Second Grade Field Trip

I took the day off work and became a chaperone for Elena's second grade field trip.  It started at the Safari Park (I had never been, but I asked about the terrain in advance), which was about 90 minute's drive from school.

The school rented a charter bus (with a bathroom--essential, and TV screens--this kids loved them) while the parents carpooled.  Elena had a special support for her feet so they didn't dangle while she sat in the bus seat.  She said she loved the bus.

I brought her wheelchair b/c the Safari park huge.  There is a paved animal area, where there were creatures of all types in good sized pens.  Monkeys, tortoises, farm animals, tigers, cheetahs, flamingos, servals, kangaroos--just all sorts of animals!  Elena decided to go on foot.  She wasn't as fast as the rest of her classmates, but kids were all over the place (in groups) and everyone was enjoying themselves.

E and Mom are Llamas

The second part of the Safari park was on a tractor ride.  Each person got a bucket of feed, and we could feed animals that approached us.  They were all pretty easy going (still dangerous due to size/teeth/horns/antlers) and we all loved it!  We are absolutely coming back so Jason and Vivian can have this experience!

E feeds a friendly Bison

Ostrich eggs are HUGE!

After the ride we all ate lunch and headed to our next destination--Natural Bridge.

E points out the attraction

Gorgeous

Elena took a shuttle bus to the bottom of the Natural Bridge, meeting her classmates that had descended a lot of rocky steps.  Everyone then walked up to the Monacan Indian village display* and we had a fascinating discussion featuring Monacan Indians, and natural resources.  During the discussion, I offered my knee as a place for Elena to rest--she was very very tired, and looked like she might fall over (it was also pretty warm all day).  She wanted to walk the way back herself, but we were far behind and she looked unstable.  I gave her a piggyback for part of the way back--I thought she was going to fall asleep on me!

When we got back to the Natural Bridge, she walked again--the rest of the way to the shuttle bus.

Natural Wonders

I'm so proud of E.  She had lots of energy, her stamina was great, and she didn't have any bad falls.  Overall she stayed close to her group of peers, lagging just a teeny bit behind.  Her class is pretty awesome.  I got a great picture of them under the bridge--a great group of kids, all of them.

*One of the tour guides stopped me as I was leaving the village display to tell me "he had crutches just like Elena" when he was young.  He is 42, and has arthritis.

Ortho Roundup: Let's Talk About Hips

Elena had her regular checkup with her orthopaedic doctor a few weeks ago.  Overall he was pleased with her progress.  He thinks that her flexibility is decent (maybe the night splints are helping?), her range of motion is pretty good, and he is glad she is an active, happy kid.

He looked at her spine, and quickly looked at her arm strength/core (hold arms straight and out, several directions, in a sitting position--check; hold arms straight above head in streamline position--almost check; and he unsuccessfully tried to tip her over--check) and was pleased.

Then we got into a discussion about hips.  I brought it up--basically, I use these visits to try to prepare myself for any future surgeries/interventions as best I can.  I don't like the "bad surprise", when you show up at the ortho and all of the sudden you've been told that your kid needs XYZ surgery or else something terrible is going to happen.  So, I'd rather hear WAY in advance, in order to try to prepare myself and Elena.

I already knew that she was at higher risk for scoliosis (she's fine so far).  I also know that she may have hip issues due to her spasticity/crouch.  She hadn't had a hip x-ray since age three (before her SDR).  So, they decided it was about time she got one.

I don't know a lot about hips, but here goes...

At E's 3rd year X-ray, she didn't have much of an established hip ball-and-socket joint.  As kids grow and bear weight (and walk), the femur head angles itself into position into the hip, and carves out a socket (something like that).  Due to E's delayed mobility, her hip at age 3 didn't look much like a ball-and-socket.  Kids with SDCP like Elena (knees caving in, tibial and femoral anteversion) don't develop the right femur head angle and the socket tends to be shallow (imagine what W-sitting does to a hip joint).  This results in something called coxa valga.

http://en.wikipedia.org/wiki/Hip

If the socket is shallow enough and the spasticity tight enough, the femur head can wear away cartilage at the joint and even come out (subluxation).  This can be, but is not always, painful.  The most common surgical fix for this is a hip osteotomy (which wasn't as terrible as I had thought it was) where they remove a small triangular piece from the stem of the femur head and make the angle of the femur head more acute so it fits/stays better in the socket.  This is better for stability, but as with any surgery, there is a net increase in weakness due to cutting through the tissue and bone.

