Braces and Laces

We took a road trip down to Tampa on Monday so that Ellie could go to the Shriner's Hospital there.  We've been going to the Shriner's Hospital in Minneapolis for a couple of years now, and have really grown to appreciate the care and equipment we've been given there.  We've valued the "second opinion"s we've received at Shriner's and have found that some equipment is easier to obtain through them than at home.  So, it's worth the 8-hour drive every 6 months or so.

Ellie's in need of new AFOs (leg braces), and we've been putting it off till after her SDR surgery, waiting to see what her (possibly new) needs and abilities are.  So, off to Tampa we went...and sure enough, they also agreed that it was time for some new braces!  The entire experience was, once again, very positive and we are so grateful for this medical care, especially now that we're in living in the US for a few months.

We have to go back on Ellie's birthday to pick up the finished AFOs.  Nothing spells "Happy 5th Birthday!" like a trip to the hospital to pick up new leg braces...

Molding the new AFO braces

It wouldn't be a Shriner's Hospital visit without a picture with the big Shiner-Guy at the entrance!

Other than that, Ellie keeps plugging away at her rehab.  So far, this week has gone a lot better than last, so I think the little girl is getting used to being worked so hard.  Sweet thing! 

Here's one more picture that we found interesting.  Richard was driving with Ellie and when he looked back, he saw her doing this:

For most of you, this isn't something blog-post-worthy, but for us, it DEFINITELY is!  Ellie has NEVER been able to bend her knee and lift her leg onto her car seat before.  Pre-surgery, her little leg was too stiff.  Now, we rejoice as we have to re-tie her shoe every time we put her in the car!

You CANE Do It!

Ellie "walked" with canes for the first time post-SDR last week!  Of course, I use the term "walk" loosely, as it's very slow going.  When zipping around in her walker, Ellie uses a lot of upper body strength to help her along.  With the canes, she's unable to do that, so her upper leg weakness is really visible.  BUT, we have to start somewhere, and I'm happy that she was able to take these steps only 3 weeks after surgery!

PS: Ellie has been having a little difficulty adjusting to her new, rigorous schedule.  We had a few meltdowns at therapy last week.  So, if you could pray for continued resiliancy and that this week would be tear-free, my mama-heart would be very grateful.  Thanks!

Hard At Work

Since Ellie was by herself in class on Tuesday, I was finally able to snap a few pictures!  'Course, after 10 minutes, my memory card was full, but, hey, I tried.

So, here's a glimpse into Ellie's new routine of workin' her tushy off!  These pictures capture some of the standing work she does every day at her conductive education sessions.  These are very difficult moves for her, so any "ooo"ing and "ahh"ing is warranted.

Ellie's ability to stand straight is one of the gross motor functions that has been most affected by the SDR surgery.  She lost a lot of strength in her thighs, and those are the muscles most used during standing.  So, we're working hard to pump them up!  Ellie continues to amaze me with her spirit; continuing on with a task that is so difficult.  That's my girl!

Ellie practicing her high kneeling.  Again, this is a movement that is very difficult for her, because of her weak upper leg muscles.  Of course, that means that the sweet girl gets to practice LOTS of high kneeling!

Part of our therapy is helping Ellie regain some confidence in her physical abilities.  She is very uneasy about her "new legs", so little by little, we are pushing her to do things that stretch her.  Here, you can see that she is very nervous about Gabby letting go of her legs and standing all by herself at the ladder.  BUT, she did it!

Working on squating down, keeping that position for 30 seconds, then pulling back up to a stand on the ladder.  That's definitely hard work...YOU try doing that! :-)

Lastly, here is a short video of Ellie doing some of these exercises.  Gabby, her conductor/instructor is from Hungary and was running out of English songs to sing to Ellie.  She asked Ellie if she wanted to hear a Hungarian song and Ellie was quite thrilled.  So, I guess we can add language training to the therapy mix!

Walking With Braces

Ellie is starting to walk with her braces (AFOs, or Ankle Foot Orthotics) on!  We are hoping that by wearing her braces, she will keep flat-footed more often and that her scissoring (leg-crossing) will also be helped.  This video is from yesterday (19 days post-SDR surgery), and this is the very first time she's walked with her braces AND sneakers on.  We were very impressed!  We will have to work on the her right foot turning in, but it's a good start.

One of her braces without any shoes on.

With the shoe on.  Ellie normally wears a size 8.5 shoe, but in order to fit over the AFO, we had to buy a size 11 wide!  You can imagine how bulky and heavy that feels on her foot.  For that reason alone, we were really impressed by her ability to walk with them as well as she did!

