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!

Beach 2017

We had an awesome vacation this year at the Beach! We drove down a day early, to try to beat the weekend traffic. This means we had time to kill before we could get into the beach house, so we went mini-golfing.

In the past, this has been disastrous. Elena typically has a lot of trouble tripping over low obstacles, has had difficulty using a putter, and she wilts in the sweltering heat. This year, she rocked it! The only way we helped her was to carry/hand her a crutch as needed, or give her a hand for stability. She was patient and focused. All of us got a hole in one somewhere on the course!



We stayed in two different beach houses this year. One, on the beach, and the other two blocks away. The house with direct access is great for Elena, as she can get to the beach by herself. She has to be careful with her beach crutches going down stairs (typically I hold them, just to be safe, but she can do it without me) and needs to wear her water shoes so she doesn't burn her feet on the hot deep sand. She can go down to the beach without her crutches if the tide is high (or if she has a lot of energy to make it down to low tide). When we stayed in the house off the beach, we rented a golf cart. SO MUCH EASIER than trying to take the car, piggybacking, walking, or trying to use a wagon. If you are wondering if it's worth renting a golf cart, the answer is YES. I know it was only 1-2 blocks for us, but having the golf cart was the difference between a great vacation and one where transporting tired/wet/spastic/heavy kids (and equipment) would have made it much less enjoyable. Honestly, it made staying off the beach and on the beach basically equivalent.

Down the (public) beach access (when we stayed off the beach)

E and Viv playing in the surf. Most of the time she left her crutches just out of the surf or just walked from our chairs.

 

Vivian showing how small she is: "I can fit in a bucket"

We were joined by our friends the S family, who also have a 12-yr old girl. Elena and A had a lot to talk about, including "how mean our moms are". The winner of the "Meanest Mom in the World" award was me. Hmm.

Surfin' J!

Every day we spent a long time on the beach (except maybe one, for a sun break). We played with friends as we relaxed in the shade, or played in the sand, or swam in the water. Elena had a few firsts this year; she was able to walk past the surf, towing a boogie board, and ride in on a wave! Some days she had help, some days she did it on her own. Vivian has been pretty independent on the beach for a few years now--the only thing she has issues with are getting pinched by crabs and doesn't tolerate sea lice, which were around quite a bit this year.

 

Meanest Mom in the World towing kids upcurrent

Towing so they can "ride a wave at the same time". #tiredmom

Bocce!

Both kids love the "whoosh waves", where you just play in the deeper waves. If the mix of water depth (deep enough for Elena to be bouyant to stand), wave height (not too big), and current (not too strong) was just right, Elena could get out and play without help (with an adult close by in the water). Towing and throwing kids around in the waves is easier this year as my knee is almost recovered, but both Elena and Vivian are so much larger and heavier now, I'm not sure how much longer I can do it.

Jumpin' and whooshin'

Supervising (more hands-off this year!)

Strong Waves. Hands on.

Wave riding with Mom. This is my "hope we don't get rolled" face.

Beach Cousins! HOW CUTE!

Elena rode waves best on a raft, rather than a boogie board. She could carry a boogie board if the wind wasn't so hard, but she didn't like it when her legs would drag in shallow sand (and it took a long time to stand up as the waves hit). She couldn't carry the raft into the waves, but had a better time controlling it once she started riding.

Rafting

Rafting, Grandpa edition

Viv loved the inner tube. E, not so much.

What a great time with family and friends! It's so great to see how much progress the kids have made at the beach--especially Elena. Activities on sand, in water, were much more independent this year. The kids tolerated sun, heat, and the occasional sting very well. Aunt Kate won the Sorry! tournament AGAIN, with 12-yr old A coming in as the runner-up. The Best Beach find was a pufferfish, and best Beach Beverage was probably Jason's Mai Tais. Most Successful Surfer was Jason, and Vivian caught the most fish. Both Vivian, Elena, and cousin G made friends on the beach.

Huge thanks to the S family for joining us, and to Grandma and Grandpa for bringing the beach gear!

Family playing "surprise wave"

Recap: Swim Team

The Swim Team Season just wrapped up, but it officially begun at the tail end of May.

Our swim team is fantastic (this is our second year). The Head Coach Eric stresses improvement and sportsmanship/team spirit over anything else. He has Assistant Coaches (five of them, either high school or college age) who are wonderful, and a few Junior Coaches who are middle school age (more like helpers; this is a little odd, b/c E is the same age, but it's fine.) Practices while school is in session are in the evenings (we typically don't start practicing until school is over, it's too hard to fit in for us) and once summer starts, it's 8 am every weekday except Thursdays.

