Elle’s School Visit

Last Thursday Elle had the opportunity to go into school to visit her classmates and share with them her story about her surgery and recovery.

We were overwhelmed with the outpouring of love and well-wishes from the students and staff alike during our visit.

While we were there we were also surprised with the presentation of a huge basket for the Ref4Rett auction and a check donation for ORSA from the sale of purple popcorn in the month of October.

We couldn’t ask for a better school community –  Elle and our family are truly blessed!

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8th Annual Ref4Rett Event

Last night the 8th Annual Ref4Rett event was held at the Brant Sports Complex and it proved to be another amazing night – with over 480 people in attendance at the Mounties game and over 100 people who participated in our first ever Skate-a-ton.

A special thank you to Todd Wood and the Paris Mounties for allowing us to be a part of their last regular season game!

Thank you to all of those who participated in the Skate-a-ton.  The kids enjoyed being able to skate and chat with the Mounties – there were even a few races on the ice.  This was Elle’s first trip to the arena since her surgery, and she couldn’t get there fast enough.  She loved being able to skate around with her friends – you will notice a smile in every photo!

Thank you to all of our volunteers, without whom, this night wouldn’t have been possible. Thank you to our MC, Andy Thibodeau. Thank you to Cindy Hefferan, from Now & Always, who provided the linens for the hall. Thank to Tanya Taylor from Censational Photo, for capturing the fun.  Thank you to everyone who donated an item to the silent auction, all of those who sponsored someone skating in the Skate-a-ton and to all of our sponsors. The event is truly a culmination of everyone coming together for one cause.

We are so proud to report that this year’s event has raised over $16,000!!!!  All of these funds will be directed towards the Ontario Rett Syndrome Association’s Hope Fund – which is dedicated to Canadian Rett syndrome research.  In the summer of 2020 there will be the first ever Canadian clinical trial for Rett syndrome.  This year we will be requesting that the funds raised at this year’s event be directed to assist families wishing to participate in the trial, in an effort to offset some of the cost associated with a clinical trial.  It is our hope to create accessibility and equity for all those wishing to participate.

Thank you to everyone who came out to support us and celebrate what is always magical night for our family!

One Month Since Surgery

back

One month….today we reflect on one month since Elle’s surgery.   We would be lying if we didn’t admit that the last month has been a bit of a blur.  There has been many sleepless nights, lots of follow up appointments, lots of games of UNO and many, many naps.

Elle’s recovery is going as planned.  Her back is healing nicely and Tylenol seems to manage any discomfort that she may have.  Elle’s biggest challenge has been foot pain.  Foot pain which has kept her up many nights and which makes walking difficult.  The doctor’s have called it neuropathic pain, which can happen after surgery and which should resolve itself over time.   Elle also tires easily and asks to lay down every couple of hours.

Elle’s spirit however, has come through unscathed.   She is motivated to get better.  She walks around the house, and  has just started to do some gentle exercises to strengthen her legs and core.  She often asks to get back to school , to go shopping and to go to the rink to watch her sister play hockey.  Her new line is “my back is all better – I go to Ref4Rett”.  We are hopeful that she will make an appearance, even if for a short time.

We want to thank everyone for all the love and support that we have received.  The thoughts, prayers, well wishes, visits and care packages have helped us all get through this tough time.

Looking forward to seeing those of you who are able to make it to Ref4Rett next Saturday.

8th Annual Ref4Rett Event – February 1st, 2020

Event Details:

  • 5:30 – 7:00 pm – Skate-A-Thon
    • There will be some Paris Mounties players who will be on the ice as well!
  • 7:20 pm – Paris Mounties the Ayr Centennials

**Remember that during all of these events we will also have our signature Silent Auction in the Lafarge Room**

Skate-A-Thon Details:

  • Anyone wishing to participate needs to raise at least $20.
  • Anyone, any age can participate, but you need to be wearing skates to go out on the ice (*provisions available for those requiring accessible access to the ice)
  • Everyone  12 years old and younger need to wear a helmet, regardless of skating proficiency.
  • If you cannot skate, you can still raise money and come to the event.

**All forms for the Skate-a-Thon can be found at https://ref4rett.com/event/

PRIZES

  • Those who raise $50 or more will get a Special Ref4Rett Drawstring Bag.
  • The person who raises the most money will receive a $100 Best Buy Gift card (courtesy of Legends Taphouse & Grill).

 

2020 Poster

 

Surgery a Success

When they say that a picture is worth a thousand words they definitely mean it! After 10 hours of surgery, 2 rods and 26 screws later, Elle’s curve went from 72° to 15°. The result better than what was initially projected.  We are so grateful for the skill and dedication of her surgical team.  We have a long recovery road ahead of us, but couldn’t be happier with the initial result.IMG_20191228_071451_01

Preparing for Surgery

So how do you prepare for the fact that your daughter has to undergo a 10-hour surgery? Something that you have absolutely no control over?  10 hours in which you need to trust the surgeon and the other medical professionals who will be in that operating room.  These are the questions that swirl in our head today as tomorrow Elle undergoes spinal fusion surgery.

When we posted back in October about the surgery, and the feelings we had around what was to come, we thought we had a lot more time before we would have to actually face those fears, but instead we got a month.  A month of feeling more terrified than we have ever felt, a month of planning and organizing, a month of wondering about the ‘what-ifs’, a month of trying to learn every single thing we could about the surgery and recovery.