Retail and Aquatic Therapy

Ellie surprised us yesterday!  She INSISTED that she wanted to walk from the parking lot into JC Penney, and from Penney's into the main mall.  That's a LONG distance, even pre-surgery, and Richard and I thought she'd never make it.  HA!  When Ellie wants to do something, she does it.  And so she walked....that entire way!  Love that kid!

The reason we went to the mall in the first place was to look for runners (sneakers) to fit over her braces (AFOs) so that she can start walking with them on.  We found some great shoes and I know her therapist will have her in them ASAP.  Right now, it's very difficult for Ellie to walk with her braces on, but they *do* help her keep flat-footed and combat some of the scissoring (crossing) of her legs as she takes steps. 

After some retail therapy at the shoe store, we opted for the aquatic version.  Ellie's incision was finally healed enough that she could get into the swimming pool and she was, to say the least, PUMPED! 

And Then It Was the Weekend!

Time for another update!

Ellie continues to gain strength at a good rate, yay!  Richard and I think that she is very close to being at her pre-surgery walking levels already.  Today she zipped around in the stores at the outlet mall (God Bless America :-)), and actually protested when we offered her a ride in the stroller.  Obviously, she's feeling more comfortable in her walker too! 

We had a really good end to our therapy week.  On Thursday, we spent 1.5 hours with our new physical therapist, Jessie.  She was awesome!  Ellie loved her, as she used lots of cool toys to "mask" the fact that Ellie was actually doing therapy.  She gave me lots of good tips, exercises and stretches to do with Ellie at home.  On Friday, Ellie had another 3-hour session at the conductive education center.  They worked her HARD!  She protested a bit, but powered through.  Ellie was able to do things that I've never seen her do!  She was able to squat down, with feet flat, and touch the floor with her hands while doing it!  I wish I had a picture (hopefully on Tuesday, when she's alone in the class).  From the squating position, she was able to stand up, using a ladder that was attached at the wall.  That movement requires a LOT of strength, especially in the thigh muscles, so I was really impressed at Ellie's ability to do it. 

We have also noticed a considerable difference in our ability to dress Ellie and help her with toileting.  Because her legs are so easy to move around now, she is able to help us with putting her pants on.  She is also able to use the potty much easier (imagine sitting on the toilet without being able to separate your legs...it's not fun, for the child OR the caregiver).  We are thrilled by this!  So is Ellie, as she's able to expand her realm of independence.

So, we enter this weekend with happy hearts!  I know that all three of us welcome a couple days off.  We have lots of exploring to do, of course! 

We miss you LOTS.  I was a little homesick yesterday when I was forced to watch the Olympics via the American feed.  It's almost surreal to think that we were in Vancouver a couple of weeks ago, under very different circumstances.  BUT, we know that you are loving, praying and encouraging from afar and that buoys us forward!  THANK YOU again. 

Have a great weekend!

Of course, I'll leave you with some new pictures!  Ellie and I ventured out to Downtown Disney (the free Disney "park", filled with shops and restaurants and BEAUTIFUL walkways) after therapy one day, and here are some photos of our mini-adventure:

These are a few pictures I took especially to showcase Ellie's new ability to sit on a restaurant booster seat.  WHOO HOO!  For 3 years now, we have carried with us our Fisher Price booster seat (with a belt strap and a hard back, adding more security for Ellie) everywhere we've gone.  Since the surgery, Ellie has been able to bend her knees perfectly and sit balanced on a "regular" booster seat.  I can't even express how awesome this!

So happy to be sitting balanced on a restaurant booster seat!

At this point, she was getting annoyed that I was taking pictures of her sitting tall, so she started with the funny faces as she said, "cheese!".  Stinker.

The "free Disney" places only have the princess statues, not the real-life versions, but Ellie was excited nonetheless.

Some nice tourist offered to take our picture together! 

Two pink princesses...

Work It!

Survive the first day of intensive therapy: check!

Ellie did it!  Today she had her first full, 3-hour conductive education class at the Conductive Education Center of Orlando (CECO).  I was worried that she might protest with some tears when I left the classroom, but she was so distracted by her new friends that she didn't even notice me leave!  There were 3 other kids in her class today and Ellie was very interested in getting to know them :-).

I was able to take small peeks into the classroom every once and a while and I observed Ellie working HARD!  The first hour consisted of massage and stretching.  The second hour included walking, and other "locomotion" activities and the third hour concentrated on standing and sitting.  That's a lot of physical activity!  I was very impressed with her conductor/instructor, as she seemed very knowledgable and kind.  Ellie really seems to like her, which is a definite plus.

