Friday, December 19, 2014

New Waiver Business

I decided to apply for a new Medicaid waiver.  I love our current one (ECDC waiver); last year I called a UCP branch (not the one in town, one in a major city--Richmond) and asked if there was anything I should be thinking about for the future, as E grows older.  The answer was yes, the Developmental Disability (DD) waiver.  Basically, it's like ECDC on steroids.

You have to qualify in at least two different categories to apply for the waiver.  I could think of four.  So, I called up the office and asked what I needed to do.  The first thing was to get a psychological evaluation to prove Elena isn't intellectually disabled.  No problem, right?

WRONG.  First of all, I only had 45 calendar days to get the report in.  I needed the report before I could get a screening.  I called the school psychologist--she took 5 days to get back to me, and then said they didn't do that (they don't--unless you already have a psych eval on file as a part of your kids' IEP, they won't do it).  I called twenty psychologists in town; most of them didn't do this.  Oh, and by the way, psychological evaluations for exclusion are never covered by insurance.  For the psychologists that would do the screening, prices were $350 and up.

Well, I got one--but I couldn't get one before the screening appointment, which I had made at the Richmond office on the same day as two other appointments for E (I didn't want to pull E out of school more than once).  I was allowed to do the screening in good faith that E wouldn't be labeled intellectually disabled (excludes from the DD waiver).

The screening went well--E actually qualified in five out of six categories for the waiver.

We had E's psych eval--it's basically the WISC IQ test and a report.  I faxed it over, and now we're just going through the hoops to get on the DD waiver wait list.  Which is about 5 years long.  I figure that's okay, maybe we'll have it when she gets to middle/high school.

I got a call from the psychologist, Dr. Patrick.  He said if I was willing, would I be interested in coming in and talking about Elena's test results; he said he might have some tricks that would help us deal with frustrations as E gets older.  ARE YOU KIDDING?  Who wouldn't?

That appointment was this week.  In a nutshell, they said that Elena is basically a verbal genius.  And that given her language skills are so strong, one would assume that other skills are strong (true assumption).  UNTRUE in real life.  Her other scores--particularly spatial relations, problem solving, ordering--are on the low end of average.  (I'll write the official psych categories once I find the report again).  This IQ score spread between her verbal and other categories--is seen in less than a half of a percent in her peer population.

But it's relatively common in spastic diplegics.

The difference in these skills indicates Elena has a non verbal learning disability.  I don't know much about this, but schools do; I'll be giving them this report addendum once I get it.  The psychologists believe that once a few NVLD tricks are employed, E will make rapid progress in her deficient areas.

I said that was great…but what can I do at home?  I gave some examples, such as:

1) Brushing teeth. For a very long while, she would fight us all the time b/c she insisted on squeezing the tube from the middle instead from the bottom.  I showed her tons of time, she just would go back to her way and scream that there wasn't any toothpaste.  For MONTHS.
Answer:  Are you normally trying to get somewhere during this teeth brushing event?  Yes (school).  They said I can't be a teacher and a time manager.  I have to pick one.  If I'm teaching her, time doesn't matter, and we do it calmly and work it out.  If I'm a time manager--just help her with the toothpaste, b/c she won't get the lesson.
2) Brushing hair.  Elena loves her long blond hair, but she can't brush it well.  I've taught her how to start at the bottom, move up, and then brush down from the top, as well as from the back, where you hold the brush behind you and go down from there.  Both psychologists said at the same time "she doesn't know where the brush is" in relation to her head.  Makes sense, b/c she basically tangles everything up in the back.  Again, the solution (besides cutting her hair) is to sit down, teach her, mirror each other, etc. so she can learn a different way.
3) Time management.  I tell her she has 40 minutes to do four things (get dressed, brush teeth, come downstairs, brush hair).  We are always running late, we are always waiting for her.  She knows how to do these things (minus the hair), she knows how to tell time, she knows she takes longer but still won't get started and it's always a struggle.  Again, the psychs say in unison, "tell her to do one thing.  Then when that's done, tell her to do another one thing."

This is all pretty new around here, so I'm reading up on NVLD and dividing my time between teacher and time manager.  That was a good piece of advice, as I have seen the frustration level decrease since that change.

Hopefully school will help…and there's a chance that she'll receive OT, which would be great.  If not, we may need to seek OT privately.

Surgical Consultation Recap (ongoing)

Things have been busy here.  Overall, things are wonderful, with the exception of Elena's gait/crouch.  So, we've had a few appointments to gather information.  Warning, it's long.

