The Post I Didn't Want to Write

This has been a pretty emotional week for me, and to be quite honest I'm not sure where to start.

There are three main parts to this:  school, E's visit to her orthopaedic surgeon, and her last PT appointment.

Regarding the first point (school), Elena has a fabulous team of people--educators, therapists, aides, and fellow students.  We have a few goals for her this year, but they were more or less informal and I had a great start with her team in the beginning of the school year.  The goals (aside from her IEP) were:  1) E will keep up with the class (under her own power), 2) she will carry her own lunchbox, 3) she will navigate steps at the school herself with good speed and 4) she will maintain focus to stay with her classmates (she is very distractible in hallways and tends to lag behind).  Then my husband was on an extended work trip for three weeks, and everything else disappeared off the radar.   When I reconnected with the team, I got some surprising news.

I had heard previously that E was always late, which I assumed was b/c of her losing focus in the hallways between classes.  Actually--that wasn't the problem at all.  Elena was always late--WITHIN the classroom.  She's last to the table, last to circle time, last to get up from the floor...and not only last, but actually very late.  At home she gets around without issue--but she's not hard pressed for time, unless it's in the morning for the bus, and that's not a huge problem.  I was floored. I figured the biggest obstacle was distance (for example, to the music cottage outside the main school)--and I was very wrong.  I'm hoping this is a focus issue, something related to her not wanting to stop a given activity to make it prompty to the next INSTEAD of a giant gross motor issue in the classroom.  I guess I hope that, anyway.  I was pretty disappointed that we had another/different/additional problem to deal with on top of her obvious disability.

Then we met with E's doctor, a yearly scheduled visit that often gets pushed back.  Honestly, this doc doesn't do all that much for us; we frequently get the "keep doing what you are doing" one-liner, and I have to press for more feedback, which I do.  During his examination of E's legs, he mumbled "that's interesting" and didn't continue.  I asked him to elaborate.  He said it was "shocking that Elena had so much spasticity below the knee, considering she had a rhizotomy".  I didn't know how to process this--what was he talking about?  And then I mentioned something about how SDR gave her the power to differentiate her right and left legs.  I can't remember the details--the conversation stopped (we were at the end of our appointment anyway), and I knew I was defensive but curious and the visit was over--it's sort of a blur.

A few days later at our usual PT appointment, Theresa asked about our doctor visit and I relayed what the doc said.  She immediately agreed.  WHAT?  What did that even mean?  And then Theresa said something that resonated--that patients who have had SDR typically do not deal with so much tone in their lower extremities post-surgery.  E is on her toes--A LOT.  The impulse is strong.  She can put her feet down when standing, on command, and stay there--so the problem is NOT length.  It's spasticity.

The whole reason we had SDR in the first place.

I felt like someone dropped an anvil on me.

The reality is...we don't have any other options.  This weight is so heavy.

I've tried to bounce back--honestly, we are NOT where we were pre-op.  This is a fact.  I've been thinking about this a lot, since I was asked to do a guest post of "where are you now" post-SDR, and up until last week, I was all sunshine and rainbows about it--and now I am disillusioned.  Pre-op, Elena's legs, when straight, were like steel--I felt like I was literally going to break her legs when trying to put her in her braces.  If she tried to move one leg in space (sitting, hands-free, or sometimes with her walker) both feet would move.  She fell "like a tree" all the time.  She could not side-step or back-step, etc. etc.  Post-SDR, the biggest difference I have always noted was that she can differentiate (and bend) her right and left legs--making walking, dressing, stairs, and protective responses much much more feasible.  I guess I didn't realize that most patients do those things with their feet flat--with a better foundation for balance.  It's easy to put her feet in her braces, but with them on and in her shoes, she's still on her toes.

This "up-on-her-toes" phenomenon didn't just happen.  It's been as long as I can remember, really, even post-op.  She's better at putting her feet down, but it HAS to be a conscious action.  I guess most other patients don't have to do that.  Theresa said that she's seen E's biggest gains after her lengthening procedures.  I figured that was because of the combined forces of SDR and the lengthenings, but now I'm not so sure.

I am quite upset because her spasticity is still a problem--and it isn't getting better.  I don't actually know if it is getting worse, but simply having such tone can cause all sorts of issues as she grows, and aside from stretching and therapies I have no other options (save maybe phenol block?, of which I am not keen).  I'm upset b/c I didn't think I had to continue to deal with this.  I guess we have been all along, but now that I am conscious of it, I find it very troubling.

I do think that she can have better command of her body (feet down, better recruitment) once she learns how to move "from the center" (think dancing or yoga)--but that is such a mature concept, it will be many years before she can understand this.  It's my job to try to keep her strong, stretched, and preserve her joints until she gets there--and if spasticity is bad, I don't know if I can do it.

