"What do you mean it's purple?," and other observations from the road

We made it to South Carolina!  But first...how we got here :)

Jason finished this round of KKI last Friday, and completely rocked his final evaluations.  The main test the use to measure his trunk strength is what you see in the photo below.  He has to stretch out (forward and side to side) and see how far out he can reach without losing balance.

In January, he could go about 1-3 inches in different directions (left side is the strong side, so he's always been able to go a bit further in that direction).  On Friday, he could go 4-6.5 inches.  In order to appreciate the magnitude of these gains, keep this in mind: most people regain an inch of strength/control per YEAR.  Jason gained 3+ in 6 months!  Once he makes it to 10 inches, he'll be considered "normal," and they'll move on to a new metric for him.  We're hoping he can gain another few inches in the next year.

We began our southward journey on Saturday morning.  We drove from Baltimore (or were driven by Jason's mom) to Fairfax, where we picked up the rental car.  After lunch, we set out for Fayetteville, NC, thinking we should get there in about 4-5 hours.  It took over 6.  We hit majorly bad traffic on I-95 (which, we've decided is worse than California's I-5 in terms of sheer terribleness), and then once we got out of the traffic, the thunderstorms rolled in.  Savannah was none too happy about these--they completely terrified her, and I wasn't much of a fan either, seeing as how for large parts of the drive, I could only see a few feet in front of the car.  I'll take California sunniness, thank you.  About 25 miles out from our hotel for the night, Jason decided to check the weather.  He looked at me and said, "you know that terrible weather through Richmond?  That was red on the weather map.  We're about to go through a purple section."  At which point I replied, "what do you mean it's purple?  What does that even correspond to?"  Turns out, purple means really, really nasty weather.  It was a fun way to end the day.  

The next day dawned sunnier (thankfully), and we set out for the last leg of the trip to SC.  We promised Savannah, who had been a complete trooper, that she could go to the pool as soon as we got to the hotel.  So, we checked in and Savannah and I got ready for the pool.  We walked outside only to learn that the pool was closed for the afternoon.  To compensate, I told Savannah she could swim in our tub in the room (it's a really big garden tub, so this worked), and that she could have grilled cheese for dinner, and ice cream for dessert.  She enjoyed her tub swim and then off we went in search of dinner.  We learned pretty quickly that the area around our hotel is terrible in terms of accessibility (the hotel itself is great)--very few cutouts from the sidewalk, uneven surfaces, etc etc.  There is a sandwich shop near us, so we went there in search of Sav's grilled cheese.  But they don't do hot sandwiches.  Boo.  So we returned to the hotel, where I thought I'd order room service for her (ice cream and grilled cheese both being on the menu).  We were told the kitchen hadn't opened that day.  Ugh.  Then, she went to the hotel pantry area to get a popsicle, only to learn that someone had put all the ice cream in the refrigerator--it had all melted.  I know that in the grand scheme of things, these are all very small problems, but, to a 3 year old who has spent the past two days in the car, they were pretty terrible.  

Thankfully, everything has gone well since or rather inauspicious first day.  We've been on a carriage ride, seen lots of family, celebrated my dad's birthday, gone swimming (the pool re-opened yesterday!), and played outside.  We're here for another few days before we begin the trek back up north!  Enjoy the picture below.

All my love,

Ashley

This was on the bed in our hotel in Fayetteville--it was good to know the sheets were clean, but I had kinda assumed they would be.  Makes me wonder what they did before they started putting these notices everywhere in the hotel?

Happy to see her Poppy.

Swinging at Beaufort's Waterfront Park

Beautiful marshlands

Jake, our horse for the carriage ride

Feeding Jake a carrot

Giving Poppy his birthday card

Happy to be playing outside

Fish, and Pirates, and Progress, Oh My!

We are already nearing the end of Jason's week of PT at Kennedy Krieger, and oh what a week it has been!  But, before I get into the evals and exercises, let's chat about the non-KKI things we've been up to...

On Monday, we went to a members-only evening at the National Aquarium.

Savannah was super excited about going (and how cute is she with the pigtails?!)

We got to check out a few of our favorite exhibits at the aquarium.

And look at a new one they had just opened.

This is Savannah's "shark face"

On Tuesday, I surprised Savannah with a ride on a pirate ship!  She's been really interested in pirates and boats lately, so I thought this would be a great adventure for us.  Jason didn't come alone--he didn't like the idea of being stuck out on a boat in a wheelchair (and, despite being labeled wheelchair accessible, I'm not certain how anyone in an adult-sized chair would have gotten onboard).  Sav was very excited....at first.

She thought this was Captain Hook's boat.

And enjoyed seeing the "ducklettes" that were swimming near the boat, though she was sure to tell them to move away from the boat before it sailed away.

Once we got onboard and the "pirates" began speaking with her, Savannah was less excited about the whole outing.  At one point, she was sobbing saying she wanted to return to the hotel.  Unfortunately, we had already pulled away from the dock, so we were in it for the long haul at that point.  

Once the pirates started telling stories, and talking about treasure, Savannah calmed down and got interested in what was going on around her.

Things got even more exciting when the children were told the story of "Mad Dog Mike," a rogue pirate who was trying to steal their treasure!

Savannah bravely manned the water cannons and duly aimed for the villainous pirate when he came by.