I made an appointment with another orthopedist, recommended from a friend.  So, we took the day off school and headed to Richmond to see Dr. Chester Sharps. Long story short; I like him, he's very personable.  Our meeting got pushed late (we had 2 other appointments that day, and we were the last appointment of his day), and while I wasn't upset at him, my patience had run out and I didn't present myself the way I had intended.  Basically, I wanted to say to him "So, what do you think?" and instead, all my frustrations with her current doctor came pouring out, and then we talked options.  Here's the options recap.

Elena has 9 problem areas (if you are going to address "all"), assuming her hips were fine (her last x-ray indicated they were, I found out later that x-ray isn't current enough).  From the hips down, they are: 1) hip flexor (iliopsoas) tightness/contracture, 2) adductor tightness (not terrible, though), 3) hamstring contracture (multiple, forgot the actual names), 4) patella alta (high kneecap, both sides), 5) knee capsule contracture (don't remember the name; basically her knee is caught in a contracture so it can't straighten), 6) femoral and 7) tibial anteversion, 8) severe pronation mid foot (rocker foot), and 9) bunion (initial formation of) on her left toe.

I was a little shocked at the list.  That wasn't really my question, so I had him remove any area from the list that wasn't really a problem with her movement.  I want to improve her "ease of movement", not have her just stand straight.  He removed any osteotomies from the list, stating that her anteversion didn't seem to affect the way she moved very much.  I asked if it would get worse, he didn't seem to think so.

We both agreed that the best course of action to protect her joints and have her move better is to get out of the crouch.  To do that, Sharps stated that one needs to approach it from two points:  hips and hamstrings.  If you lengthen hamstrings, you still have hip contractures, so you bend over at the hips.  If you lengthen hips, you can straighten from the thighs-up but are still bent at the knee.  This sound logical to me, but most docs don't touch iliopsoas b/c I guess they figure they are easier to stretch/small to operate on?  Not sure.  Sharps also noted that b/c E's knee is in a state where it can't be straightened, he'd do a knee capsulectomy (cutting the knee capsule)--basically making a cut so the capsule can be extended.  Because of the knee procedure, Elena would have to be casted above and below the knee to ensure stability and proper healing, for 6-8 weeks.  She could be weight bearing (think walk-like-a-penguin, which she can do a little).

Am I excited about that?  Not really.  When I look at a good time frame, it would have to be after the play (mid-February), still in the cold months (b/c otherwise casts would be too hot), ideally during school (she needs the distraction), and out to enjoy warmer weather and swimming/beach.

The logical time frame is right after the play.  She'd be out of her casts by her birthday.

I still wasn't sold, so I went to her regular ortho doc.  He's not a friendly guy, but I think we have a good professional relationship, and he's known her since she was 8 months old.

He saw her walk 10 feet with her crutches.  E was petrified of him, and she stood much taller than usual, not an accurate picture at all.  He said "Do nothing.  She's not that bad."

Now, I'd agree with him if Elena gave him an accurate walking example.  Or if he watched her move for more than three minutes.  Or if she wasn't crying from knee pain two times a week.  Or if her endurance was better--it's one quarter of what it was this time last year, and she's hasn't grown much.  Or if she was safe at home--she's started falling, including once down the steps.  Or if she could still carry something.  How is this picture not that bad???

We have tried almost everything we can think of.  Botox is out--it doesn't work anymore, and it doesn't do much in the first place; she gets daily stander time (in school and home), PT (in school and private), we stretch her every night.  She wears a night brace.  She wears a daily compression brace to try to alleviate tendinitis pain.  We see a massage therapist.  She sinks into her crouch and relies on her hands to try to keep herself from falling.  She is exhausted from just trying to move.  This is NOT the way it used to be.

*sigh* If I've learned anything from these consultations, it's that I made a gross misjudgment with our regular orthopedic doctor.  I assumed that since we've been seeing him since E was a baby, he'd know her better.  I thought he'd kind of know her trajectory, know what to expect, based on where she'd been.

THAT'S WRONG.  Doctors see all kinds of patients every day.

He doesn't remember us, he sees us maybe three times a year.  It's a snapshot.

Which makes me wonder why I put so much weight into his opinion, when one of his colleagues recommends something completely different.

I am trying to keep an open mind, but it's difficult.  As far as something noninvasive, no Botox.  PERCS could be fine for hamstrings/hips (that's basically what they'd do anyway), but it won't help her knee capsule.  I've heard of alcohol/phenol block, but again, that won't help the knee.

