Sunday, August 2, 2015

Beach 2015

This post is overdue...everything takes longer these days!

We headed out over the 4th of July to Litchfield, NC for a beach vacation. I knew this year would be different; Elena hasn't been moving all that well, and neither have I. The week before the beach I had another knee surgery (closed manipulation; they bent my knee all the way under anesthesia), which helped immensely, but riding waves was a non-starter. Sand was harder for me than for Elena, and I managed to do some shin-deep walking in the waves to get knee exercise. In general, Elena and I had the same territory, but she was faster than me.

Everyone had a great time. Great company, wonderful location, gorgeous weather.

So Happy

There were some dangers, though. There had been many shark sightings (more than previous years), and despite the fact that sharks are always around, we didn't spend much time in (deep) water. I also blame my knee, as I wasn't able to venture into the waves to supervise the kids. Still, Elena and Vivian spent a lot of time playing in the shallows. I could wade with them or watch from up higher on the beach. While I was in the shade, I saw Elena get up and walk to our beach chairs-with a pretty mean face.

Determined face and terrible gait

She doesn't typically move like that. I knew something was wrong. She sat in the chair, and started to cry for me--obviously in distress. Turns out she was stung by a good-sized sea nettle (I got a picture of it in case we needed an ID) while she was on her knees in the water.

The girl who saved herself

This is a pretty big deal--in years past, E would have sat there, with the jellyfish still stinging her, until I arrived. In spite of her crouch and difficulty moving, she removed herself from danger. That is HUGE! I was sorry she was stung, but so so proud of her for taking care of herself. We saw to her sting, and within an hour or two she was back playing--albeit with a pretty red and tender leg.

Beach combing

We brought E's tri-foot "rugged" crutches again this year. These are our "spare pair", ones we don't bring indoors. They still had sand from last year, and some rust in places. I'm happy to have these (they were donated to us) so we don't ruin E's main pair of crutches. In general, E used these to navigate to and from the beach house, and if she was going to walk to a nearby shell patch. Otherwise, she walked without them (not well) or was on her knees in the surf.

Cast fishing

Shell hunting

Shell tiara

The wildlife was better than ever--we saw (and held!) sharks, fish, sea urchins, starfish, and snails. We saw dolphins, a stingray, crabs, pelicans and jellyfish. We enjoyed fireworks at night on the beach. We dug holes, rolled in the waves, and enjoyed games and relaxation in the beach house.

Walking in the surf


Viv in her "tiny pool" before high tide

Tidepool hopping

Viv caught her own waves!

Blacktip Shark!

The beach time was very different for me this year. I was unable to carry much of anything, since simply walking in the sand was extremely difficult for me. I continue to be extremely thankful for the help and support of our family, making this trip possible and enjoyable for everyone. I was really proud of Elena for getting herself to and from the beach house!

Wave Play

Sand Temple

Beach Sunrise

Thanks to a great crowd this year at the beach--we loved the location, the family meals, watching the USWNT win the World Cup, playing games, and our annual beach puzzle. We loved watching baby G enjoy the beach for the first time! And more than anything, thanks for the wonderful company!

Friday, June 12, 2015

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

Left Out

It happens.

Unfortunately for Elena, she has experienced two in-your-face episodes in the last month. The first was a birthday party at our local pool; E was there swimming, basically walking in on the party prep and realized she wasn't invited. Jason packed them up and left before the party started. Hearing "I guess I forgot to invite you" was a crushing blow for E. She spent a lot of the day crying, despite my best efforts.

I know it happens. I know this family, and they are nice people. I know everyone can't be invited to every party. And I know that the birthday girl and Elena are not particularly close. The sting was very painful though, and as a parent, it is hard to see your child hurt.

And I know it's not unique to Elena. I feel like it will happen more for her--but I could be wrong.

