Wednesday, September 3, 2014


The verdict is in!  Doctor says Elena is suffering from tendinitis (left patella).  This isn't a huge surprise, but I'm glad she saw a doctor--I wanted to rule out anything more serious. do you fix E's tendinitis when her regular method of movement is constantly pulling on her left kneecap?  If she rests too much, she gets super stiff.  If she doesn't rest enough, she will just make her knee worse.  I have seen over the past few days her pain starts earlier and earlier in the day.

So, it's the "full court press" plan.

She got an ace bandage at the doctor (I had been using Coband at home, but we ran out) and I learned how to properly wrap her knee.  Elena loves the compression, she says it feels much better with it wrapped up. 

She'll be fitted for a neoprene knee brace.  It's still pretty hot outside here, so I'm not so sure how she will tolerate it.  We'll see once we get it.  I assume she is going to love the feel of it, given her experience with compression so far.

We discussed using knee immobilizers for a while at home.  We still have her old ones...she already enjoys her stander (it's her only comfort standing up) so I'm not sure if the immobilizers would be a better choice.  The doctor assures me she can walk in them...I disagree, but we could try it (especially if only on her left knee?).

The doc said she could benefit from more flexion at her ankle, to give her less stress on her knee when moving.  Meaning, a different brace than her KiddieGait (or no brace at all).  This will be trial and error at home--not to mention, how can we work on this when she is supposed to be resting?  Finding a right balance here is going to be a real challenge.

I had mentioned patella straps that runners use--they wear them right under their knees to prevent/alleviate tendinitis pain from running.  Doc says we could definitely try it.  Now I have to see if they make them small enough for Elena (my guess is she's the size of an average 6 year old).

General rest and stretching at home.  

I mentioned that we LOVE LOVE LOVE our Dynasplint brace.  E wears it every night, she says it feels good to wear it b/c it's the only brace that she can move in, and it's a great stretch.  E normally wears it on her right leg, b/c that's the leg that is tighter.  Doc gave us a prescription for another one, so she can have both legs stretched in a way she approves.  (I am really excited, b/c this brace is expensive.)

At school, the plan is for Elena to participate at a lower level of intensity for PE and recess.  When in the school, she must use her crutches to ambulate out of the classroom (frequently she'll just walk or touch the wall, or use just one crutch).  When sitting, they'll elevate her left knee. 

I guess we do this for 2 weeks, and reassess.  Heck, it will probably take that long to get her neoprene brace!  I think tendinitis is going to be more of a reoccurring phenomenon, given Elena's general method of walking.

Thank you for your comments, especially if you have CP and have experienced knee pain.  Your experience is very valuable to me!  If you can think of any activities that might help us, please comment.  I'd especially like advice of how to be active and not aggravate her knee pain (if that exists). 

Tuesday, September 2, 2014

Knee Pain

I'll get to our return to school experience when I can.

First, let's talk knees.

Elena has patella alta (high kneecap) and has for some time.  Her mobility and endurance took a big hit earlier this year, with school and homework and standardized testing.  Basically, lots of sitting from January to May this year.  We spent the summer getting back into stretching and different types of movement, gradually and in lots of different ways.  It was great.  E's range and mobility look good; her endurance still isn't as good as it used to be.

Last Friday something new happened.  Elena complained of pain--which she rarely ever does--around her left knee.  Left kneecap, to be precise.  And not just complaining--sometimes it's miserable crying, and hurts her to walk.  It's terrible.  Elena rates the pain a 4 on a scale of 1-10.   It seems to be localized on or right above her left kneecap.  My guess is it is related to patella alta, and on her left b/c that is her predominant weight-bearing side.  Basically, she carries most of her weight on her left leg, which is in a perpetual squat.

Her stance isn't new.  Most of the time, she's looked better than ever--more even weight bearing, standing tall, happy (this is all observed at home).  Except when she says it hurts, which is typically afternoons/evenings since Friday.

I have seen her at school and the only real difference is lots of running and more time on her left (without someone barking at her to try her right side, I guess?).  My guess is she has muscle soreness due to running in gym and on the playground, and it's taken a toll since school started (two weeks) and hopefully she'll heal up.  My fear is it's a CP-related muscle/tendon/bone problem, where there isn't a clear solution.

Elena has an appointment tomorrow with her orthopedic doctor.

Friday, August 15, 2014

Beach 2014 Recap

We went to Litchfield beach for our family vacation this year.  For two weeks, this time.  Spending that much time away from home sounds great, but given how tight Elena was last year after one week at the beach (it took us 5 weeks to recover), I knew we were going to have to find a way to keep her stretched as best as possible.

Since the beginning of summer, we've been diligent in her wearing her Dynasplint at night.  We started at a very low tension setting, and now we're at 8 (out of 10).  She normally wears it on her right leg at night, but occasionally we put it on her left.  Without a doubt, this brace has made the biggest difference in her range of motion since school ended.  We also brought her new Gecko Stander, with the goal of having her spend time in it daily.

