End of 2017/Beginning of 2018 recap

It's the Avalanche of a wrap-up recap. I'll do my best.

December 2017

I spent a lot of time trying to "winterize" Elena's trike. I made a clip-in shoe by putting the screw plate in an old sneaker, and attaching a SPD cleat (this typically wouldn't work for kids b/c pedaling with this on a soft shoe, like a sneaker, would bruise the foot; b/c E wears SMOs, it's fine). I also found a trike trainer, which was gifted to us by SportCrafters--it's a roller designed for single drive cycles (like E's trike, which has a single-rear drive). We try to practice 2x/week, but with her schedule it can be tough. Elena likes to try different positions on her trike, which is great--but these don't work as well off the trainer (she can tip). My goal with the clip-ins is to try to work on her endurance (we are at 20+ minutes on the trainer) and try to have her realize where her foot should be on the pedal when she rides (often she puts her heel on the pedal instead of the ball of the foot).

Shoe, cleat with pedal attached (note angle of the cleat position)

The Mule with roller trainer

Shoes on pedals. Note that the toe is angled outward to accommodate E's anteversion.

I added pedal extenders so E's knees won't hit each each other as she pedals. I am holding a smaller size, while the larger extender is mounted on the bike (my finger is touching it).

Our big event was we went to New York for Christmas! We have been to The City several times, and feel pretty comfortable getting around--but this was the first time in cold weather. And it was cold. This means lots of layers, and navigating transportation and layers with crutches/wheelchair.

Jason managed to snag a hotel close to Central Park. This would have been perfect in the summer, as we did a lot of walking; it was so cold, we didn't go far on foot. It was icy and slick in places, and when Elena is bundled up, walking is pretty cumbersome (winter coats with the loftstrand cuffs, especially!). The issue with hailing a ride so close to Central Park, once you get in the car, you literally don't go anywhere for at least 10 minutes--which makes walking, for most folks, a lot quicker than riding. In general, we took the chair with us; there were plenty of times we didn't need it (but still, better to have it just in case!).

Central Park carriage ride

Baroque Christmas tree

We enjoyed seeing lot of decorations, lights, and shows (including The Nutcracker and our favorite, the Brandenburg Concerto). 

Macarons in Bryant Park

Modern Pinball

Overall, the trip was a success, but navigating the city is much easier when the weather is warmer.

January 2018

Normally I put together yearly goals each New Year. The short list: (Amy) visit Antelope Canyon, work on jogging and biking; (Jason) rehab to be able to run his races/marathon; (Elena) complete the neighborhood bike loop (very hilly), visit Paris (?!); (Vivian) see Spanish dancing, go snowboarding, run a business (she wants to make her own shop).

E was inducted into the Astronomy Society here, in the first group of the Future Astronomer's Club. She can find stars using her telescope, use a sun scope, and identify a few constellations. It's a great group!

January was kind of a mess, given that's when we received Vivian's epilepsy diagnosis. We still managed to go skiing (E did a great job on her 4-track skiing, and Vivian learned to snowboard!), but the weather didn't cooperate so we only had one opportunity (short winter).

4-track

We also decided late 2017 that Elena would do less physical therapy and more personal training--the idea here is she would be doing more exercise in an age-appropriate setting (our therapy center is more focused on younger kids). We set out to find a personal trainer who would be fine-tuned to Elena's needs, as well as any other appropriate group exercise settings. She was a part of a short-lived group of disabled women, which she loved (unfortunately the group fizzled...we're working on other options).

Pumpin' it up with J at The Gym

February 2018

I went on a Tanzanian Adventure. It was incredible! (That's the short version).

Lion. NBD

At the Serengeti airport waiting on a bush plane. I'm nervous.

We switched Viv's meds from Keppra (it left her practically comatose, and that was below the working dose for her age/weight) to Trileptal. Short story here is, we're still trying to find a med that works.

Viv preparing for her sleep-deprived EEG, watching movies/playing games/doing crafts. Temple (our cat) trying to comfort Viv.

