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