It was my understanding that kids who move like Elena (pretty well, but not great) didn't get hip subluxation and didn't need the hip osteotomy.  That is not true.  We'll have to wait and see if Elena complains of hip or leg pain and then see what's going on (at this time, she does not have pain).  The best thing we can do is try to keep her posture as close to normal as possible and keep her active (bearing weight as close to properly as possible).  I think we are doing that.

I asked if there was the possibility at this point in her life (a small age 8) that with proper exercise/training, we could deepen her hip socket over time.  He said that is unlikely.  Overall he thinks her hips look better than he had originally expected--she may not need any intervention at all.  That sure would be nice, right?

He did say it was almost a given that with her hip joint the way it is, she would develop early arthritis of the hip (early being ~50 years of age).  That made me sad...but I can't do anything about it.

The good news is E is moving well and still making gains.  Her doctor doesn't want to surgically intervene for fear of making things worse.  Wait and see is the plan, and right now, that sounds pretty sweet.

Elena's 8th Birthday--The Octothon!

Elena chose the theme "sports" as her birthday party this year.  I morphed this into "games"--so we played 8 silly games, "minute-to-win-it" style.  We decided to invite her entire 2nd grade class, as well as a few neighbors.  I expected a packed house.

I am waiting to post pictures until/if I have permission from parents, so a description will have to do for now.

E's party guests arrived, and she asked them to pick an egg from the bowl.  Inside was the color pink, purple, or orange (Elena's favorite colors)--corresponding to the Team color.  Each kid wore a hat for their color team.  Each team would earn points for each game.  The winning team got a special choice at the end of the party.

1--Dizzy Izzy
The weather wasn't cooperating, but I decided to try anyway.  This game is a relay race, where each person runs to a bat, then spins around it 8 times with one end of the bat on the ground and their forehead on the other end of the bat.  Then they run back (not necessarily in a straight line) to tag their teammate to take their turn.  First team finished wins.  For this game, E had to run around the bat instead of putting her forehead on it.  No biggie.

2--Kid Outburst
I thought of 10 items in a category, and each team had one minute to try to guess all ten items.  Categories were things like "pizza toppings", "types of soda", "vehicles", stuff like that.

3.  Rump Shaker
I made LOTS of boxes out of cardboard, and used duct tape to secure the box on each kids' backside.  Inside each box were 4 ping pong balls, labeled with the corresponding team color.  The kids had one minute to try to dance/shake/jump their balls out of the box.  Each team got one point for each ball that ended up on the floor.

4.  Nuts and Bolts
I had three trays with lots of nuts and bolts of different sizes (they all had a match).  The teams had one minute to match them all.

5.  Can Sorting
I put increasing amounts of money (coins) in 8 different (empty) soda cans.  Each team had to sort them  by value according to weight.  This was probably their least favorite game--it was pretty difficult.

6.  Volcano
Each kid got a roll of mentos.  Working as a team, they had to drop a mento into an open bottle of diet coke sitting on the ground.  Kids had to stand up, and drop the mento from head-level.  As time went on, they could get progressively closer to the bottle, but could also end up with a facefull of diet coke.

7.  Grapevine
I had strung grapes on one end of a thin string, and attached them to a long PVC pipe using duct tape.  With the team lined up in a row, I positioned the string of for each grape so that it could reach the mouth of each kid while they were standing in place.  Each kid had to blow their grape (pendulum-style) and then catch it in their mouths.

8.  Spaghetti relay
Each kid got a piece of spaghetti.  They had to walk to a table, maneuver a piece of rigatoni onto their spaghetti, and walk back to tag their teammate--all without using their hands.  This proved pretty difficult for everyone, but there were lots of laughs and helping by the adults at the table.

The winner of the Octothon was Elena's team (Team Orange) by ONE POINT!  The winning team's reward was they got to pick one of the day's games for the grown-ups at the party to play.  Of course they picked Rump Shaker, so all us adults had to do it!

Thanks to all the kids--great sports, all of them--and especially to both sets of E's grandparents who helped with the party.  And a big thank-you to all the grown-ups who played the final game!