March 2018

Just trying to keep up. Elena is doing relatively well keeping up her schedule: before school 3x/week, Bearettes (elite chorus), DnD club (gaming) 1x/week; after school she has PT (every other week, Mondays), Personal Training (Tuesdays), Psych (most Wednesdays), workout group (Thursdays), and Personal Training (Fridays). Weekend is bike or swim. (sounds like a lot b/c it is; E is done weekdays by 530 at the latest). For Vivian, she has baseball 2x/week (games and/or practice), goes to the climbing gym with me a few times a month, and plays with friends regularly.

Almost caught up!!

Girls in the City: New York, AGAIN

I'll try to get back on schedule (end of summer, back to school) but this deserves its own post.

We headed back to NY for an end-of-the-summer trip. E and Viv refer these types of trips as "Girls in the City", as Jason works during most days of a trip like this. Our (first) trip (last year) was so successful, we decided to go again, only this time, armed with City Knowledge. You might notice E is wearing her "pocket sash", our current attempt at practical pockets. More on that in another post--she typically carried her clip on sunglasses, her metro card, and anything else little (lego person, map, money, etc.)

We traveled by train to NYC. We all love the train. The girls were busy with games, coloring, and walks up and down the carriages; parents read and planned our trip, while we all studied maps. Naturally, we brought Elena's wheelchair. Our goal this year was less on shows, more on seeing different parts of Manhattan. We were not necessarily going to shy away from the subway; we have became more confident with Elena and our ability to carry or use her wheelchair on public transit.

The weather was beautiful, even though it was a bit hot. It rained one day out of our week. The first day, we arrived in our lodgings near Chinatown and had an easy dinner. The following day, we headed out to brunch in Harlem (by Uber; the subway was going to take a long time!) and then headed to Central Park.

Elena received a song in her honor at Red Rooster!

We decided to try to ride bikes through the park. We rented three; a bike for Jason, a bike for Viv, and a bike for me with an attached trail-a-bike. I am the only parent who has successfully used a trail-a-bike, and my knee is much stronger than it used to be--but the last time E was on one, she was much smaller and lighter. I considered a tandem, and I am very glad I decided not to get one. Elena and I had a rough start; I felt very uneasy, had trouble starting once stopped (a significant issue, as bikes have to stop for foot/horse/vehicle traffic in the park), and Elena kept leaning from side to side so much I had a very difficult time maintaining balance for the two of us. Her feet kept falling off pedals (which would have been a HUGE problem on a tandem). We stopped by my request..I was ready to give up. I asked Jason to take the kids on the carousel, while I tried to collect myself and figured out what to do. I ended up talking with E about my concerns, and my plan to try again and what to do if our attempts ended in failure. We were a team. And we figured it out. We rode all over the park! Biking in Central Park was one of the top two things we all did in NY!

Jason daringly snapped this mid-ride

Strawberry Fields

Walking the bike was just about as difficult as riding it. For me.

Our only rainy day, we headed to the Museum of Modern Art. Elena loved it, Vivian not so much. Then we headed to the NY Public Library. Vivian loved the children's room, but E wanted more, so she and I explored the building.

Warhol Cows at MoMA

Trying to keep dry in the City

We were joined by our good friends the Gs; we spent a lot of time exploring parks and museums. We decided to head to Brooklyn from our Chinatown spot. Elena decided she wanted to walk the whole bridge; so she did!

Girls on the Bridge

Enjoying the Park

 We really enjoyed Brooklyn. Lots of walking, for all of us. We hopped on the Ferry to the Financial District.

Fearless Girls

The Bull

We enjoyed walking back through Chinatown. We ate in Little Italy. Viv and M and M and Z loved running around the parks, chasing pigeons and playing in fountains (Elena was tired). And, very important--if you are wondering if your kid can catch a pigeon, the answer is yes, so you better figure out how to convince your child to release it. 

Fountains

 

We went back to the Metropolitan Museum of Art. We loved it. There is so much to explore, and with the wheelchair, there is enough energy for everyone to see as much as they can.

The kids at the top of Belvedere Castle on the way to the Met

Bamboo Display at the Met

Lots of playing in playgrounds and parks, stopping along the way for cool shops and food. Loved walking the Esplanade along the Hudson. Enjoyed the shops and bars in East Village. Only messed up once on the Subway--and everyone in Queens was very nice. Vivian and M ended up joining in a square dance/dance/exercise group in Chinatown. J and I got to go out to dinner, big thanks to the Gs for watching all the kids! So much to see...the only repeat we did this year was the Met and Rockefeller Center (kids always want to visit Lego and see what new displays they have!). Everything else was new.