The second, she was invited to a birthday party with lots of classmates.  Another pool party, which for Elena is not a great fit. I decided not to bring her swim vest, as I thought it would alienate her even more. The water was ice cold, and kids weren't in there very long. Elena stayed in the shallows with one or two other people, and the rest of the kids were in and out of the deep end.

During pizza time, I carried E's pizza and silently followed her to where she decided to sit. Most of the party were sitting at a picnic table, laughing and eating. Elena walked to the corner of the table and asked to sit where there were a pile of towels on the table. Two girls near her end turned to acknowledge her, looked at her, and then turned their backs to her and ignored her. Didn't move anything so she could sit. Elena looked at their backs for a second, put her head down, and walked away.


I have never seen this before. It was so...mean. I just followed her lead--she walked to a chair where another girl was sitting and asked to sit with her. I put her pizza down and walked to a table where a few parents were sitting (yes, they saw the whole thing). Soon, E and the other girl were eating and laughing. I sat in silence. So did the other parents, for a while. Then one said "maybe the girls didn't know who those things belonged to", which I snapped wasn't the case (I tried not to be negative, but I couldn't help it). I took a deep breath and made small talk.

Look, I know it takes effort to include Elena in something like a pool party. I can see that not coming naturally to some of these other kids. I actually think it's a big deal for someone to decide to change their manner of playing so Elena can take part, or be part of the group--it's not instinctive. But it took actual effort to be mean to her in this case. And that just plain sucks, and it's the first time I've actually witnessed it.

I got up to move the car (it was down the hill, and I didn't realize there was a handicapped space closer to the pool--and with my knee, it was going to take a while) in case Elena wanted to leave the party early (I know I did). When I got back, the kids were eating ice cream, at one table, including E (there were a few chairs pulled up to the table) and they were laughing and happy.  I don't know who orchestrated it, probably the other grown ups. We ended up staying late.

Later that day, I had a discussion about friendship with Elena. Did she think the girls at the pizza table were treating her like a friend? Did she consider them friends? Sometimes I worry that she doesn't know what a friendship should feel like. I guess this is a process that a lot of kids go through, which is comforting in its typicality but burns all the same. Elena had some great insight during our conversation, where she told me the girls who were mean were not in her class, so she does not know them as well and does not hang out with them at school. I guess that explains a little. There was also an older girl (sibling?) who obviously was someone to impress--the social hierarchy was very easy to witness developing, for anyone who remotely cares about that sort of thing. Some kids at this age care a lot, some not at all. It doesn't bother Elena much, which is to our advantage. For now, anyway.

Pre-Summer Recap, Part II

Renaissance Faire

The kids have been enjoying the movie "A Knight's Tale", so I decided to see if there were any festivals around--and we found one, less than an hour's drive! The reviews stated it was a family friendly event with affordable admission. I emailed the festival director and asked about the terrain for Elena and myself; they said it was in a large field, on a hill (they weren't kidding) but they gave us directions and offered a golf cart ride back to the car if we needed it (we didn't).

Welcome Lords and Ladies!
We had such a great time! The girls saw jousting (with a lady knight, very empowering!), jugglers, entertainers, singers, beautiful crafts, a blacksmith, knife/axe throwers, archers, and lots and lots of people in costumes.

Cheering on Lady Anne at the Queen's Joust
One of the reviews I read mentioned how the costumed individuals are very welcoming to children--were they right! The girls were repeatedly bowed to, addressed as "my lady", and asked questions like "are you a princess?" and things like that. They were tickled.

Talking to a Lady before Court
To my surprise, both kids loved the Queen's Court. There were seats in the shade (the day was HOT! I can't imagine how hot the people were in mail and armor) and they had front-row seats to watch people bring gifts, read poetry, make jokes and otherwise entertain the Queen.

Girls being offered a front-row seat at Court
 The girls also were knighted by the Queen! They were cheered by the Court (Huzzah!) and received a certificate. Both girls brought their certificate to school for show-and-share.

