Learning to Walk Again

11 Weeks Post Surgery

Jordan has been wearing the gel sleeve, doing his leg lifts and spent his spring break waking up early to go to physiotherapy.  Some days there's pain and discomfort.  His limb is changing in shape and the prosthesis is feeling too big.  They adjusted his prosthesis in height and he needs to walk with this basic model before they upgrade the style.  Sort of like getting used to the tricycle before learning to ride a two wheeler.  Sometimes the tricycle sucks.  I had to strongly encourage him to keep with his exercises and some days it was a bit of a battle.  We had a few days where the prosthesis went flying across the room and told "I'm never wearing it again and will use crutches for the rest of my life!  You don't know what it's like and how much it hurts!"

Yes.  It's hard.  And Jordan's right.  We don't know what it's like.  So I reminded him that we just want to see him happy, so if he wants to use crutches for the rest of his life and he's happy, we'll be happy for him.  He's the one steering this boat and he can take it in whichever direction he wants.

Wednesday, April 2nd, 2014

The next day we went back to physio.  He put it on... we held our breath, wondering if he would try.  He swayed, just bearing weight on his new leg.

Then he took some steps while holding onto the bars and gradually added more weight on that side.

The physiotherapist said, "and soon we'll get you doing stairs."  Jordan said, "Like this?"

WOW!  We were so surprised, impressed and proud of him.  It was awesome!  They said that he was ready to begin wearing his leg out and about.  That evening, Jordan was invited to play sledge hockey with the senior team against the University of Manitoba Bison Hockey team who were learning to play.  He walked to the arena with the help of arm crutches and surprised his friends. It was so fun to watch him gliding across the ice, playing with these adults and keeping up!

Jordan is in the centre of the pic

Tuesday April 8th, 2014

This past week, he went to school wearing his new leg and his friends celebrated with him!

We had a few days of spring!  So it was time to pull out the shorts and go for a walk around the block with dad.

The following day he was sore and didn't want to go to physio.  We went hoping to fine tune his technique.  She started with some warm up leg lifts with a weight on his prosthesis and some weight shifting toys.

Friday, April 11, 2014

Physio can be fun!

He was encouraged to slow down his steps to focus on the heel toe movement and slowly swing his leg forward which places all his weight on his prosthesis.  She asked if he could walk without the bars or crutches.....

Look, no limping!

I have to say I had to hold in my super excited shrieks of joy!  Remember when your babies took their first steps on their own and you'd pick them up, toss them into the air and hug them close, feeling so proud of this major accomplishment?  I had this feeling, I just couldn't toss him into the air!
So proud of you Jordan!  What mattered most was that he was proud of himself for the work he did and his big accomplishments this week.

There is no other way to describe this but as a journey.  We celebrate with Jordan and acknowledge  how far he has come.  We accept the bad days and rejoice in the good days.  Jordan is taking this journey one step at a time, at his speed.  We know that whatever he sets his mind to, he will achieve!

Thanks for all your continued support.  We are so blessed.  

First Day of Spring - A New Beginning

Today, on March 20th, 2014, Jordan received his first brand new prosthetic leg!  This has been a process.  On February 26th, we went to the Rehabilitation Centre for Children where they examined Jordan's leg and confirmed that the healing was coming along great.  They made a cast of his leg to create a temporary prosthetic.  He also received a gel sleeve that he had to wear daily just to get used to.  This gel sleeve needs to be worn with the prosthetic. 

When a limb isn't used regularily, it can retain fluid and lose muscle.  So this first leg was created to get Jordan used to standing and bearing weight on his leg.  He was given exercises to do over the next few weeks to build up his muscle, and ordered to wear this gel sleeve every day.  Then he tried on his leg.

His leg slid in with no pain or discomfort.  He smiled, then stood up.  Jordan said, "This looks good on me!" 

He was able to put full weight on this leg which delighted his team!  This is considered early in the big picture and we are all thrilled for him.

They added some fiberglass to make it more durable and we took this one home to practice.  His next visit is in a few weeks where they will take new measurements of his leg since all his practice will change its shape and he will have his walking leg in a few weeks after that!  The next one he will have some options for patterns and a fancy foot. 

One step at a time.  Happy Spring!

Happy Valentines' Day to Me

3 Weeks Post Surgery

Many important steps were made last week.  On Wednesday, we went to the cast clinic to get the stitches out.  Jordan was not ready to look at his new leg so Jason was up by his head and distracted him during the procedure.  I held his leg so he wouldn't kick the tech in the face.  The doctor said that his leg looked beautiful.  He was healing well! There was a wire that had to be removed which kept the tissue in place and Jordan was very happy to have that out!  He could finally stretch.  I asked the Dr. to bandage again - he looked at me funny since it was no longer necessary and I explained that Jordan needed privacy to look at his leg for the first time.  The cast clinic was not a suitable environment for this personal moment.  They bandaged and we were off.  We also went to the chiropractor that day and he saw an improvement already in his alignment!  He also confirmed this was the best decision for Jordan.

