Welcome Fall (Apple picking)

We love fall! Fall brings apples, pumpkins, long sleeve shirts, leaves, and lots of festival opportunities!

Since I have a lot to post, I'll make this short. We kicked off the apple season with our family friends, the Cs. The mountain orchard involves a lot of hilly walking, which is a challenge for Elena and myself. Everyone was pretty tired after picking (you have to walk a long way to get to the apples!).

Pre-pick

Viv found a good one!

Perfect Pick

Apple Girls

I thought we'd have too many apples, and have to make apple butter, applesauce, and apple muffins. WRONG. These kids ate them all before they had a chance to be cooked. We'll have to go back!

5th Grade Field Trip

Hooray for the first field trip of the year! Elena's school went to a nearby camp for a challenge course day. Her team and I tried to plan the best we could--but the camp would not give us specific information as to the day's schedule and terrain. Parents were asked specifically not to come as chaperones. Two days before the trip, I called the camp and tried to get my questions answered--they were not concerned about Elena's mobility. I have been to that camp. Their idea of accessibility is great, if you can walk. The terrain is steep everywhere, nothing is paved, and the "ramps" are either mulch, gravel, or woods, with scattered steps. The staff seemed to think I was worried about Elena handling the challenge elements; I was concerned about traveling to and in-between them--they are between 300 and 600 feet apart, through hills and woods. They assured me if Elena got tired or complained of pain they could put her in a wheelbarrow. I was not pleased. I told them to expect me at the field trip, which they were happy to oblige. E's teacher was happy I'd be there. I packed everything I could think of--wheelchair (although I figured we wouldn't be able to use it), foldable step stool for her to take sitting breaks, water, her adventure vest (in case she wanted to carry small things), and thought I'd offer piggyback rides if she preferred that over the wheelbarrow if she got tired (wasn't sure how that would go, given my bad knee, but I'd manage).

Thursday morning I went to leave to meet them at the camp...and couldn't find my keys. Couldn't find them--looked everywhere...and figured, well, I'll just have to get to the camp when I can. After a very long, emotional hour, I did find them. I finally arrived to meet up with E at the second station. The terrain is no joke--completely wheelchair inaccessible, and very challenging for a knee reconstruction patient.

Elena was fine. I put her neoprene pads on her crutch handles--helps cushion her palms, but they are too hot for everyday use. She liked that, but didn't want the stool or any other assistance. She was relieved I was there (she was expecting me), but was happy to tell me she did not need my help.

She didn't need me all day. I mean, I gave her a sip of water every now and then. But mostly I was available, but invisible and unnecessary--the best kind of field trip chaperone, right???

The students had lots of problem solving as a group for their challenges. They had to think things through as a team, and it was really awesome to see them succeed. All the challenges had a physical element, and Elena was not involved in carrying anything--but she seemed content to be a part of the team and had her ideas heard, she was not afraid of speaking up. She never fell, and even though she lagged behind walking between elements, I did not get the impression that she was left out.

Unfortunately the challenge elements weren't mapped out around the camp to minimize walking. This would have been really helpful for everyone, especially Elena. She was tired, and her group ate lunch last. Her group was also last on the biggest challenge, the climbing structure.

She went last in her group--which was fine, she got a nice sitting rest and ate a good lunch. I taped her hands (we learned she gets blisters very easily during her climbing study this summer, so I made sure to bring some) and made sure her harness and helmet fit (she's the smallest student). The climbing structure itself was too large for her--I knew she would need extra assistance on belay since she could not reach some of the climbing obstacles. The counselors told each group if they wanted to do the zipline (!) they would have to get to the top.

Climbing, determined and brave

ZIP!

There is a "catch rope" you have to drop near the end of the zip line. If you forget to drop it, the zipper would hit the rubber stop on the line (perfectly safe, but not as comfortable) and then each student was helped down by a ladder. I was worried that E would forget to drop the rope (she didn't), but just took a deep breath and decided she was more like her classmates than unlike them, and waited.

Look at that smile!

She walked back, the last zip liner, a triumphant look on her face! I was stunned she made it the whole day (I even left early). She really didn't need me (last year this would have NOT been successful). She did not complain of knee pain after school, despite being absolutely exhausted.