Of course I get the fact that no one wants her to get worse, given the potential with surgery and scar tissue or something going wrong (remember, no bony stuff here, just soft tissue). And I know very little of knee surgeries--my guess (?) is it's relatively minor, just to give space, not like reattaching the achilles or something.  But if I do nothing she still gets worse.  Her crouch is a negative feedback loop--sink, less stability, causes pain, sink more.

I assume that if she gets out of her crouch, she will have better ease of movement.  Am I mistaken?  Anyone have experience with this surgery--not osteotomies--to get out of a crouch position?

She was in a good place for the past 5 years.  So, I guess that means we were doing a decent job of keeping her stretched and moving until her growth (?) or daily expectations (school, home, responsibilities, etc.) increased to the point where she needs more than what we are currently providing.  

Anyone want to weigh in here?  I appreciate your comments.

Wednesday, November 19, 2014

Not-So-Annual Card Exchange

If you're new to this blog, I organize a card exchange for Elena (aiming for a late December delivery date)--she LOVES mail! More importantly, the exchange has been a great way to remind Elena that there are other kids out there like her--kids who wear braces, or wear glasses, use crutches (or other devices), who have siblings, friends, go to school, etc. etc.  The best part about it was I didn't say anything when she first saw your picture. But I could just SEE Elena's face recognize she was not alone in her struggle with CP. That is invaluable. It's been fantastic.

If you are interested, please email me (cpmom2009 AT yahoo DOT com) with the following information:

Your name (and/or child's name), child's age, diagnosis, favorite thing(s), siblings, etc.
You address (in full, including country)
How long mail will take to arrive from Virginia, United States (if you know) (particularly important for overseas mail)
What holidays you celebrate, if any, near the end of this year
Primary language--If English is not your primary language, we'll try anyway!

I will not share your email information OR addresses with anyone without your permission. This exchange is between E and you.

*NOTE: This is NOT a gift exchange. Sometimes people send little things, which is very nice--but never expected. We'd most appreciate a card, a message (or a drawing/doodle/coloring if writing is difficult), and a picture of your child. We typically send a card with a message (Elena writes some or all of it) and a picture.

November in a nutshell

I know I have been writing a lot about Elena's crouch, and surgery ideas, things like that.

I see it constantly--but there are so many great things that are going on right now--if you took a snapshot, really, the crouch/surgery/doctor things are the only real negative.  And that's pretty darn good.

Both E and Viv are doing well in school.  Report cards came out last week.  Jason and I were astonished at E's grades--she got three As and two Bs--and one of her As was in Math!  She has really been applying herself--and it shows.  We are so proud of her.  Vivian is simply rocking kindergarten and she loves it.  We are so proud of her too.

Drama Club is also going well.  The director tells me how well Elena is doing every time she sees me.  They are just starting blocking the show, so we'll see how that goes.  The Tea Party will probably be Elena's easiest part, as she'll be seated for most/all of it.  I love the way the director is finding ways to work with and around Elena's disability.  She also has her costume--we need to be sure it fits, but I think it will work beautifully!  E carpools with neighbors in the play after rehearsal, which is another opportunity to be around her peers.  It really is quite nice.

I've volunteered for some after-school sessions with siblings of Drama kids--it's a great way for Vivian to have playmates, and I bring building toys, games, and snacks to try to keep the kids happy. We are all really enjoying it, and I get to meet other kids and sometimes their parents.

We have a nice schedule of school, Drama, therapy, homework, playtime, bedtime on school days.  On the days off, we plan something fun--last weekend we met up with a friend of my parents who is an amateur astronomer (Elena is studying space right now!) and he taught them all about the moon, eclipses, star systems, telescopes, and gave them some fantastic pictures he's taken of distant galaxies and time-lapse photos of the lunar eclipse.  It was so awesome.  The weekend before that, we had a great afternoon with family friends (our kids are the same age and just love each other). This weekend E is going to a big game day at our friend's house--she'll be the only kid there, but I think she'll do just fine.

So, in a nutshell, life is really really good right now.

This month is just flying by...I need to get our Holiday cards started.  I guess that's up next!

Why am I always behind? October round-up

Life has certainly been busy here.  There is so much going on--school, drama, school volunteering (me), homework, therapy, doctors visits...and lots of fun.  October was a beautiful, fun month--so here's some of the things we did!

Random acts of Fall

We've been working hard on our Fall Bucket list.  Hot chocolate, stargazing, leaf raking/jumping, bike riding, making pumpkin treats, seeing's been great.  E can spend more time outside now that the mosquitos are gone for the season.