He went back to school the next day.  Jordan has been in school on and off for the past two weeks and managing well.  His nervous parents wanted to make sure supports were in place there and Jordan calmly said, "Mom, Dad, I got it!  I can do this, and my friends will help me."  And they have.  We are so thankful to his friends, to the staff and for the community we live in!  Thank You!

Thank you Neighbourhood for the Recovery Gift Basket!

 On Friday, Valentine's Day, after supper, Jordan says, "I'm ready to unwrap my leg."

I got some scissors and he started snipping the bandages.  He quietly observed the new shape of his leg and after some time said, "That's amazing what they can do!"  So true!  He touched the skin at the bottom, around the stitches and said it was cool.  He was in awe and completely accepting of himself.  He wanted to take a bath with his swim shorts so we could stay with him.  He was happy!  I told him it was ironic that he chose to look at his leg on Valentine's Day.  This was an act of self love, a beautiful moment.

On Saturday, he wanted to get out, and he requested we go shopping.  We went to the mall and expected to borrow a wheelchair from customer service.  Instead, we got a scooter!

He was a careful driver, until we entered an area that was empty...

He received a nice card from his Oma and Opa (with a cheque) and they suggested he could get something to help his recovery.  We looked at shirts and video games, but since he just received some amazing games from the neighbourhood get well basket, he wanted to choose something else.  We went into a store and he was inspired!  A place where you could make your own hat???  He looked at some images and knew exactly what he wanted.

Thank you Oma and Opa!

The dragon is perfect for him.  And Awesome - that sums him up.

Next step:  Prosthetic fitting in two weeks.

 

Surgery

The night before the surgery, we wanted to celebrate this foot that has been with Jordan for 12 years.  We took some family pictures of our feet.  We spent many years stretching and working on his foot with physio and massage.  We love those 4 toes.  But it was time for Jordan to move on.

Won't be needing this brace anymore!

Great way to get kids down to the OR

We met with the surgeon who said that he would prefer to attach the heel bone onto the end of the tibia which would provide a strong base to the leg.  He would secure the bones with a rod and treat it as a fracture with a cast for 6-8 weeks.  Of course, it would depend what he saw during the surgery.  He confirmed again that this was the best option for Jordan, which was very reassuring to hear since we still had the option to turn and run.  What was most incredible was how our 12 year old son hugged us and walked right through those doors without a glance back.  He was ready.  We were overcome with pride and amazement at his grown up courage.

After the 3 hour surgery, the doctor met with us and said that everything went well.  He was surprised to see that Jordan didn't have a proper ankle joint and was missing the heel bone, so they kept the heel pad and no cast was required.  I wanted to know what would've happened if we went with the 6 month leg lengthening option and he said it would never have worked!  The doctor confirmed that it would have been extremely painful and would have pulled on the foot so eventually, Jordan would've walked on the outside of the foot.  Another confirmation of our decision!  

I will not lie.  Even though we were comfortable with our decision, nothing can prepare a parent to see the bandages for the first time, or our son, in his post-surgery haze, lifting his leg and looking at his leg for the first time.

This picture was taken when we got to our room and he was was feeling good.  They used a nerve blocker which lasted for 12-16 hours.  The surgeon saw him the next morning at 8am when he was feeling good.  They recommended we get down to physio, pass the crutches test and go home with Advil and Tylenol.

I put the brakes on and refused to go, understanding that the nerve blockers and anesthetic meds were about to wear off and we didn't know what to expect.   Sure enough, it took two long days to get the pain under control.  On Day 3, Jordan was Face Timing his friends, and says, "Hey, wanna see my nub, nub nub?"  On day 5, he was ready to leave the room so we zoomed to the cafeteria in Jordan style, taking the ramps at high speed and scaring the nice hospital people with some wheelchair spins.

"I'm so happy to go home!"

 We left the hospital today. We anticipate 4-6 weeks of healing and hopefully he'll be back in school next week.  A fitting for the prosthetic is scheduled for the end of February.  We are so grateful for the fantastic nurses and doctors who took good care of Jordan, who listened to us and helped us through this past week.  We are so thankful for all the thoughts, prayers, hugs, calls, emails, texts, Facebook messages and visits!  We are so lucky to be surrounded by love. 

Once Upon a Time

I want to tell you the story about where it all began with Jordan.  It seems like yesterday when he was born.  I don’t want it to seem like I did anything in the birth of our son and I certainly will not tell Lori’s birth story, but here are the Coles notes…Lori was incredibly strong, some things happened that I could never do and Jordan was here.

I actually had the honour of catching him along with the midwives.  That was possibly the most accelerating, scary and proud moments of my life since the birth of my beautiful daughter.  What happened next is something that I can’t explain to this day.  The first thing I did was pull his leg aside to see if I had a boy or a girl!  I didn’t really care, I would have been fine either way and I certainly did not need to know at that moment!  You will be happy to know that my stupid move was immediately followed by a midwife slapping my hand a way, looking me straight in the eye and saying, “how about we get him breathing first!”   Good plan I thought, but also, haha you just told me had a little boy, woohoo!!!  The next thing I saw was this little wrinkle between his eyes and he looked mad about being out.  I continued to see that wrinkle every time he got mad at me for the next 12 years!