How bent is her back?  Well at last measure, a week ago, it was at 72 degrees.  What does that really mean?  Well the only way for us to explain is to show you.  With Elle’s permission, we have posted an x-ray picture taken in October 2017 and one December 2, 2019 so that you can see the difference.   We also have posted a picture of Elle’s back as it looks now when she stands to provide a real-life example.

We know that Elle is strong and has overcome a lot of adversity in her life.  We know that we will make it through this, we always do.  But all of that doesn’t take away from the very real terror and uncertainty that tomorrow brings to our family.

Now here we are, with just over 24 hours to go.  There is no turning back.  All we can do is continue to pray and have faith that the surgeon and the other medical professionals in that room will take the best possible care of our little girl.   If you have taken the time to read this post, we would ask that you please join us in whatever way you choose, to hope and pray for our little girl.

7 Years Since Elle’s Diagnosis

elle 2019Today is the 7th anniversary of Elle’s diagnosis and once again a time for us to reflect on the last year and to try to share with you our experience in a few paragraphs. We don’t share a lot and we don’t share very often because we realize that everyone has their own journey and recognize that things could always be worse, but we also know that we need to have a voice and share our journey with others, as this is one of the ways to help raise awareness.  This year, we have also decided that our post will be in Lory’s voice and from her perspective.

Avoidance and Denial…. honestly that’s where I am at when I reflect on where I am on my Rett journey.  If I just take each day as it comes and not think about what’s to come, it makes each day so much easier.  On August 31st, we heard the words that we had hoped to never hear, “Elle needs to have surgery to correct her scoliosis”.  She went from having nearly no curve to 65-degree curve in under two years and despite wearing the back brace for 22 hours a day for the last year, here we are “the point of no return”, as per her doctor.

Of course, as a mother, I reflect on whether we could have done anything more to slow the progression or reverse the curve…as soon as her scoliosis was diagnosed we started with a chiropractor, osteopath, interment massage, daily exercises, but alas, here we are.

When I think about the surgery, the feelings are overwhelming and beyond frightening.  It’s a 10-hour surgery and a very long recovery period.  They are putting rods in my angels back.  Will she wake up afterwards?  When Elle had her tonsils out at 4, she had a really hard time waking up and breathing afterwards- this is terrifying!  How will her pain be afterwards?  Elle has a very high pain tolerance and we often struggle to identify if she’s in pain or where the pain is located. Will she get an infection?  Will she continue to be able to walk after the surgery?  As we listened to the doctor explaining all of the side effects and potential complications, my stomach fell and my heart broke….I wish it could be me instead….but I needed to keep it together.  Both Elle and Paige were in the room listening to the doctor, and I didn’t want them to know how scared I was.  “It will all be okay”, I say with a smile.  Surgery would be within the next year, but consent needed to be signed now so that the process as could begin.  Kevin was in so much denial of the need for surgery that he had me sign the consent forms because maybe that might make it go away.  As I signed the consent, my hand shook, and my heart raced – was I really ready to allow this to happen?  But what choice did I have.  She needs this surgery as the curve continues to get worse and soon likely to begin affecting her organs.

Kevin and I know that Elle completely understands everything we say, and we know that she understands her own body, so when we asked her if she wanted back surgery, she said “yes”, so we knew that we were going down the right road.  While we believe that this will have a positive impact on Elle’s life, and lots of people have this type of surgery, what we also know is that having this surgery as a person with a neurodevelopmental condition puts Elle at increased risk for other complications.

As we walked to the parking garage, Paige held my hand and a tremble began on her lip, she looked up at me with tears in her eyes and said “I don’t want Elle to change.  I don’t want her to stop walking”.  As I gathered her in my arms and fought back my own tears, I told her I understood her fear and that I felt scared too, but that we needed to trust the doctor who is the expert.

While this will be a difficult time for us, we also remember not to lose sight of the amazing moments that we have had in the past year, and how blessed we are.  In November, Elle received her Make-A-Wish trip to Disney.  This was a dream come true experience for Elle, which speaks of often.  Also, in April, we celebrated a milestone birthday for Kevin in Cuba, where we spent a week enjoying some very precious family time.   And in addition to these two big highlights, there are many, many day to day moments that warm our hearts and keep us persevering.

At the crux of our journey has always been our hope and faith, and that has not changed.  We are so blessed for all the good times that we have, it’s just in these moments when we can’t deny that Rett exists in our lives, that makes it hard to always keep it together.

So, when I get asked why we do what we do, it’s because I want there to be a cure.  I don’t want any other family to have to experience the fear, worry and anxiety that we feel.  I don’t want any more individuals with Rett syndrome to have to suffer.  I want a cure and I know that that can only happen by raising awareness and funds for research.

As in previous years, we continue to receive tremendous support from the Paris Mounties (OHA Jr.C).  On February 1st, 2020, we will be hosting the 8th Annual Ref4Rett Event at the Brant Sports Complex in Paris.  This year’s event will feature the last regular season game for the Paris Mounites versus the Ayr Centennials.  We are also going to be having a Skate-A-Thon prior to the game.  More details about the Skate-A-Thon will be shared once confirmed.Along with the great hockey, there will also  be a silent auction.  Our goal this year is to raise $30,000.00 for the Ontario Rett Syndrome Association (O.R.S.A.) and Rett syndrome research in Canada.

As we plan for our event, we are currently looking for donations, sponsors or silent auction items.  If you or someone you know is interested, we have two different sponsorship options available.  Silent Auction Items are also being accepted. Your sponsorship or donation of any amount will help us to realize our goal.  If you are interested please contact us at ref4rett@gmail.com.

To learn more about Rett syndrome and O.R.S.A., you can visit www.rett.ca .