Leaf Pile Action!

Belvedere Plantation

When the girls were small, we'd bring the wagon and pull both.  Last year, they both walked the whole time--amazing!  This year, with Elena's crouch issues, I brought our double jogger stroller.  Not a great fit...but neither is her wheelchair.  If anyone has a good suggestion for a mobility solution when terrain is too challenging for a wheelchair, and can accommodate two small kids, please comment.  Both E and Viv are close to 40 lbs, FYI.

Anyway, we had an awesome time as usual!  Here are some of my favorite pictures!

Vivian insisted on standing on a little hill

Fam Sunflower picture!

We tried to do EVERYTHING this year--last year we ran out of steam for the corn maze.  With the stroller, Elena and Vivian lasted longer.  Elena had trouble in some of the same areas--keeping her feet on the tractor bike pedals, trying to get on the bouncing pillow.  We had some successes too, like navigating deep hay and getting a running start on the zipline.

Viv has a bit of a competitive streak

E loves the zipline

Ready Aim FIRE!

Both girls had a chance to fire the pumpkin cannon.  Vivian was the first one to hit the target!  She won a free bag of kettle corn!  Elena was chosen to fire the BIG cannon (they pick one child per hour)--and hit the target too, winning us another bag!  They were the only kids I saw there to win!

Falling off the ropeswing into the hay

 Vivian was chosen to be our guide for the corn maze.  She definitely got us lost.  Lucky for us, Elena thought it funny (instead of being too tired to see the humor) and we all had fun as evening came.

Where's Vivian?

My Pumpkins


I let the kids pick their costumes.  Normally they pick ones that go together, and this year was no exception.  Even though I am a classic Star Wars Nerd, I had no influence in their choices.  Yes, they are homemade--Viv's is mostly cardboard and paint (she refused to model for me, so the headpiece didn't fit on quite right) and Elena's is recycled plastic and paint, put on like armor with painted duct tape.  It worked out better than I expected!  No headpiece on Elena--I figured it wouldn't work out with her glasses, and this took so long to put on I didn't have time to put gold makeup on her face and make her crutches black.  No big deal.

E is C-3PO and Viv is R2D2

I expected Elena to last about an hour (previous years it was 2 hours), and she surprised me.  Again, 2 hours, and again, no carrying!

Vivian's Birthday!  

Vivian had her 6th birthday (!) celebration!  She chose a Fairy theme, so we made Fairy houses, played outside, and had a mini scavenger hunt.  Everyone enjoyed good food and great company and lots of playtime.

Dear Vivian,

Happy 6th birthday to you, my little ball of entropy!  You love fairies, legos, Barbie, and computer learning games.  You love being in Kindergarten, even though you read like a second-grader!  You are so helpful at home, and patient with the rest of the family (most of the time!).  Your favorite colors are still purple, pink, and white (in that order) and you want to be a veterinarian when you grow up!  You love baby animals, especially four-legged furry ones of all types.  You can't wait to lose your first tooth, and are looking forward to the cold weather.  I promise I will get you into a dance class as soon as I can!

We love you to pieces, sweetie darling!

Mommy, Daddy, and Elena

Thursday, October 30, 2014

Help! Multi-level surgery to help crouch gait

Hi Doodlers in blogland,

I've been thinking about Elena's worsening gait.  Most days, it's bad.  Feet splayed out, dragging, slow.  There is a helplessness creeping up in her.  So it's time.

We have two orthopaedic visits this month (different docs--time for second/third opinions), where I plan on discussing surgical options.  I'm thinking way ahead here to the classic multi-level approach (hamstring lengthenings, femoral osteotomies, possible hip osteotomy, etc.).  This is the worse-case scenerio, I think.

How bad is it?  Anyone with experience out there?  I am not necessarily pro-multiple surgeries, but I want to arm myself with information.  Pros/cons?

I am also considering things like PERCS (everyone can pipe down about NJ's Dr. Nuzzo.  I'm not counting him out, I just have a very difficult time believing 100% success rate with no follow-up from his patients).

I am also tentative.  I think surgery is the right call, but I'm not sure which kind, or when, and how long between this and whatever is next.  I plan on having Elena weigh in here too.  She is scared to death of surgery (I think she'll be relieved once a procedure is over, and she'll remember it's not that bad) but I want her to have understanding of why, when, and have her agree that whatever we do (or don't do) is the best for her body.

I am particularly interested in those who have had femoral/hip osteotomies prior to puberty and then how that worked out during/afterwards.  I need data!