Elena and Vivian practice at the same time (for now). Viv practices with her age/skill group (mid/fast 8 year olds), and Elena practices with the inexperienced 8-and-unders. E would like to practice with her own age group, but she would absolutely clog up the lane (and could possibly get hurt) because every other swimmer in the crowded pool (all lanes) is 4x faster than she swims, and has more endurance. Elena knows this, and has a pretty good attitude about it. She acknowledges that she is well-challenged practicing with the youngest swimmers, and she has the opportunity to get more individual instruction time. It's hard on me sometimes b/c E isn't as independent without her shoes and braces, but honestly, she's really improved on her poolside mobility. For practice, she wears her water shoes (I like this type) and she can walk well with crutches and can take steps (while wet or dry) without. She enters the pool by the steps (with rail) and takes off her water shoes (leaves them there) and gets in to swim. Reverse on the way out. If she's cold, she needs assistance--but that's typically only at the beginning of the swim season. And, while she doesn't do it at practice, she can now jump in the pool safely from the side edge (one hand on a rail or ladder)!

Elena used to swim only two events; freestyle and backstroke. Her backstroke is seriously slow, and she doesn't love it. Her freestyle has really improved! She is stronger now, and can kick (it's inefficient for propulsion, but can keep her from sinking) and can take breaths on either side during her stroke. She used to curl her head around while pulling hard and fast--imagine her making a ) or ( with her body at every stroke--which ended up wasting a lot of energy, but now she is much straighter in the water. Her goal was to get her 50 free under 2 minutes (her home pool is a yard pool, so that's our reference measurement). She also wanted to get a legal breaststroke, which I thought might be hard if her feet "flip in" (she doesn't have great ankle strength/awareness to remedy this) but her feet/spasticity happen to work with breaststroke--so this goal was in reach.



Meets are on Wednesday nights, and the kids swim 2-4 events (Vivian usually swims more events b/c she swims on a relay team). I am allowed by her lane with the timers, as Elena can't get out on the side of the pool without a ladder (it's hard, but I pull her up under her arms so she is sitting on the edge of the pool. She then swings her legs out, and I help her stand and walk away). Everyone is supportive, and cheering, and congratulating each other on their swims. It's wonderful.

We were gone for 2 weeks on summer vacation, but this year we were in town for Champs. It's where all the teams in the league (all 3 divisions, so there are 18 teams) compete. Vivian dove for the first time (off the block, which is pretty scary for her) and Elena reached both of her goals, with her 50-yd conversion time of 1:58 and the best 50m breaststroke of her life!! Vivian's freestyle relay won a fancy ribbon! Elena also won a special award for Perseverance, which is new this year. Amid all the 18 teams, she won for outstanding achievement. It was awesome!

Welcome Summer!

This week Elena and Vivian had their last day of Fourth grade and Kindergarten, respectively.  Both are ready for summer!

Welcome Home for Summer!

This year has been HUGE for both kids.  Vivian loves school, and was totally ready for full school days.  Halfway through the year, I let her join an after school activity (tap dancing). She is very bright, is a voracious reader, is a quick math study and loves to play with friends. She has grown leaps and bounds socially. My only concern for her is that first grade will not be challenging (we are pursing options about that).

Elena had a banner year. Fourth grade means real grades, not just a number system for effort and mastery. Elena struggled with math at the beginning of the year. She studied and practiced hard, and with the help of her Math Coach, she ended up finishing this year with straight As!  THAT IS HUGE. She worked through lots of knee pain. She auditioned for and won the lead in the school musical and was AMAZING. We had more playdates than ever. She passed all her SOL tests--for the first time EVER! She has grown more responsible, more mature, more accountable, and more social.

Both girls are healthy and happy, enjoyed school--but very ready for a well-deserved break!  Every year I make them a chalk welcome on our driveway. They enjoyed running all over it. We've made our Summer Bucket List, and we're ready to start checking them off!

Chalk Work under fire

Water Fight

Water Fight

School, Summer, and Operation possibilities

School

So, right now Elena is having her Standard of Learning tests in school. For anyone not familiar with these test, this is a nationwide standardized test administered in public schools for grades 3 and up. the testing is controversial; the scores do not enter into the (elementary) student's record (they do in higher grades), but rather are used to assess how well the teachers/school are conveying material to students. In other words, it is a measure of the school, not the student. I have taken  few of these; the questions can be quite difficult, and some require more than one degree of inference. The tests are not mandatory, per se; parents can opt out their children--but what they may not know is when they do, the score for that student becomes a zero and lowers the school performance record.

These tests bring out the worst of anxieties in students, and Elena is a perfect example. I wrote about this during her third grade year; she was awash in nervousness and extremely disruptive. Tackling anxiety, quite simply, is going to be a problem for us (with Elena). While I don't look forward to testing, I do think it can be a way to measure if Elena is making progress dealing with her emotions.