For a first day, I thought Ellie did super-great!  She was tired and grumpy on the ride home, but she needs to get back into her physical routine.  I'd be grumpy too :-).  I am confident that every day will be a little bit better and that she's going to accomplish awesome things at this place!

I'm sorry that I don't have pictures for y'all.  I had to sign a 500-page legal document, promising I wouldn't take photos of the class, as to infringe on another kid's privacy.  Ellie is the only child in class one day per week, so maybe I'll take that time to do some camera-snapping.  Until then, forgive me!

12 Days Post-Op

Video of Ellie walking in her walker today, 12 days after her surgery. Go, Ellie, go!

Staying Put

We're all in Florida.  Safe.  Settled.  Warm.  Happy.  It's a very good feeling!

Thank you for your thoughts and prayers during our travels.  Richard and my dad did not kill each other and apparantly even had a decent time during their 35-hour drive.  Ellie made a few friends on our Orlando-bound flight, which made the time zoom by.  Everything went even better than anticipated, yay!

Unfortunately, I don't have a myriad of other details for you today.  We were *supposed* to have our first physical therapy session this morning, but our new therapist was sick.  So, we made it a "home therapy" day and spent some time walking and doing extra stretching.  Ellie is regaining her strength quickly!  Today she walked nearly a block, without any assistance, in her walker.  Whoop!  She was definitely tired after that, but the fact that her legs aren't collapsing as much is a feat (or "feet"? :-))!  She isn't quite at pre-surgery levels with her walker, but it's coming fast. 

Tomorrow we have our first conductive education session.  I'm excited!  I'm also preparing my heart for some Ellie-tears.  It may take her a few days to get to know and love the new instructor and kids in her class.  There's no doubt that she will adjust quickly, but probably not immediately.  You can pray about that if you feel inclined :-).

Love you all!  Special cyber hugs to all our Canadian loved ones who are freezing, tee hee! 

(Here are some pictures of Ellie walking this afternoon and getting her feet wet in the pool.  She can't swim for another week, as per the doctor's instructions...so feet-wetting it is!)

Packing, Stretching and Regaining Strength, Oh My!

Wow, y'all know how to stroke my cyber ego!  Thanks for all the comments and requests for frequent updates!  I feel as though our daily routine is a bit of a bore, but I'm always happy to "talk" a lot, tee hee!

Unfortunately, our physical therapy sessions were cancelled this week, as our therapist was in a car accident.  It's not life-threatening, but she will be unable to work for a couple of months.  We feel awful for her. 

BUT.  This is a temporary therapy reprieve for Ellie, as I just confirmed that she is set to start with her Orlando therapist on Monday morning!  We will see her every day next week.  Ellie is regaining more strength, so I am confident that she is ready to start her intensive therapy in a few days. 

Jelly B'Ellie continues to do some walking in her walker every day.  It's fun to see her get used to the way her legs work now.  We still need to hold onto her pants-waist, as she will, every once and a while, collapse unannounced.  I am getting pretty confident with doing her 3x daily stretches too.  I'm still sometimes struck by the irony of me, the liberal arts lover & biology-hater, becoming a make-shift physical therapist! 

Richie is en route to Florida.  Pray for safety and good weather.  And that my dad won't take him out of the will after this LONG, LONG road trip :-). 

Sorry no pics today.  I'm busy packing and cleaning and getting ready for our trek down to Orlando.  We haven't quite made it out of our PJ's today!

Thanks again for your continued support, interest, love and especially prayers.  I'll keep updating, I promise! 

Home Sweet Home

We're home!  For a few days, at least.  These couple of weeks are a bit of a whirlwind for our little family!

The flight home went very well and Ellie had no problem sitting up the entire time. Since being released from the hospital, she has only been on over-the-counter Tylenol and has been managing the pain just fine.  I am SO GLAD that part of this journey is over because it was the toughest on my mama-heart.

Ellie has been surprising us with how she's been able to move around since being home.  She is AMAZING, if I say so myself!  The doctor had said that it would take 4 to 6 weeks after the surgery for Ellie to be back walking in her walker.  Well, scrap that, because the girl walked up and down the hallway at home today!  It was so cool to see how she was trying to figure out how to work her legs, now that they feel and work so different.  I can't WAIT to see what's ahead for her!

Richard and my dad leave for their southern trek tomorrow.  They are driving down to Florida.  Ellie and I fly down on Sunday.  I will probably update this blog less frequently now that the surgery week is over.  Unless, of course, you say otherwise.  I am eager to please :-).