Please comment.  I value your experiences.  And as always, thank you for reading!

Monday, October 13, 2014

Drama Club

At Elena's school, any 4th or 5th grade student can join the Drama Club.  They meet twice a week after school and perform a play (it will be in February).

Jason and I thought this would be a great opportunity for Elena.  It would give her a social, fun outlet to do with her peers, and hopefully make strong friendships and build confidence.  I asked E if she was interested.  She said no.

So, I waited a few days.  Jason mentioned it at dinner, hoping Elena was more open to the idea.  Nope.

At PT, Theresa mentioned it, and that several of E's friends were planning on joining.  Elena said she didn't think she wanted to do it...but she started wondering if it sounded fun.  By the end of the session, Elena decided she wanted to join Drama Club.

I had already arranged her after-school schedule, figuring Drama Club wasn't happening; now that she wanted in (and I support that idea), something had to move or be removed from her week.  I cringed b/c that regular event was her weekly private physical therapy appointment.  Next month, her schedule will open up a bit and we'll be able to arrange a new PT regimen--but until then, appointments will be less regular.

The first two days of Drama Club were auditions for their production, the musical version of Alice In Wonderland.  I accidentally deleted an email with preparation instructions and song practice, so Elena and I were in the dark as to what auditioning actually meant.  Each day Elena came home super happy and said auditions went well.  After the second day, there was a parent meeting.  The director made sure for us to remind our children that not everyone can get the part they want.  She advised the parents on how to deal with disappointment, and sent a sheet around for the kids to put down the part(s) they most wanted--just in case a child really wanted a small part, or wanted a backstage role, or something to that effect (in general, all the girls wanted Alice or the Queen of Hearts and all the boys wanted the Mad Hatter or the Caterpillar).  Roles were to be posted (sent by email) two days later.

We spent the next few days just doing our thing, hoping that Elena wouldn't obsess over what role she'd get (she didn't) or if she was nervous (she wasn't).  I kept checking my email, mostly because I was curious what role the director felt that Elena would best fit (naturally, she's the only impaired person in the club).

Roles came out just before midnight Friday.

Elena is Alice.

October: Up to Speed

So, back to present time.  Elena got her new knee brace (we refer to this as the "sleeve") to help alleviate pain from tendinitis.  It can get hot, so sometimes she takes it off halfway through the school day.  With the weather getting cooler, this happens less.

The Sleeve

The sleeve is bulky, but not enough to really limit her movement.  I can definitely see in Elena's stance when she is tired.  She is also pronating worse (sinking in at the knees from spasticity, tendinitis, and fatigue) and it's leaving her navicular bone and malleolus with pressure points from her Sure Step orthotics (with the yellow velcro in above picture).  It's not very bad, but it is different from the summertime.  I think another round of Botox injections might be considered (hamstrings/adductors) to help with the constant crouch (we see her ortho at the end of the month).

I've made a few changes at home, to try to get the kids (ahem, Elena) more excited about self-sufficiency, homework, and having fun.  If you have other ideas where we can help E's self-sufficiency, efficiency, or things that have worked for you in the home--please comment!

I bought a set of crutch holders from Walk Easy, Inc. (that's her brand of crutches) and have them next to wall hooks.  It keeps them from being a tangled mess with shoes.  Once the kids get home, they hang their backpacks, open them (so I clean out their lunchboxes and homework is on the brain if there is any) and E hangs her crutches by pushing them in the clamps.

"Crutch Park", shown with a broomhandle

closeup of clamp

In the kitchen, I made a space under the counter to put plastic dishes and cups.  That way the kids can get a drink or a snack on their own.  

I made a homework nook, using one of the homemade tables Grandpa made.  Shown with her adjustable chair here, she can start her homework whenever she likes.  It's in the office, with the grown-up desk, and I even put the white noise machine right by the door so Elena can tune out background noise (ahem, Vivian being crazy) while she does her homework.

Homework Nook.  Pictures of E and her Math Coach on her tack board.

The Fall Bucket List is in action!  The kids helped me make a tree with leaves that "fall" every time we do them.  It's going to be a fun season!

We're going to have to add more leaves!

Another recent development is with Elena and one of our neighbors.  Vivian has four close friends within three houses of ours; she always has playmates.  While there are many fourth graders in the neighborhood, none of them are in walking distance to Elena, and that was always a problem.  By chance, our third-grade neighbor K and Elena have begun a friendship--K has several siblings and is often away or at another friends' house.  It has been an awesome change to see E out and about, inside and out, with a nearby friend--without any help from me!