Wins all around!

Beach Vacation

We just got back from our beach vacation!  And what an amazing vacation it was--beautiful beach, very warm water, lots of family, wonderful weather--a well deserved break with the best kind of company.

(I have some great pictures, courtesy of my sister and Dad!)

The beach house was less than a block to the beach--too long for E to walk it without her crutches (not getting those sandy!), too short to drive (sometimes).  E used her beach walker some of the time, or got a piggyback or wagon ride.  The closest beach access point was not handicap accessible (more on that in a minute) so there were a lot of steps--Elena did most of them when she wore her beach shoes (but they got so full with sand they became a problem and we opted to carry).  

Once on the sand, E was more independent than ever.  A dream come true.  She did use her beach walker, but not much.  We did get a few questions from vacationers (one of them a pediatric OT!).  In general, Elena walked on the sand (with or without a hand) or crawled (if around tidepools).  I'll admit, her gait looked pretty bad, even painful at times.  But she was independent and she enjoyed herself, and she sure does need a break, so I let her do it her way a lot of the time.

Girls loved the tidepools!

The Beach Walker got left behind a lot this year

Viv and the lounge-a-gator

Making a pool is tiring

"Baby whales"

Since Vivian is older now, and E's mobility has improved, I wanted to try a few new things at the beach.  One of them was having E ride a wave...which at first, petrified me.  She can now right herself in a swim vest, swim independently in a swim vest, and even swim a few feet without one.  But I was worried about waves and the current.  I thought about it a lot, and decided with the right supervision, water depth, and gentle waves, we could do it.  

E on a skimboard

Skimboarding was one of Viv's favorite activities!

Skimboarding with Daddy

Elena loves to "Wave Jump".  I'm glad she likes it, but it is REALLY hard on my back.  

Ouch

Viv jump on the way to another wave

And now...my favorites--kids and I CATCHING A WAVE!

Vivian

Vivian

Elena and I wait for the right one

Elena

Elena

Vivian

Elena

E cant' wait until the next one

Vivian

 Out of the waves, we had all kinds of fun too...playing with family, including cousins from Ohio!

Pool Party!

Cousin catepillar

E and R playing chess

Puzzle

Sorry championship (insert pic)

And another personal favorite of mine...Bike riding!  ON THE BEACH!  I took the trail-a-bike down the handicap access ramp a few blocks from the beach house (it was still really close).  We just made it around the corners...the trail-a-bike is pretty long, and we need a large turning radius.  Elena was strapped in and I walked the bike in the parking lot, on the ramp, and in the deep dry sand.  I was sweating...it was hard to keep the bike up in the slippery sand, but I did it.  It was worth it.

Sand Riders

And some of my favorite pictures...my kids, both of them--walking--on the beach!

Family

Sisters sitting in a W (verboten, but they did it anyway)

Walking Together

Elena on the beach

Huge thanks to my parents for making this beach trip possible!  I couldn't have handled the girls without help from Aunt Kate and Uncle Andy (and Ms. M), and it was wonderful to see the Ohio crew of MA and Hawk, and Matt and Alli and the kiddos!  Thanks always to FAS for making the trip from New Orleans--it is always great to see you!  THANK YOU!  

Beach Walker 2.0

I had to make the Beach Walker bigger--and when I did, I realized that it wouldn't easily fit in the car anymore. After a lot of mistakes, this is what I came up with. A simple change of the design. I re-used the same wheel and axle as before, and added a "spacer" piece so I don't have to remake the portion containing the wheel again. The spacer isn't epoxied into place like almost everything else; it's secured with bolts and butterfly nuts. Beach Walker in two parts for transport

Spacer and bolts--spacer is 1" pvc pipe, into 1 1/2" pipe--just shove in the spacer tight, and use a drill and the right size drill bit. Might need a hammer to get the bolt in for the first few times you take a apart and put it together again.

Putting the bolt in place

Make sure the end of the bolts are pointing inward, so not to have sharp edges that can harm any bystanders

Beach Walker 2.0 Assembled

Now that this is ready...well, I dont' think Elena needs it. Her crutches are the best option for every terrain--except sand--that we've encountered lately. But maybe this will help some of you out there.

