though to call it a day of therapy is a bit of an overstatement.  It was more of a three hour long evaluation...checking in with what he's gained in the six months since he was last there.  His PT checked every muscle group for signs of movement, measured his flexibility in the lower limbs, checked his balance, and gave him a walking test.  We were pretty excited with the results.  He now has verifiable muscle movement in his lower abs and hip flexors (last time it was a "flicker," but the PT said it was pretty strong this go round) and also has some movement in his glutes, which is totally new.  Things are coming back online...albeit slowly :)

His flexibility is pretty great, with the exception of his ankles.  The PT gave us some exercises for that, though she did note that as soon as he could stand regularly (with the standing frame), the ankles would get stretched that way.  Right after we talked about this, I got a call from our medical equipment supplier saying that the standing frame has (FINALLY) been delivered.  Jason will be fitted for it the Thursday after we get back.  Hallelujah, that only took six months (longer if you count our first, aborted, attempt to get one).

The walking test measured how far Jason could walk in six minutes.  He did this on the last day of his June visit and got to just around 100 feet.  Yesterday he got a couple feet further.  I think he would have really blown his previous test out of the water had we brought his KAFOs.  Instead, he was using KKI's adjustable KAFOs, and he just wasn't as comfortable in them.  When we come next, I'll find a way to safely transport his own braces...I imagine it will involve lots of bubble wrap and maybe a hard shell suitcase.

The goals for this visit are to improve his walking (and his posture/technique while walking), and to build up his core strength.  The PT was really happy with J's progress and mentioned that, assuming all goes well over the next two weeks, she's going to recommend that our next visit be for only one week. This is great because it will allow us a little more vacation :)

For the most part, these first few days have been lovely.  The one exception to this would be the 11:30PM fire alarm we got to experience on Sunday night.  We're staying on the third floor of our hotel, so when the alarms started going off (we weren't in bed yet, so at least we didn't have to deal with trying to get dressed before getting out the door), we were faced with the prospect of getting Jason and his wheelchair down three flights of stairs.  In theory, we know how to do this.  The reality is that he's only ever practiced going down 3-4 stairs...not full flights of them.  When we got to the stairwell, it was to be confronted with concrete stairs (I was hoping they'd at least be carpeted or something, just in case J fell).  We were quite the sight to behold.  Jason goes down stairs backwards in a wheelie, with one arm holding on to the stair railing and the other hand holding his wheel, making sure he's going straight.  I was behind him, holding on to the back bar on the chair back, also helping him go straight.  For the first flight of stairs, I tried to block the chair with my body, holding on to him down every step.  This hurt...I've got the bruises to show that this wasn't a particularly good method for either of us.  After the first flight, we both were more comfortable and felt reasonably confident that J wasn't going to fall down the stairs, so I backed off a little bit (still holding on to the back of the chair, but not with a death grip).  Several people passed us, but, surprisingly (to me at least), only one man actually asked if we needed any help.  Not sure if this meant we looked like we knew what we were doing, or if people were just concerned with getting themselves to safety.  When we got to the lobby, we learned that it was a false alarm.  Ugh.  We had to wait about an hour in the lobby, though, because it took them forever at that time of night to get a security person to over-ride the alarm and let the elevators function again.  Thankfully, Savannah was with Jason's parents, so we didn't have to worry about her in the midst of all of this, too.  Oh well, alls well that ends well, right?

Love you all,
Ashley

Air Travel with a Two Year Old

So I've decided, after taking both daytime and overnight flights with Savannah in the past 6 months, that there is no "good" time to fly with a two year old....or at least not our two year old.  This is not to say that Sav is a bad traveller.  She's actually quite good-she didn't cry, talk loudly, get in other people's way, or act in any way that would disturb other travelers.  She was, however, incredibly busy and fidgety...she kept me on my toes.  I had to have a new activity, snack, or iPad app every 5-10 minutes it seemed.  She's not at an age where she will sit still and calmly watch a movie for two hours (though I had delusions of this happening....).  Here's what our cross-country travel looked like yesterday.....

Savannah's doll (whose name is either Marianne or Angel, depending on when you ask Sav) made the journey with us.

Super excited to go on an airplane!

After checking in, we went through security.  Between managing Savannah and the wheelchair, this is normally quite the headache, but the folks at SFO let us go through the staff security check point, which meant we were the only ones there.  We got to take our time, everyone was amazingly friendly, and, best of all, there was a huge window looking out over the runway, so Sav got to watch planes land while we took off shoes/took out laptops/etc/etc/etc.  After all of that, we stopped for a quick bite to eat.

We let Savannah pick out a new Llama Llama book for the trip.

Waiting patiently at the gate, with her travel backpack.  We only use this for trips and she's not allowed to look inside until we're on the plane (this time, her backpack included "I Spy" puzzles, a coloring book, colored pencils, and her iPad, which was loaded with a few new apps).

On board, playing with the in-flight entertainment system.  Whenever possible, we fly Virgin America.  Besides excellent service (seriously, our flight yesterday had some of the nicest flight attendants ever), they also boot up their entertainment system pre-departure and allow you to watch movies/TV shows during take-off.  This might not be a big selling point for most, but the ability to watch "Madagascar 3" makes it much easier to keep a 2 year old seated and buckled up during the very long take-off period.

She shared her seat with her doll.

Baby-sized headphones.

Lunch was great-perfect for a toddler.  Not a full meal, just lots of great food to snack on.  Savannah approved :)

Love the iPad for travel!

Post-lunch set up.  Whenever possible, we try to sit in the bulkhead aisle.

VERY quick nap....maybe 30 minutes?

In DC!

While waiting for Jason, she decided to "swim" all over the airport floor.  

We are all settled in to our hotel in Baltimore.  It's very nice and in a great location: Starbucks and movie theatre attached to the hotel building, Whole Foods is a 2 minute walk, plus there are lots of great restaurants all around us.  The room itself is also one of the better wheelchair accessible rooms we've seen thus far.  

Savannah is spending this first week in Fairfax, VA with her grandparents, which will allow me to go to all of Jason's appointments this week.  He starts at KKI tomorrow afternoon.  We're both excited to see what kind of progress he'll make during this stay.  During his last stay, Jason walked with the braces for the first time.  Who knows what this trip holds in store for us.

Probably lots of updates over the next two weeks-hope you don't get sick of me :)

Lots of love,

Ashley

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