Pickle Shop!

Heart Balloon

Hailing Taxi

Japanese Crepes? Yes please!

Union Square

We ended our trip with an easy evening at a Cat Cafe, called Meow. It was a very weird but pleasant way to recharge after being in such a busy city.

Refuge for Cat Lovers

Our only issue, besides me being tired from walking, was that we forgot E's crutch hand grips and she mentioned she probably wouldn't be as tired if she had them. We'll remember next time--b/c we'll definitely be back!

Girls in the City: New York! (Recap)

The girls and I continued our Girls in the City tour from Chicago to New York by plane. Jason was working so much in New York, we had the opportunity to stay with him for a few days--we even invited some friends!

Flying with the wheelchair was easy (the hardest part is probably putting it in/out of cabs). I guess we could have borrowed an airport chair, or asked for a ride on a cart, but having the chair with us provided me with a lot of security (I could keep track of all our things and the kids, and was certain no one would be too tired).

We decided to try more walking as opposed to riding in the chair once in the city. This was a shift from our plan in Chicago; I think all the riding in the chair made Elena more stiff than rested--it's a balance that we didn't quite get right. Here, Elena did a pretty good job keeping pace (we were pretty slow), and we were sure not to plan to travel more than a few blocks on foot without the chair (sometimes we just brought it and didn't use it). And, sometimes we didn't bring it and wished we had (as you'll see in some of the pictures).

Rock Center

Sister LOVE

Mom, Pack Mule NY Edition.

Against reader advice, we did take the subway (not all the time). The difference was I never took it as a lone adult with the kids; I always had another grown up, so we could keep eyes on kids, or carry the chair, or one help E while the other keep track of everything else. The girls LOVED the subway. We took elevators when convenient; if it was only one flight of stairs, E typically climbed up/down.

Girls on the Subway

Lady Liberty in the distance

 

 

 

Doing their best Marilyn impression

There was so much to do...the girls loved it. The weather was hot, but gorgeous. We went to the Metropolitan Museum of Art--I wasn't sure how much the girls would like it. Elena loved it! I could have been there all day. Our favorites were the Egyptian exhibit and the sculpture garden. I also liked the impressionist paintings.

The Met

The Met

Splashing

Central Park was more of a challenge than I thought. Mostly b/c even with a map, we found it hard to find the nearest restroom. The park is so massive, we only saw a small part of it. 

 

 

Boats

Alice in Wonderland

Carousel

The girls LOVED the Rockettes! I wish I could have taken a picture of how spellbound they were during the show. It was awesome! We also did some shopping, but with all the choices (and not much knowledge of what was fun for kids) the stores were a bit of a bust. We did find some really awesome glasses for Elena!

Pack Mule: Vivian is tired this time

New Yorkers were very kind--especially on the subway. I'll admit, I was surprised (maybe I shouldn't have been? Shame on me.). People were looking out for us, and were very friendly and helpful.

Girls in the City

Insomnia Cookies at night

Girls in an Elevator

Art Park

 My sister joined us for the last few days in the city. We went to the High Line--really beautiful!

Popsicle on the go

 

 

 

 

 

Chilling Out

Pack Mule, thirst quenching edition

We didn't do much New York at Night with the kids; they were typically worn out every evening. The grown up ladies did have one night out, which was really fun!

Times Square

We were all a little sad when our week was up.  We had such a fun time exploring, we weren't ready to leave. I was always very apprehensive when I thought about Elena in the city, because of all the walking she would have to do. But our experience taught me something very different.  I realized that if Elena can successfully navigate the subway, and learn her walking limits, her universe grows much larger. There is so much to see and do in a city like New York; if Elena can master the transportation piece, she can enjoy as much of it as she likes despite her disability. It was a really positive revelation. I think weather also is a factor; I can't imagine trying to navigate with lots of bulky clothing and coats.

Pack Mule; heading back home by train

Again, we enjoyed a relaxing ride home by train (we still LOVE the train!). It was great to sleep in our own beds, and be in our own house, and be in our own town. But it's official. The kids love traveling and exploring! Huge thanks to Aunt Kate, and the Gs who joined us! We loved your company and all your help!