End of Summer Wrap-Up

Time has flown by again. So here's the recap (I have a lot to write about since school started!).

Solar Eclipse
We all enjoyed the solar eclipse from our front porch. The kids had friends over, and they kept darting in and out, watching through our shields/solar glasses. My family loves astronomy, so this was a special treat!

Eclipsin'

First day of school! 

Vivian: 3rd Grade

Elena: 7th Grade

The beginning of school is always a rough transition...the girls felt like they were ready for school (they were) but not ready for the summer to end (we were pretty busy, in the best way--but maybe not enough lazy time?). More on that later.


Kayaking
We were lucky to spend a spur-of-the-moment kayaking day with our friends the N family! I snagged a spot for myself and the girls (Jason was out of town) on tandem kayaks (Viv went with TN). It was PERFECT. The weather was great, the kayak outfitters were so kind and helpful, there was transportation to/from the boat launch, and everyone had their fair share of paddling, swimming, wildlife watching, ropeswinging, getting stuck on rocks, and riding "rapids". Seriously it was perfect. We cannot wait to go again (the kids are begging to kayak again)--but there hasn't been enough rain.

Viv swam to our boat for a picture

Sherando Lake
The following day we joined our friends the S-R family during their annual camping weekend. It rained most of that weekend, so we declined camping (hence the kayaking) but managed to spend the nicest day of the weekend out there. The girls were excited to play with friends, especially in the (COLD) lake.

Makeshift rowboat is much harder than paddling a kayak

We also met a very nice gentleman, Bill, volunteering at the campgrounds, who helped our girls fish.
After everyone caught a fish, we finally headed home.

Clyde
As we were getting in the van on our way to school, I found this little guy in the grass right before the lawn mowers came through! We named him (her?) Clyde.

Box Turtle hatchling!

We've never seen a box turtle so tiny! We released him close to where we found him--but without the threat of giant cutting machines. Good luck buddy!

Rainy Family Day

The University presented a Family Day during the Film Festival. There were lots of events in which to participate, but the day was very rainy and it was crowded inside the building.

I wanted to take the kids especially for the instrument Petting Zoo--where kids could get up close and personal with different instruments and students that play them. Vivian tried almost every one, and got a sound out of everything she attempted except the trumpet. Elena didn't have as much luck; her mouth muscles and breath support are not as strong. She still enjoyed trying, and especially liked the cello.

Testing the Cello

Playing the Trombone!

Playing in the rain

A blog reader recently commented on what we do in rain, given Elena only has one pair of shoes, really. I found a pair of "overshoes" on amazon.com and they work beautifully in rain! There are several styles available, but the sizing is questionable. Elena wears a size 2.5 New Balance shoe, and the size overshoe we bought is a size "S/M". The overshoes are not high quality, and they are hard to get on/off but they do work well for our purposes. This has been the first time E could really stomp/splash in a puddle!

Her umbrella hat continues to be of good use also. The attachments on the head band are a little uncomfortable, so I think I"ll be making some changes by sewing on a sweatband of sorts.

Rain Ensemble

Another change of note: look at her crutch tips. These are called Flexy Foot crutch tips, and they are awesome! For some reason, Elena has been wearing through her regular crutch tips--about 3 pair per month. She's been growing, and I hadn't realized this wear and tear with her last pair of crutches, but it is what it is. These Flexy Foot crutch tips have lasted over a month, are still in great shape, and have helped ease her fatigue while getting around on crutches. They are expensive; I bought them for $35.00 per tip (they do have replaceable end caps, which I haven't had to buy yet) but right now, I think it's worth the cost.

Late Summer Round Up

I realized I didn't get around to posting these...


Albemarle Ciderworks

We had the chance to celebrate late summer with some friends at a local cidery. They have live folk music, and we enjoyed the early evening with a picnic dinner while the kids ran around the field (lots of other families were doing the same). We saw a child with what looked like a large leaf--and explored the nearby pond...which was full of giant lily pads!

Crazy on the dock

Lily Cape!

Lily Hat

Lily Umbrellas

Viv's Lily Nap

The kids loved them so much I let them bring the lily pads home and we kept them in the bathtub. They enjoyed bringing them to school to share!

Crabtree Falls

It was so beautiful outside, we tried to find a short hike. We drove through the mountains and found a short (but very steep!!) location. It had a trail, but sometimes you had to hike over serious rocks (harder for me than Elena). There were tons of stairs near the waterfall, but still very treacherous. We made it 2/3 of the way to the top, and decided that was enough.

Going Down

So happy

Snapshot

I wish I could bottle this time in my life and keep it forever.  I keep taking pictures but I wish I could preserve my feelings--things are going so well with us (all-around) that I am bursting with contentment.

Vivian is getting so big and independent.  She loves school, is trying to read, constantly makes us laugh.  She's hilariously expressive.  She just shines.

Elena is simply AMAZING these days.  She can now put on her shoes and braces by herself--about 80% of the time, without trouble.  It does take a while, so we put them on for her on school mornings.  Still--pretty huge.