Bonus pictures!
Viv spots a balloon landing
Elena finds a treasure at the Archaeology fair!

Art House

Viv catches the Moon

Welcome to 4th grade AND Kindergarten!

Here are my girls on their first day of school!

Elena, Fourth Grade

Vivian, Kindergarten (Elena's 2nd day of 4th grade) 

And since the school year is already underway, we've had lots of great experiences.  Vivian is doing very well in Kindergarten, and loves every day of school.  Elena loves seeing familiar friends, and is doing well socially and academically--this is a big deal, b/c in third grade she seemed to struggle with the material (especially math).  Elena's educators (teachers, aide(s), PT, other support staff at school) are so wonderful and do everything they can to help E be involved, having fun, and moving her best.  Her classmates--and the student body in general--are fantastic.  

River hunting at her first field trip! 

Checking out river creatures to see if the water is healthy

Vivian's first field trip to the Apple Orchard!

 Overall we are doing well with the school schedule.  Both girls go to bed early on school nights.  We've structured the day after school as to stress playtime/downtime immediately after school, then homework (usually it doesn't take Elena too long!), dinner, optional more homework/playtime, then bedtime ritual (stretches) and reading. It's working well, but with extracurricular activities, time can be a struggle.

By extracurricular activities--I mean school-sponsored afterschool classes.  I normally give each kid a choice of one class--this year, both girls picked Cooking (the classes last 6 weeks and vary quite a bit; E's first class was Chess in 2nd grade).  Then, Elena decided to join Drama club.  That's another post.

bonus moi

End of Summer 2014 Recap!

I have so much to write about!  I wanted to wrap up the summer stuff, but then school started, and E's knee here I am, a few months late.

The biggest thing we worked on this summer was independence.  Things like getting dressed (everything except putting on her kiddiegaits, which can be tricky), brushing teeth, brushing her hair.  If she forgot something upstairs, she had to get it herself.  Carrying books and toys and things.  Elena can already undress herself completely and get into the tub; this summer she was able to wash herself (including her hair), get out (wet and slippery), dry off, and then get dressed for bed.  We worked on doing these things in a timely manner, as to prepare for school mornings and evenings.  We still get a lot of complaining, but overall Elena has made a lot of progress being self-sufficient.

When we did special events, we let Elena try things herself--getting in and out of cars/carts/rides/doors, navigating steps/trails/water, figuring out how to carry/build/transfer items--and then, as always, how to balance doing these things in a reasonable amount of time.  Our biggest issue right now is making Elena start something early; she knows it takes her a certain amount of time, but she procrastinates a lot and then complains tons about being rushed (hooray for age appropriate behavior, right?).

All of this work on independence is scratching the surface of an essential skill:  problem-solving.  It's a long, arduous struggle--but we are making progress!

So, here is the end of our summer, in recap form:

W e went to Busch Gardens with our friends, the Rs.  I brought Elena's wheelchair.  Elena used it when we were going longer distances, and she had enough energy to climb the huge playground--even the rope bridge (!) and stay up late for fireworks!  Vivian hitched a ride whenever she could. As always, Elena is the adventure seeker.  Vivian is getting braver every day, but not as adventurous as her big sis.

Water Play

That's E, white shirt--did all those steps herself, no crutches!

She couldn't do this last year!

I love that Viv is big enough so they can ride together! 

Monster Shirt Girls

Awesome Fireworks with Friends
Roller Skating at the local community center is always a fun, free (!) time.  Vivian is an independent skater (and working on going backwards!).  Elena needs a lot of help, and grown-up backs need a lot of breaks--but it's still great fun.  

Dad and E
Aren't they adorable?

We spent several afternoons in parks/playgrounds, and biking when we could.  Vivian is an independent biker.  Elena's upright bike is small for her.  The larger bike frame seems too big for her to put her feet down quickly, but the smaller one she tips with the small training wheels.  I think the solution is to get the bigger bike frame, and extra large training wheels.  In any case, she has spent more time on her recumbent pink trike.  

Art in the park

Walk Bike Play Day

We went camping with our friends, the S-R family.  We met some great new people, and the weather was really nice this time (not much rain!).  We played games, sang songs, rode bikes, and broke in our new tent!

E's gorgeous fairy house

Our "Taj MaTent"

Lake Exploration

Great way to end the summer.  Huge thanks to our friends for making these little trips possible and super fun!  Next up...return to school!

Bonus Vivian:  washing my car

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!