Post-pirate excursion, she was excited to play pirate princess with her cloak(which Grandma made for her) and sword (her sword is tucked into her skirt in this photo).

Despite this being our fifth week that we've spent in Baltimore in the last 13 months or so, we're still finding things to do and keep Savannah occupied.  I think we'll definitely go on a pirate boat ride when we're next here.

Now...on to KKI.

Jason's PT, Sara, was very happy with his progress since January.  She said that, in six months, he's made more progress than they expect people to make in two years.  Huzzah!  He's got a lot more strength in his abs/hips/glutes than before, which is exciting and promising (though, as always, we're aware that this could be it for progress...everything extra at this point is just icing on the cake). He had his full medical evaluation yesterday and that doctor was also pleased.  He's not progressed enough for his injury level to be changed, but it's awfully close.  Last time, he was labeled at T5, ASIA B (normal sensory and motor function through the T5 vertebra, ASIA B= incomplete, some sensory in tact below injury level).  He's a T6 on the left side, but not quite on the right side...this follows his pattern of recovery thus far.  He must have landed harder on the right side, because it seems as if the damage is more significant on that side (his left side is noticeably stronger than the right...to the point that now we have to worry about scoliosis b/c of how much he naturally pulls to the left...).  Generally, his right side does catch up with the left, so we're thinking he'll be re-classified (again) at his next visit. Happily, that visit will be a full year from now.  The doctors and PTs are very happy with his home program and progress and, now that we've got medications figured out (that takes some time, and lots of tweaking), they feel comfortable going a full year between visits.  Very exciting.

I do have some pictures from his PT sessions at KKI this week, but they are all of Jason in a harness....which isn't exactly the most flattering look.  I told Jason I wouldn't post them....though if he annoys me any in the next few days, I may just post them here :)

Tomorrow is his last day at KKI this go round, and then we're off to SC for a bit!  That will be quite the road trip--keep us in your thoughts as we get that underway.  Sav isn't always a big fan of long car rides :)

Love you all,

Ashley

Air Travel and KKI (round III)

We made it to Baltimore!  After an 1.5 hour delay at SFO due to bad weather at Dulles, we were able to board the plane (this went really well--one of the better wheelchair boardings, actually). We told the attendants at the gate that Savannah was very excited about flying and planes (and talked about some of the fun dramatic play that has been happening in the Nutmeg room centered around travel), so after we got Jason on the plane, Savannah got to meet the pilots and sit in the cockpit! She was very quiet and shy--I think she was a little overwhelmed by this experience (that, or she really wanted to get in her seat and begin watching shows she doesn't get to watch at home....I'm looking at you, Dora).

Savannah was very well behaved during the flight. We tried a new method of keeping her seated during takeoff and landing (the trickiest parts of the flight for us now that she is too big to sit in our laps).  In the past we used M&Ms as an incentive to stay seated and buckled in--this worked, except then she was on a MASSIVE sugar high, because she was more or less eating chocolate for 20-30 minutes.  This time, we gave her a sucker.  Still sugar-y, but one small dum-dum style sucker kept her seated for like 45 minutes.  Win.  And not nearly as much sugar.  Double win.  During the flight, she ate a ton (salami slices, grapes, pretzels, crackers, cheese, popcorn, milk, honest-ade, etc, etc, etc), watched a couple shows/movies, and enjoyed playing with the new toys in her travel backpack. A good flight overall, though it seemed like we hit turbulence every time I stood up, searching for something in our carry-ons....

We got to Baltimore around 9pm...Savannah hadn't napped on the plane, so she slept while we were in the car and, of course, woke up fully refreshed when we got to the hotel.  We're still struggling with jet lag--she went to bed at midnight the first night, and 11pm last night.  Unfortunately, she's not sleeping that much later in the mornings (she got up around 7 this morning).  Hopefully, she gets adjusted to the time difference sooner rather than later.  Momma needs some sleep.

Jason begins his third round of therapy at KKI this afternoon.  We're excited to see what has changed in the last six months (his full medical evaluation won't happen until Wednesday), and what he can work on next.

Hope everyone had a great weekend (and that those of you in CA are enjoying lovely, non-humid weather...it's hot here).

Lots of love,
Ashley

All dressed and ready to go!!!

At the airport, super excited.

Delayed.  Boo.

Lots of time spent watching planes take off and land

Getting bored.

Thankfully, the terminal had a small area for the little ones to play.

Pilot Savannah

New Takeoff strategy at work.

He is unable to stay awake on a plane....whereas I am unable to sleep on them...

New dolls!

Grandpa giving her a ride...he didn't realize that doing something like this is no quick exercise...she wants to go again and again and again....

Breakfast--one of the servers gave her a popsicle because she was so well behaved.

PS-I turned 30!!! And Jason, being the amazing husband that he is, flew in three of my best girlfriends for a weekend in Napa.  We had loads of fun....

When your child is tech savvier than you are...

Just a quick post...more to come later about what's been going on around here lately.  It's been very busy between work, dissertation, and family...plus, we're headed to the East coast for two weeks starting tomorrow (!).  As I was getting Savannah's iPad ready for the plane ride, I came across some photos she took of herself...I'm not even sure how she got these filters, and, honestly, I thought I had a few more years before her tech skills surpassed my own.  Sadly, not the case....thought you all might enjoy though :)