The amazing thing to me now, was that the first 2 things I saw had nothing to do with the fact that his foot was twisted up against his leg, he had 2 webbed fingers and he had only 4 fingers and 4 toes on the right side of his body.  Later, I looked at his body differences with my mother in law and new something would have to be done.  I was worried about the unknown and I wanted to know what I should do, but it didn’t need to be done right then.  I just knew that at this moment (because this is the next thing I saw) both mother and baby were fine resting in our bed in our home and it felt great. 

Looking back now it is very strange that we had Jordan at home but when he was 2 days old we were in the hospital, not for his birth, but to start this medical journey with him.  The next year was filled with hospital visits and castings to start the many attempts of straightening his foot.  We fell in love with Jordan the moment we saw him, but we also fell in love with his body exactly the way it was.  It became normal to all of us.  His sister didn’t even seem to notice that it was strange that her brother always had casts or the fact that his hands and feet were different than her own.  

Jordan was unstoppable even then.  As soon as he could crawl he was pulling himself up on the handles of our cabinets to get to the counter dragging his casted leg behind him.  He had to work harder and do more to get where he wanted to go.  Now he has made a decision that I know most of us feel is impossible to make, but it is just one more hard thing he has to do to get where he wants to go.

Upcoming Surgery

 The intention of this blog is to share a very personal journey of strength, courage and determination.  This is outside of my comfort zone since I prefer to keep personal matters private to protect those I love.  My hope is that in sharing our story, we will inform our family and friends of each step we take and ask that you continue to carry Jordan in your thoughts and prayers.

(picture courtesy of Ginger Snaps!)

Jordan is 12yrs old.  He is a healthy boy/monkey/ninja and sometimes, a pirate.  He is very active, smart and so much fun.  His brace is so much a part of him that we often forget it is there.  We have joked that his brace has slowed him down just enough to keep him safe.

He was born with a club foot and a leg length difference.  At birth the difference was 2cm.  Now, its 4cm and expected to be 8cm when he's fully grown.  He has had 2 surgeries on his foot and leg and more treatment was required at this time.  We have been discussing options with his doctor for a year and the one that was recommended was to lengthen the short leg.  We went to Shriners Hospital in Montreal to learn more of this procedure.
http://www.shrinershospitalsforchildren.org/CareAndTreatment/Orthopaedics/LimbLengtheningSurgery

This 6 month procedure would lengthen the leg, but our concern is that the muscles and tendons on this leg are smaller and more tight so even though the leg will lengthen, would his foot be able to sit flat on the ground?  They did not know.  This procedure would have to be repeated when he is 18-20yrs old, again a 6 month procedure.  Our concerns were not only the physical effects of this procedure, but the mental, emotional and social issues as well. And after both of these leg lengthening session, if the tendons are too tight and the foot can't be flat on the ground, amputation of the foot would be the final option.

The other option was to shorten the other leg by using lasers to create scar tissue on the growth plates around his knee to slow down the growth of this leg and allow the other leg to catch up.  We did not want to do surgery on a healthy leg, and most importantly, his main support.

The third option was a prosthetic.  Removal of his foot and allowing all the leg lengthening to occur in the prosthetic.  This was not presented as an option.  We inquired about this and asked, "could a prosthetic allow him to be more athletic than he is now?"

Here is an image that shows how much smaller his right foot is to his left.  It's a cutie

Leg length difference 

The answer was, "Yes, a prosthetic would allow Jordan to do more than he is now.  He could run further, play any sport he wants to and it would allow him to have a more 'normal' childhood." 

All of our discussions with the doctor were with Jordan.  He heard all the options with us.  We looked at him and asked what he wanted.  Without hesitation, he said, "A prosthetic, preferably a spring!" (as in a springy spring)

Jordan is in his second year of playing sledge hockey and loves it!  He has friends who have prosthetics and he sees all that they can do.  We have done our homework, talked to Rehabilitation Centre for Children, spoke to youth who have grown up with prosthetics, looked at all the options and Jordan is ready for this.  The surgery date was booked for April, 2014, and on New Year's Eve, we received a call that the date needed to be changed to either January 23rd, or the end of August.

Jordan chose January 23rd.  He has decided that this is his best option and is ready.  We are trying to catch up.  His big sister Naomi is concerned for him and is finding this decision difficult.  But we have all agreed to see this as a door opening for him.  His spine is beginning to grow curvy to compensate for the leg length difference, so the timing is good to even out the legs before his teenage growth spurt.  We are thankful that his school is ready to support this journey and that he can figure out walking again in this small school family before highschool.

Jordan mentioned that he feels that this is his second chance.  We don't understand the pain he feels or his frustration from not being able to keep up with his friends and cousins.  He has chosen this journey and we will walk with him.

We are so blessed to be surrounded by support.  We will keep you informed of Jordan's Journey and we will let you walk with us.

(photo courtesy of Ginger Snaps!)