My dearest Elena,

I can't believe you are eight years old now!  You are a wonderful big sister, a good student at school, and a great friend.  Even when times are challenging, you have the maturity to think things through, talk out problems, and try a fresh approach.  You are diligent with your therapies and have more independence than ever.  We love your funny stories and silly ideas.  Vivian loves you to pieces.  You are the hardest working kid I know.
You've had a few Disability Awakenings this past year, which I'm sure can be an unhappy reality check.  Even so, you have a strong sense of self, something of which your Daddy and I are really proud.  You are an amazing, intelligent, thoughtful, and inspiring girl.  We love you always, in all ways.  I'm so thankful I get to be your mom.

Happiest of birthdays to you!

Blue Ridge Kid's Marathon

A while back, our friends The Andersons mentioned there was a Kid's marathon--where the kids have from January 1-April 19th to log 25.2 miles.  The last mile would be run on the marathon course with the rest of the runners.

That day was today--a beautiful but windy cool morning.  The kids were excited!  The staff let us park closely.  As far as I could tell, Elena and Avery were the only motor-impaired kids running this final mile.

Pre-race

Team Doodle

Running friends

We waited in line for at least 20 minutes, the kids trying to stay warm in the cold breeze.  Once we started running, everyone warmed up quickly.

And we're off!

I thought E would do her usual run-and-stop.  SHE DIDN'T.  Maybe it was the thrill of the race, maybe it's her increased endurance--but she never stopped.  She took a few walk breaks, but really, not too many.

E and Viv stayed together for most of the mile

Elena wanted water a little over halfway; I told her with real races, they have water stations.  I told her she was supposed to grab a cup of water, on the run--take a drink and throw the rest.  We had a few mock-water practices--when the moment came, she was thrilled to do it like a real marathoner!

Didn't skip a beat--that's her cup after she's done (on the left)

Jason and Viv started pulling away near the end of the mile.  We were all cheering for each other!

E can see the finish!

Elena's mile race before this was the Jingle Bell Run; it took her 28 minutes, which was her typical pace pre-marathon training.

Elena finished her mile in 17 minutes, 30 seconds (new personal record!!)  Vivian finished in ~15 minutes.  Both girls were tired and very proud of themselves!!

We met up with Avery and her family after the race--she got her own personal best time too!  Then it was off for brunch--in their new medals!

Runners!

Thanks to tbe Blue Ridge Marathon staff--especially for the golf cart ride back to our car, and a HUGE thank you to Mr. Keith (our Feldenkrais practitioner) for coming to cheer us on!  It was a beautiful day, with wonderful people, and a fun event!  

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.   

Night Splint: Update with Pictures

Things are crazy busy here.  In the past month, we've had sickness, health, travel, sleepovers, and spring break, not always in that order.

Here are pictures of the splints on E's legs:

Splints and a smile

close up

These splints are basically polyester backing over some semi-flexible metal rods, secured around her legs (knees) with three fat velcro bands.  They are relatively easy to put on.  Elena has never tried to take them off herself.  We have other types of braces--her DynaSplint and her night brace (basically an open AFO) but her night brace is now too small (we had it made years ago, and couldn't wear it due to our nighttime issues) and she prefers these splints to the DynaSplint (although I'd prefer to switch to them b/c she can bend a knee if necessary).  Anyway--

Side view progression:

First Day

Current

Rear View:

First Day

Current

When I take pictures I do not give Elena any cues on how to stand, lean, etc.  I take pictures almost every morning, and I have noticed a shift in standing (static position)--her position is taller and more upright.  Her heels are down more, but I think that is just due to standing practice, not due to the splints.

As far as other changes, I have noticed two:  she is slightly easier to stretch during our nightly hamstring stretches, and when walking barefoot she does not fall as often.  I need to clarify that when she walks barefoot, she is on her toes, with her knees bent.  I think of this as "walking while falling", if there isn't a place for her to run into to stop.  Sometimes she only takes a few steps and gets frustrated when she falls--this used to happen all the time.  I can say with conviction this happens MUCH less in the past few weeks, an observation I just realized.

On the negative side, Elena does not sleep through the night while wearing the splints.  She typically wakes up 2-5 hours in, calls for me, and I remove them.  This means both of us wake up at least once per night (I am a very light sleeper).  I don't like to interrupt her sleep, but the interruption is quick and doesn't seem to bother her.  I feel that if she goes to sleep while wearing the splints (which she does well), she'll eventually get used to wearing them for longer periods of time.  So far that hasn't really happened, but we'll wait and see.