School Field Trip

I have a lot to catch up on, so this will be brief. I went on Elena's last field trip--it was to the farm belonging to one of E's PE teachers. The plan was for a nature hike (!), and a tour of the farm animals, and to learn about plants and watersheds. Elena's group went first on the nature hike. I tried to hang back, to see how E navigated in a group in difficult terrain.

This is about how far back Elena stays as the group moves. The terrain was difficult; there were flat parts, but it was thick with leaves and branches that you had to step over. Elena fell only once. Interestingly, she didn't choose to start to follow the group until they were at least 15 feet ahead. I wondered if that was why she was always so far behind--but I think a lot of it had to do with the fact that I was there, and she wanted to stay close to me. I had brought the wheelchair and the beach walker--the two best mobility tools we have to handle difficult terrain. Well, they can't handle a farm. The absolute best mobility option for Elena is her crutches. Well, halfway through the hike--at the bottom of a "loop" path, down a hill no less--Elena ran out of energy. I wondered what would help her...my best guess was a seat to rest (which was not an option). I ended up giving her a piggyback ride back. A pack animal (or human) was the next best option out there, save a Segway or a mini-ATV. After a break, she was fine and independent for the rest of the trip. It was very, very educational to see E's dynamic in a group of peers--she tends to stay back for safety (getting knocked over in a huddle)--but starting so late after the group leaves is something we need to work on. E's teacher told me she doesn't do this all the time, so I think it was my presence that kept her back further than usual.

Daisies and DynaSplint

Lots been going on here. As usual.

Since E's last field trip, I've been thinking a lot. We've taken Little Red on a spin, and the experience taught me a lot..but I haven't had a situation where E was way behind her peers until the last Daisy trip.

The girls went on a field trip to a local farm. I figured rolling hills over a large area. WRONG.

Feeding the Chickens!



Besides the distance, there were obstacles. HUGE ONES. With roots, a few cute steps...and 30+ degree grade hills, craters made by 400+lb pigs, covered by foot-high tall grass. It wasn't easy for any of the able-bodied girls to climb some of those hills.

Giant Pigs make craters all over the ground



E's wheelchair wouldn't have helped. AT ALL. Maybe the Beach Walker could handle some of the holes in the ground, but probably not through the tall grass (both the wheelchair and the Beach Walker stayed in the trunk). E's crutches were her best bet, but with the uneven ground, they got stuck in the ground holes and the going was slow. In some cases, E insisted on walking herself. She went down hills, over small narrow short wood bridges over water, and uphill until she tired (which wasn't far up the hill). For the hard parts--and honestly, there were many--I carried her piggyback. I didn't want to carry her, but the terrain was so incredibly difficult I felt there was no other way. Elena tried very, very hard--and she did walk A LOT. It was obvious, though, that she could not stay with the group on her own.

That isn't to say we didn't have a great time--we did! E got to grab an egg from the chicken hen house, feed chickens, see huge pigs, pet younger pigs, pet cows, ask great questions, pet baby goats, see all sorts of fowl, and learn what we eat from the farm. All the girls seemed to enjoy the farm and each other's company, which is what counts.

The biggest Field Trip Lesson I learned: If possible, ask to get a head-start on the next destination. I'm glad i got the opportunity to figure this out...b/c E has a school field trip tomorrow.

One of the many reasons E fatigues easily is due to her posture--b/c she doesn't stand with her legs fully straight, her large muscles are never at rest. She crouches, which is like standing in a perpetual squat. As she tires, her legs get weaker, her crouch gets worse, until she falls. It's easy to see when Elena walks without her braces--with her braces, she leans into them more--and on some surfaces she slips, and falling with crutches is very messy. This past week she's had a few bad falls--once off her bike (she was riding with friends in a cul-de-sac!), and one down the outside steps to meet her bus yesterday morning (she's NEVER fallen or even been unsteady, and the ONE TIME I told her to go ahead she took a spill)--Elena managed to get most of her fall on the grass (I have no idea how) so she avoided the worst of the stone steps. She's got more bruises than usual right now.

One thing that would really, really help is if she could stand at rest. Stand with her legs straight, not locked, at rest. I don't know if that is possible for her. Tone, slight contractures, habit and spasticity all hamper her ability to stand tall. At Elena's last ortho appointment, her doc mentioned a sort of dynamic brace to try to help her knee extension. I got the call this morning that it was ready. Tim got it to me this afternoon.