Like I said...this weight is heavy.  I feel like Sisyphus.

Pumpkin Patch 2012

We took advantage of a great weekend and went to the BEST pumpkin patch ever...Belvedere Plantation!

Both girls were completely stoked and couldn't wait to get in the car that morning.  We decided to bring the sit n' stand stroller, and have Elena do as much walking as possible but offer the stroller if she wanted a break.

Scarecrow Family

Viv on the Jumping Pillow

E on the Jumping Pillow

Both E and Viv went on the big Jumping Pillow; last year it was a real challenge b/c it was very crowded.  This year, the crowd was thin this morning AND the staff only let a few kids on a time (normally by size/age) so it was a much safer environment.  Elena even JUMPED (with both feet), LANDED, and then walked around a bunch (turning around, even)--that's a huge change from last year!

Viv made sure we knew she was "back" after disappearing in the corn maze (each time)

Train Girls

E admitted she was a little "old" for the tractor train.  She also admits it's "still fun". 

Vivian on the Tractor Bikes

E had some trouble on the Tractor Bikes

We tried a few new things this year--one of them being the Tractor Bikes.  The seat is adjustable (distance from the pedals) but they are ALL very wobbly and it's still a stretch for my girls to reach the pedals.  Elena didn't really get it, and got pretty frustrated.  She did like steering down the path while coasting on a downhill.  Vivian did have some pedaling success.  It was really nice for the girls to try something new--and to NOT be the only parent having to push their kid around the track (there were A LOT of us).

Elena ready to launch

Viv ready to launch

Vivian on the ropeswing!

E on the ropeswing!

We spent more time in the haybarn this year!  This was very exciting b/c the hay is SO DEEP, it's hard for Elena to walk in--and her crutches slip away if she leans on them too much.  Mostly we navigated by hand-holding, but E did a good job of lifting her legs up as we went along.

Making a Haystorm

Pumpkinas

I'm going to crop this one and repost

Zipline

Viv did the big slide all by herself!

Elena really wanted to do the corn maze.  It was late, and she had been up for most of our trip...last year we pulled both kids in the wagon.  This year, we opted to do the short kid's maze on foot (our guide said it would take 10-15 minutes, as opposed to the 20-90 minute other maze options) and it was AWESOME.

Our fearless leader

Such a happy girl

This way

We made it through the maze...and in a good amount of time.  Jason and I were very impressed that E chose to do it on foot.  She wanted to do the bigger maze...maybe in a few years.

Hayride to the patch

Sisters

It was WINDY!

We took the hayride to the pumpkin patch.  We were hoping that this year E would be able to venture out and pick her perfect pumpkin.  There were lots of great pumpkins close to the edge, which was convenient b/c E had a hard time navigating the vines again this year.  E fell a few times (so did Vivian, and many others) and got a bit discouraged.  Still, we all enjoyed ourselves.

Great choice

Searching for the perfect pumpkin

I think we gave up on getting them both to smile at the same time

My handsome better half

It was another amazing trip...I'm glad we went on a warm day (even though a cold front passed through later that day) and especially on a day where it wasn't too crowded (it's early in the season for the Fall Festival).  It was wonderful to see how much the girls have grown, and how independent (or getting there) both Viv and E are becoming.  Elena didn't use the stroller that much this year.  Next year I think we may bring something...but it's possible we might all be only on foot.

Grandma

Grandpa

Huge thanks to Grandma and Grandpa for making the trip with us, and to Grandpa for taking so many of these pictures (I know I post a lot of them, but there are SO MANY GOOD ONES!!).  We'll be back again next year!

Getting started...Card Exchange 2012!

If you're new to this blog, I organize a card exchange every year for Elena (aiming for a late December delivery)--she LOVES mail, and the exchange is a great way to remind E there are other kids out there like her.  Kids who wear braces, or wear glasses, use crutches/wheelchair/other devices, who have siblings, friends, go to school, etc. etc.--kids who might be different.

The typical card exchange involves a little letter telling E something about yourself, or your child (they can write part/all of the letter, or send a drawing or something) and a photo of you, your family, your child, or favorite pet, etc.  To get a letter in mail from this exchange is a great experience--to know that someone out there--a stranger--connects with you, values you and your story--it's simply fantastic. 

I certainly hope that everyone who has taken part in the exchange previously has enjoyed their letters--occasionally one is late, which is why I'm starting this early--IF you are a overseas follower of The Doodle, we'll need to get started on letters (I learned the hard way they can take a while!).  

If you are interested in a card exchange, 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 DON'T WORRY, 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.  And, maybe E's sister Vivian, b/c sometimes she likes to write letters too. 

*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.