E puts on her KiddieGaits--these new ones have demo covers

She is playing on the big playground at school--no small feat, as she needs to climb up a big ladder and stay safe among other kids and fall hazards--all down a huge grass hill.  She went on longer bike rides--today, she rode for 2 miles (there is a paved trail we like to bike) which is her furthest to date.  Her feet still come off the pedals when she gets too tired, but that will improve with practice, as will tackling hills.

2 mile bike ride!

Elena can carry things--like a preschool chair to sit on--to another room (with one hand on the wall most of the time).  Sometimes we let her bring her (glass and ceramic) dishes to the sink, and she hasn't dropped any yet!


Almost clearing the tire obstacles at PT!

Last week, E walked to and from the car to her Brownie meeting.  I got this video at the end of the meeting.  She looks great!!!



Hippotheraphy/riding lessons have started up again!  Elena has "graduated" to longer lessons, including horsemanship and learning to be an independent rider.  She is riding a new pony to the stable, Pinky.  She looks so grown-up here, oh my goodness.

Riding Pinky

E and Vivian wanted to come to my soccer game this afternoon--it was beautiful outside, but a long time to be without shade (especially after a long bike ride in the morning) and both girls stayed the whole game and played with friends.

E and O pass the ball

I tried to observe them when I could from the field--and once I saw E's crutches on the ground, and wondered where she was.  I made a few passes, a run, and then subbed out to see if she was okay--she was kicking the ball, by herself, on the (terribly patchy) grass field and had been for some time.  I rushed to get my phone, huffing and puffing, to try to catch that moment.

t's not much, but here it is:

THIS IS A BIG DEAL.  Not only does she have the confidence to try this among tons of strangers and other kids nearby, but she was successful.  She is getting better at her side-step to catch her balance--you don't necessarily see it here b/c the video is short and she does fall, but it's a pretty big improvement.  She falls and keeps trying.  This is after a long morning bike ride, and nearly 2 hours in the sun, playing with friends and watching the game.  I'm wicked proud of her.

After the game, Elena and I passed the ball back and forth to go shoot on the goal.  A bunch of other kids followed us.  We took turns being goalie, and each kid got to shoot (one kick at close range).  All the kids got to score a few, and all the keepers got to save a few.  I've never seen Elena be such a "normal" kid among strangers...it was a dream come true.

I'm so grateful to all who have helped us come this far--especially our main PT Theresa, West City Soccer, and her educators at school.  We wouldn't be at this moment without you.   

Fall

Well, it seems like I'm out of my emotional rut.  WHEW.

In a nutshell, I've had to come to terms that I need to have a near-complete shift in my way of thinking all things Elena.  Basically, I've viewed E's movement patterns in terms of achieving her most "normal" gait/balance/posture/stance possible through her daily life--including planning what types of therapies/surgeries/equipment we need to make progress possible.  At this point, we're more-or-less in a holding pattern, or plateau.  And that feeling is new to me.   It doesn't mean I won't try to challenge Elena or help her learn to use her body better--it means that I need to live more in the now instead of the future.   Appreciate now, and realize that this probably isn't the best she'll ever move--but it might be, and we need to show Elena that this is okay.

This is okay.  It's just a pretty big mental shift.

The good news is that Elena really likes to get 'in the mix'--with her classmates, with her family, outdoors, you name it.  She's outgoing and adventurous, which makes giving her new motor challenges easy.  Our Fall Bucket List gives us all some inspiration!

Here are some of the things we've checked off our list lately!

Leaf Pile!

Leaf Fight!

Leaf Attack!

Determination:  Washington Park Edition

Biking Weekend

Just a quick note--I took the girls out on a "bike ride" this weekend.

We've done this before, but this is the first time I've taken both kids out 1) where both kids were interested in pedaling a bike and 2) Elena's feet were NOT strapped to the pedals.  At PT, she's been working a bit (using the bike in this video) trying to put her feet down and back onto the pedals.  Theresa has also tipped the bike to try to encourage Elena to put her foot down to stop a fall.  E does it, but slowly--still this is all very good progress.

Today was the first time ever E's been on a bike outdoors without her feet strapped in, and the first time doing any kind of incline.  This one is very slight, but for Elena, it's definitely a challenge and I'm so very proud of her!

I also notice how Elena encourages Vivian--what a great big sis!  Up until this video, I couldn't get Vivian interested in actually pedaling a bike!

It's obvious to me that Elena needs a bigger bike frame.  Our PT says that kids with CP like Elena feel more comfortable on a bike where their legs stay more bent--but I think E's grown so much that this size bike is just too tiny.  She has been on larger bikes (just sitting on them, stationary) and I have to admit the fall from one of those bikes seems a bit daunting.  Elena has already fallen while riding a bike (twice, I believe), with her feet strapped in--and got right back up each time (with assistance).  It's our hope that with enough practice, E will learn when to keep her feet on the pedals and when to take them off to prevent a fall.  So far we are off to a slow--but very promising start!

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!

Flower Power

We heard from our friends the Teasters that there was a Tulip Festival just north of town. Today was a great day, and it was our only opportunity this weekend.

The Tulip Farm was small, but it was very beautiful.





So Pretty



Picking a bouquet




After picking, Viv goes exploring



"Tiptoe"-running through the tulips




Windmill!




Lemonade--"aaah!"