Teen Scoliosis Warrior Halo Traction & Fusion
My name is Elesha Lake. I am wife to Don, and mom to 13 year old Syrah. I homeschool our daughter, and Don is the parts manager at a local vehicle dealership.
As a family, our go-to activity is hiking and exploring. We love the outdoors and we love wildlife. We often find ourselves navigating through thick brush, climbing high for a better vantage point, and enjoying the wildlife we encounter. Don and Syrah fish together, Syrah and I are creative & artsy together. We also enjoy movie watching, Mario Kart racing on the switch, board games, and card games.
Don is the most kind and innovative person I have ever known. He is a hard worker, a patient leader, and has graciously supported my desire to be a homeschooling mom even though times can be tough for single income homes. He can swap a motor, build a kitchen, and win every time playing Chess. I don’t think a day goes by that he doesn’t randomly burst into song and/or dance! Going on 17 years together and he still makes me smile. He can do it all. And he does do it all.
Syrah is compassionate, witty, and intelligent. Her giggle melts my heart and her sensitive nature is unmatched. She adores animals, enjoys drawing, plays piano, and excels academically. Her limitless curiosity for our universe is incredible. She also has a knack for asking tough questions that could potentially put us in existential crisis! She is always reading. Always. Her first novel was the Trumpet of the Swan at age 6, and she hasn’t stopped turning pages since. Syrah is always thinking. She comes to conclusions that escape me. Her character, personality, strengths, and everything in between that make her the wonderful person she is, would be impossible to describe in a single paragraph.
And me, I love to learn and create, and take care of my family. I’m a trivia buff, I enjoy painting on canvas, and I purpose to find the good in everything. I also like to think I’m a wildlife photographer; although amateur and hobby should also be in that description.
I’m not exactly sure what the appropriate transition from the introduction is; ask you for money and then explain why, or give you the backstory and then ask for help.
.... June 2018, Syrah was getting ready for her year end piano recital. She chose a pretty pastel dress specifically for this occasion. I checked her hair, grabbed her cardigan, and noticed some horrible posture from my tween girl. I told her to stand up straight, and she claimed she was. Something was clearly wrong with her right shoulder. It stuck off her body like it was broken. We were all a little shaken up at what we were seeing. She was in a swim suit the day before and her shoulder was intact then. Surprisingly, she wasn’t experiencing pain and she could move around fine.
We saw our family physician and had X-rays done. To our relief, the diagnosis was a winged scapula. Likely from swimming. Syrah was a fish, if there was an open pool, she was in it. And during the summer, she spent hours every single day at the outdoor pool. But she stayed active so a winged scapula was nothing to worry about.
A few months later I brought her back to our family physician as it seemed to be getting worse. I figured we needed to have physio therapy involved. Upon examining Syrah’s back, we were immediately referred to a local orthopaedic surgeon for consultation.
February 2019, and the results of a new set of X-rays are a much different diagnosis. The orthopaedic surgeon said Syrah was a candidate for spinal surgery at the Children’s hospital. She had developed scoliosis and the curve of her spine was over 45 degrees. 57 actually.
She was referred to Alberta Children’s Hospital and we were given a 10-12 month wait time. During this time, the curve of her spine was worsening and it was visible. She appeared to walk with a limp, clothing wasn’t fitting properly, she became increasingly clumsier, she was easily out-winded, she complained everyday of back pain, and for some time we could hear a squeak when she breathed. I wanted to be patient with the process, but I was also growing increasingly anxious because of the progression I was seeing. At the 10 month mark I started to push. I insisted more X-rays be sent to the surgeon at ACH because the ball was not rolling, so to speak. I needed to remind someone somewhere about Syrah. New X-rays. One week later an appointment was made at ACH. One week later we were sitting in a room waiting to meet the surgeon.
Nothing, and I mean nothing, could have prepared me for this 2 hour time period.
We were prepared for surgery. We had a lot of time to learn to be okay with this fact. And really, what could be worse than someone operating on my child’s spine? Well, let me tell you.
In one year, her thoracic spinal curve went from 57 degrees to 94 degrees. Typical progression is 1-2 degrees a year. Her spine is also twisting (think of a corkscrew). Her lung capacity is lessening as the curve continues on its bent path. Her case is so severe that the surgeon’s typical wait time is one year but he wants her in 3-6 months, and another surgeon will be involved as well.
I can’t even begin to articulate the mess of thoughts that bombarded us.
She will have so many scars, how does a new teenager handle all of this, how will she shower, will she be able to handle the pain, when can she go outside, how will she sleep, its such a long recovery time, how do we tell our extended family, I need to hold it together but I can already feel myself falling apart, I need to reassure Syrah it will be okay but I also need her to feel what she’s feeling and validate her, can my husband and I handle this, why did they let this go for a year, there’s so many risks, blood transfusion, bone grafts ... and signing consent requires a shocking amount of courage.
So much to think and worry and wonder and question. And even though we already knew surgery would have to happen, actually sitting with the surgeon; our reality became frightening. Uncertain and too much to comprehend.
I’ve never been so quiet as during that appointment, but I couldn’t find words. And I find myself now unsure of the right words.
Have I summed up our story well? Have I conveyed the level of emotion that I have heightened inside? Have I stirred your heart?
I’m not too sure. And so I cling to hope. Hope that aside from my words, you would be willing to help a small family.
I feel ... foolish for even considering an attempt to reach the multitudes ... but our need is great. It is beyond saving from a couple pay cheques, it is beyond asking a family member for help, it is beyond a small favor.
When we leave the hospital, there will be numerous follow ups that are 3 hours from our home, and therapies that our health coverage barely touches, if at all. Spinal fusion recovery is 12 months.
Foreseeable needs ...
>Syrah will need some new clothing. Being in the halo will require tops that zip or button up the front.
>Fuel and parking for pre-op appointments, while there and for follow ups.
>Lost pay for days Don will be required to take off work
>Daily food costs
>RMH costs
>Medication
>Physio-therapy as well as any other therapies that can help her or are required post spinal fusion for the 12 month recovery time frame. This could include and is not limited to; leisure centre pass for the pool and walking track, physio-therapy, Yoga or Pilates classes, art therapy, any exercise equipment she could benefit from having at home, any medical equipment that may be required to purchase or rent (shower stool, brace etc)
Our goal is $25,000
For anyone who gives any amount, thank you. Thank you for easing this financial burden so our focus can be on Syrah. Thank you for taking care of us.
And if you’re reading this,
please share this page. On any social media, or through email; we all know the power of the internet. Thank you for sharing our story.