As before, we took driving breaks every two hours and kept Elena's feet supported during the ride.  She was energetic and moved well at every stop.  We broke up the trip to the beach with a night's stay at our friends' house in NC--always good to see K&A!

I had made some Beach Crutches for the trip.  They are made out of PVC, and painted green (Elena's choice).  The most expensive part was the 22 degree angle slip fitting; this is close to the angle of the loft strand crutch.  I also looked for options to make a cuff, but I didn't find a substrate that was strong and flexible to fit her arm.  I do have three sets of extra loft strand crutches (a gift from the children's hospital that just moved to a new space), so I used the cuffs (and brought the rest of them in case the homemade beach set didn't work out).

Beach Crutches, front view

Beach Crutches, side view

Beach Crutches v. Walk Easy

The Beach Crutches didn't really work out; the main reason is the cuff post won't fit in far enough in the 22 degree slip fit, making the shaft of the cuff post too long (so the cuff is too close to her elbow).  I could trim it a little, but I didn't have a saw at the beach.  Elena also wanted her soft crutch covers on the beach crutches, which I did not allow b/c we'd never get out the sand.

Overall I think the crutches would have been a success with a few tweaks.  I'm happy we have a "spare set", as the pins in the crutches we did end up using have rust issues now, and still have sand in them (but not much).

Spare Crutch set worked well at the beach

We went to the beach every day except two.  We typically set out after lunch (except a morning bike ride) and stayed until dinnertime.  No one got a sunburn, and the girls had lots of fun playing in the surf and going deeper with grown-ups.

Viv gets a tow
Wave-jumping Elena

 When the kids weren't playing in the surf, they loved playing in a "beach pool".  (I spent a lot of time with a shovel each afternoon).

E waiting in her requested "heart shaped pool" for the tide to come in

Vivian cannonballing

Sand Fortress

One day, we went out on a sailboat.  Elena loved it.  We rode the boat to a small uninhabited island, where the shore was littered with hermit crabs and all kinds of shells.  We took a few back with us, most ended up escaping on the beach.  Big thanks to Captain Dave!

Elena loved riding up front
Viv preferred the stern
Mommy bow shot

We met up with some friends that come to this beach every year at the same time.  Their daughter is Viv's age, and they played together beautifully for the week.

Viv, Cha Cha, and I

Viv and Grandma

E and Nana

We had our annual Sorry! Championship--two of them, actually, since different family members came for different weeks.  This years Champions:  Week one, Aunt Kate, and Week 2, Elena!


We went to play mini golf; in years past, this has been unsuccessful because it was dreadfully hot and normally too crowded when the sun goes down.  We managed to play a few holes before a Pirate Show on an overcast day--Elena did GREAT maneuvering around the "pens" for each hole.  No trips!  AND Elena made a hole in one!


We didn't bring the trail-a-bike for the beach this year...because we just brought the kids' bikes instead!  Vivian lost the training wheels earlier this month, and she did a great job on the beach.  E is too big for her frame (as is Viv--they are nearly the same size), but the next size bike is too big for her.  Elena did a great job in sand--she really had to use her muscles to propel the bike.  Both girls had fun, even though E was a little upset that Vivian was far in front of her most of the time.

And they're off!

Fun morning on the beach!

Our favorite thing to do is just hang out on the beach, though.  We saw dolphins (on our bike ride!), I found a starfish, and the girls enjoyed digging for clams, being mermaids in the surf (E did get flipped over with a strong shallow wave--but only once, and I was right there), and playing in the sand. 

Wave Rider

Just us girls

"Mount DripCastle"

I had a hard time paring down pictures for this post...there's so many I just love.


Standing on a sandhill

Elena was expected to move mostly on her own.  She wasn't responsible for carrying anything but herself and her crutches while we were out there.  A lot of times she wanted a hand (sometimes she got one, especially if very tired or in rough water) but most of the time she walked alone.  Her gait looked better (of course) when using crutches.  The hardest part was always walking back to the beach access pier, with her crutches (she'd be tired, maybe a little cold, and not wanting to do stairs).

Walking, side view

Right foot down

Left foot down

Most of the time she fell in the water or sand right after a picture like this.  But still, she looked better than last year walking on sand, especially if she took her time and thought about it.  And now they can run into the surf together.

Surf Sisters

So Happy

And yes, there was a lot of this.  

Yes, my back hurts

Right knee collapse--but still walking (so far, always without pain)

Wagon ride home (one block away)

We had the best time.  This beach is so family friendly, the access is close (the handicap access is about four blocks down), the house has everything we need, the water is warm, and the company can't be beat.  Thanks always to our whole family for making this trip possible (and so much fun!), and to Dad and Kate for snapping most of these pictures, and for taking our big gear in their truck.

And how long did it take E to recover from so much beach time?  NONE.  We used the stander probably 10 days out of 14, the dynasplint every night, our usual stretches and a few massages in there (for both E and Viv).   Bonus!

Wednesday, August 6, 2014

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
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.

What a view!


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!