Lady Vivian leaving Her Grace's Court
The Knighting of Lady Vivian
We had an awesome time. The Ladies were tired after our day at the Faire. If you are around Lake Anna Winery, you should definitely cheek it out!

Bonus Moi

Quest Fest

 There is an end-of-the-year showcase at school where students' prominent works are on display. I had both Elena and Vivian take me on a tour of the school and show me their work. My favorites are shown below.

E with her word portrait and sock puppet

Homemade Circuit Board Quiz!

Vivian with her "Seasons"
 One thing that continually amazes me is the variety of work Elena does in the fourth grade, and how well integrated she is with her classmates. School helps put her on peer level better than anything else right now. It's wonderful to see.

Climbing Study

Elena was asked to take part in a climbing study. The objective is to see if rock climbing can be used as an effective PT tool. Elena is monitored via motion-capture technology on her first and last sessions; in-between, she climbs and hopefully improves her motion. We can come as often as we like. Right now, it's once a week.

E getting set up by Mr. John and Mr. Eric

Elena has been climbing before, and typically is willing to try anything--even if it's scary. She doesn't seem to be afraid, even after losing her footing--she trusts Mr. Eric on belay.

Mr. John giving instruction
E taking instruction

 First they had Elena climb as she pleased, while they got the idea of her comfort level and movement abilities. The second time, John gave her instructions of where to place her feet and hands, trying to stretch her range or use right vs. left extremities. In general, Elena leads with her left leg. Her hands are not particularly strong, and she relies on her left leg for strength and stability (no surprises here). Important to note, this is the first time she has ever used a half-harness (waist only); every other rock climbing experience (three, I think) she has been in a full-body harness (I wasn't sure if she could right herself if she lost her footing--now I know she can).

We've been a few times--Elena enjoys it much more without the time taken to attach all the motion sensors. I can see definitely improvement in hand strength, using her right side, and her weight distribution on the decent (trying to get her feet flat on the wall, while leaning back in an attempt to repel down the climbing face). Vivian is allowed to try too, although she is more of a one-and-done climber.

I'm looking forward to the report at the end of the summer!

Wednesday, June 10, 2015

Pre-Summer Recap, Part I

We've had a lot going on here.  Kids are busy; the biggest difference is my difficulty with my knee, which is painful and time/energy consuming. I just looked back at the blog, and my goodness there's a lot missing! I'll try to put it back in order.

A New Arrival

The girls finally got to meet their new baby cousin!  Vivian has never met a baby this young. Elena loves babies, and couldn't get enough of G.

Viv attempting to hold G
E holding G

Fun Run

Every year there is a fun run for our school. It is very hilly, and typically on a hot day. This year it was sweltering hot. Elena and Vivian both wanted to run--Viv did the 50 and 100 yard dash, and Elena ran the half mile.
Run Vivian!
The half mile/mile course is no joke. I had a rough time getting around the 'flat' parts, given my injured knee. I knew Elena could handle the terrain, but I wasn't sure she could finish the course given the heat and crouch issues. She wanted to run, and so it was. She started with her classmates--she was left behind in all of 10 seconds. Jason was with her, in case she got too tired or fell in a ditch (she didn't).

Most kids finished the course by the time she was 1/4 through. Vivian and I kept cheering. As she passed the other parents hanging out by the course, they started cheering too.

And then something happened. I couldn't really see it, b/c it was out of my range-but the kids who had finished (and their siblings and friends and parents) started to congregate near the finish. I finally walked to the finish line and saw all these people, mostly Elena's schoolmates, walking with her, cheering her on, clapping the whole way to the end. It was beautiful.

Strong Finish!

Strawberry Season!

We went picking this year-Elena did a great job with one crutch. We even had enough to make jam!

Sisters at the Orchard
A Fine Specimen

Later on the kids hosed off in the sprinkler. A great way to usher in the season!

Sprinkler Time

Thursday, May 14, 2015

School, Summer, and Operation possibilities


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.


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