Which…is debatable this year. Last night was the eve of her first (out of four) days of testing. She has accommodations in her IEP for extra testing time, but since the test is divided into two days (thursday and Friday) she cannot go over the weekend (or start early) if she needs even more extra time. Granted, she has the entire school day if she needs it (most kids are done in 3-4 hours, with breaks). She is, without a doubt, very articulate in her fears (once she calms down enough to discuss them) but she can be incredibly disruptive when given a lot of attention (our normal reaction is to disengage and let her calm down on her own--she doesn't like that b/c she feels we are ignoring her). After a huge meltdown the eve and morning of the test, I had low expectations for the day.

But, Elena surprised me. I received only positive feedback from her teachers regarding her test-taking. I'll call that a win.


Summer

I am trying to get plans in order for the summer. Currently I have spots reserved for both elena and Vivian and Camp Holiday Trails, but I haven't finished all the paperwork yet. I also applied for funding for Elena though the IFSP program (more on that later) an dI'm trying to wait to pay for certain summer things until I hear back regarding the funding. Dealing with heat, mobility, and size (vs. peers) are going to be issues for Elena this year I think. Heck, the heat is an issue for me right now--and I LOVE hot weather. I haven't been able to acclimate to the warm weather b/c I still have a difficult time navigating outdoor terrain. I'll get there.

In case anyone cares, here is a current picture of my "winky face" knee (almost 7 weeks post-op).

My left, your right. Still swollen and hates to bend.

New Op?

I'm currently researching epiphyseodesis (bilateral anterior distal femoral tethering) for Elena. Her main ortho recommends it, and E is scheduled for this at the end of September. In layman's terms, this is referred to as growth plate tethering. Basically they put some sort of splint/staple on either side of the distal femur (maybe proximal tibia?), kneecap side. This will temporarily halt Elena's bones from growing in the "front" of her legs (like mine, shown in the picture above), while allowing the back of her legs to continue to grow--essentially "growing out" of her crouch.

It's outpatient, quick recovery (comes home in some bandages only), slow changes, and temporary. The tethers come out in about a year or so and then she would continue growing as normal.

It seems like a perfect solution for a growing kids with CP. I'm sure it's not perfect, but it sure sounds good. I'll be digging up more information and posting what I find out.


SaHM experiment

My first attempt at making crutch covers! I'm not great with a sewing machine, but I am trying. These are a little snug--I'll probably perfect it with the next few attempts. Better than the hard plastic, and much cheaper than buying them (with no color choice).

Moi as hand model

Pink canvas and orange soft interior

Super Summer Recap

We have had a very busy summer.  It's been my first summer being home, and I have loved it.  These pictures are in semi-chronological order...except the Pony Show was in the Spring.  I was hoping to get permission to post a few cute closeup group shots, but I never had the chance to talk to all the kids' parents.  

Pony Show

(Did I already post this?) E and Viv were part of the Pony Show at Fairhunt Farm.  The girls were patient, but it was a very long wait; all the older riders went first, is that typical for a pony show?  Vivian was in the Lead Line/Hunter Pleasure category.  

Vivian riding

Blue Ribbon!

Elena was in the beginner Walk/Trot category.  She was excited, but not super excited to be on Teacup; she can be a feisty pony.  She had a leader and a side walker, both extremely helpful and kind girls.  

Smiling for the judges

Trot!

White Ribbon!

Blueberry Picking at Grelen

The family went picking at an absolutely gorgeous farm.  We harvested blueberries and black raspberries!  The farm is relatively small, and pretty accessible for Elena.

Vivian

Elena

What a view!

Maymont

We visited the Richmond Maymont Estate with some friends.  It is pretty expansive, so we brought Elena's wheelchair.  She used it about a third of the time--it was pretty hot and she was thankful for the ride (as was Vivian).

Some of the garden walkways are very steep and uneven

E at the Bear Pen

Simply Gorgeous

Fourth of July

We went for a walk the morning of the Fourth.

Fourth Cuties!

After resting, we went to the neighborhood pool party.  E and Viv had a great time swimming and playing with friends.  We stayed up for fireworks at a different friend's house.

Sparkler Girls

We got a double-dose of Fourth action the following day, where there was a weekend celebration in Crozet.  We hung out with our friends the Rs, enjoying dinner, a great parade, and community fireworks that were set off right outside their house.  Can't beat the view from their front porch!

E sparklers

Viv sparklers

Swimming at the Lake

We went to visit our friends the Andersons for a lake swim!  It was such a great time with good friends!  We did some kayaking too, but everyone preferred to swim b/c it was a hot day.

E gives Viv a ride

E and Avery

Snack Pile

Finally captured a Rainbow!

We make a pretty big seasonal "bucket list", and one of them was to see a rainbow.  Every time it rained during the day we would look for one, and we finally found one.

Rainbow Girls

Beautiful Afternoon

Overall we've spent our 'home' portion of summer swimming, exercising, stretching, playing with friends, and enjoying our community.  It's been fantastic!