This brace is called a DynaSplint. It goes around the knee, and actively puts pressure (the tension can be easily adjusted) to straighten the leg at all times. It can bend, but there is resistance. It can be worn while moving upright, but right now our focus is on a passive stretch--wearing it while sitting or lying down.





Tim told me she'll see the most benefit the more she wears it--as in, hours per day, preferably while sleeping. I told him I could give him 15 minutes per day right now. Elena is a very active child, and for her to wear this while moving around would probably be unsafe (at least, initially). I refuse to ask her to wear it at night right now; we have spent so much time and effort getting to our current wonderful bedtime situation, it is not worth risking a setback.

During our reading time tonight




We currently have the DynaSplit on a month-by-month basis. If E tolerates it we'll buy it; so far, she does. We could use this for years. LIterally, she could use this brace for a decade. That's worth trying.

Lewis Ginter Botanical Gardens

Today was another beautiful busy day. We started it off with a Feldenkrais session, and then headed out to Lewis Ginter Botanical Gardens. We've never been there before--but I heard it was pretty. And pretty flat, but large.

I wondered whether or not to bring E's wheelchair--and I decided against it, because I thought Vivian would need a ride also, so we brought our ancient Sit-n-Stand stroller. I think it was a pretty good decision--it's much easier to get in and out of for Elena, and there was a lot more at the Gardens to explore than we realized. My allergies were TERRIBLE, so I spent literally every moment revolving around sneezing and sniffling, but it was worth it.

Peter Rabbit greeted us!



We meandered down to the Children's Garden. We saw something sparkling just past the bridge--it was a garden of Pinwheels!



The Children's Garden had so much to explore! Structures, trees to climb, places to hide, food to eat, things to touch/wear--it was incredibly interactive!

Here are E and Viv in the "Little Houses"




They had bunnies on display, you could pet them if they let you



There was a cool treehouse that overlooked the water. As we were going up to the house, a little boy behind us kept talking about Elena.

"Mom, look at her leg. She must be hurt."
"MOM! She must have hurt both legs! She has something on both of them. Was she in an accident??"

The mother probably didn't know what to say. At first, she just ignored her son. As his questions got louder and consistent, she answered,

"Well honey, I think she's moving about just fine."

"But Mom she must be hurt!"

The path widened and they went past us. I never turned around, but I did watch Elena to see her reaction. She just kept plodding along. She tells me she "ignores" most comments, but I know they get to her.

The Treehouse Tower is one big room with different art and lots of windows. We ended up being right next to the boy, all staring out the same window. He stared at Elena. She caught him staring--and then he started staring at the floor.

Elena went right up to him while he watched his own feet.

"I'm not hurt, you know."

He looked at her. E smiled. He smiled back. I got out my camera to take a picture, hoping I could get just my girls in the window. The boy's mother started to usher him away, and he looked at me and yelled "Hey can I be in your picture too?" And I said "Sure!" and then Elena went and nuzzled right up to him. (!?)

Elena, Jackson, and Viv



A Tunnel



Sisters in a Dome



Stepping Stones



We were on our way to the Rose Garden when something weird caught our collective eye. It looked like a giant bird's nest. Turns out it was a branch structure! There were kids weaving in and out, playing chase. We all LOVED IT!

The Diamond in the Rough





We smelled a few roses along the way to the Greenhouse, where there was a giant display of orchids and other tropical plants. They were all very beautiful and colorful. Afterwards, I broke out some bubbles and the girls had fun with them by the fountains.





We had a fabulous time. One thing I have to mention is that this place is VERY accessible--there were ramps EVERYWHERE. It was heaven, not having to worry about how E was going to handle tons of steps. Elena fell only once, while hiding and chasing in the Diamond in the Rough. She spent more time on her feet than Vivian, which is new; Viv was tired (no nap) and preferred to ride. I'd estimate Elena spent more than half of the time spent at the Gardens out of the stroller--which is no small feat, given the size of the Gardens and the fact that we were mostly in the sun.

It was a gorgeous day to be outside, and more to enjoy than I expected. We'll definitely do this again!