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