Just Your Average Toddler
Julia, prior to the spinal cord injury, was a typically developing toddler, walking, running, playing everywhere. We were living in a house we had just built, our dream home within our means, and we didn’t think anything of all the stairs in the house. She loved them in fact! Julia loved dancing, and the basketball hoop in the yard, like any other 17 month old child.
How it Happened
It was like any other night, so we thought, Julia went to bed just fine and we expected nothing other than for her to sleep right through the night, as she’d pretty much always done since a baby. I remember it was a Wednesday evening. Throughout the overnight period, we could hear her fussing a bit, which was somewhat unusual but being that she was only 17 months old, we chalked it up to typical behavior for a toddler. Maybe she was having a bad dream – who knows?
We got up Thursday morning, and went about our day like usual. Ryan had gone to work early, I (Melissa) got up and got ready for work as this was a day Julia was to go to a friend’s house (we shared a nanny for Julia went 2 days per week). I went in to get Julia up for the day, and immediately something was off. Julia was lethargic, overly sleepy, kind of whiny, clingy, just very unusual behavior for her. Normally Julia would be awake and ready to face the day with her typical sass.
I, thinking that perhaps she was coming down with something such as possibly pneumonia, decided to let her go back to sleep for a bit and would shortly thereafter make a call to the Nurses hotline (8-11) for advice. In the meantime I made arrangements at work to stay home for that day, thinking I’d likely be back the following day, and could catch up on whatever work I was about to miss. It was a really busy time of year at the hotel – the midst of conference season – plus we were about to go through a major systems changeover – so it really was horrible timing to be missing work. Oh if I’d only known what was about to hit us.
Mid-morning, I called the Nurses hotline and explained Julia’s symptoms to the nurse on the other end of the line. Of course without visually seeing Julia to observe her behavior and symptoms, she could only really say that it would be important to have Julia seen by a doctor very soon. So once off the phone, I got Julia up and out of her crib. Trying to stand her up was useless, she just crumpled to the floor. It was like she just had no energy or strength whatsoever. Even to sit up was difficult for Julia – she had to lean against the couch. She had no appetite, did not want to drink anything, just wanted to “lay” and cuddle and sleep.
Of course being an average person without knowledge of spinal cord injuries (I had never known anyone with one, nor had any other reason to be up to speed on the subject) I took Julia to our doctor and hoped they would know what was going on. Since I had thought initially that perhaps a severe case of pneumonia was about to hit, I suggested a chest x-ray (which later came back as negative). Doc sent us home, suggested we alternate Tylenol and Advil should Julia be in any discomfort, and asked us to return the following day.
On Friday, I had to go to work (the systems conversion and busy hotel were calling) so Ryan stayed home with Julia. The plan was to take Julia to the doc around noon, and I would meet them there. Off we went and this time saw both our doctor and the other GP who shared the practice. Both had no ideas whatsoever as to what could be the matter with Julia. Nothing had improved from the day before. They once again sent us on our way, with the Tylenol/Advil suggestion, letting us know that one of them would actually be on call at the hospital that weekend, should anything drastic come up. Ryan took Julia home, and I went back to work that afternoon.
Once I was home from work and we had dinner, we were talking about our doctor visit that day, and decided that we wanted to make EXTRA sure that we had been clear on the fact Julia had not moved her legs since waking up Thursday morning. So I called the doc (she told us she was on call so I was able to reach her via the hospital switchboard) and explained the reason for my call. I even asked about a spinal issue – perhaps meningitis? – and she quickly said that was not on the radar because of Julia’s symptoms. OK – so where does this leave us? I asked if we could bring her in to see the pediatrician on call at the hospital, and the doctor agreed, based on the fact it would make us feel better.
So off we went to KGH, sometime around 7/8pm. After seeing the 4th year resident and explaining everything all over again, we finally saw the pediatrician on call, for all of about 10 minutes. She asked a couple of questions, did not even try to get Julia to stand up or walk – and I didn’t question that because again, I knew nothing about the spinal cord and what potentially could be going on. Said pediatrician sent us on our way, AGAIN letting us know we could give Julia pain meds to ease any discomfort, and told us that unless things were getting worse, to bring her back Sunday (remember this is Friday night).
So Saturday goes by, we felt like, if anything, things may be improving slightly, because Julia’s appetite was starting to come back, and she was more willing to drink fluids as well. Still no movement from the waist down, and still rather lethargic.
Sunday morning comes, and as per the suggestion, we wait until noon to bring her in (mornings are busy with rounds and such) so off we go, back to the hospital. Thank goodness for seeing a different pediatrician that day – almost immediately he suspected something very serious was going on, and arranged for some blood work and an air ambulance down to BC Children’s Hospital in Vancouver. Now we are scared. This doc was thinking Julia could have what’s called Guillain-Barré Syndrome, which can result in numbness in the limbs.
Off we went to Vancouver – we all squeezed on to the air ambulance even though generally only 1 parent is allowed to go. They agreed to let both of us on, and my parents thankfully were able to drive down that evening, and bring us our vehicle along with some clothes and toiletries.
Once at BCCH they immediately ordered a MRI and once that was complete, we got the news that would completely change our lives. Julia had a mass that was compressing her spinal cord. At that time, the team of neurosurgeons did now know what the mass was – it could have been a tumor, an infection, or simply a bleed, and fortunately (if you can pick out a silver lining in this scenario) the mass turned out to be a blood clot. They scheduled the surgery for early the next day (it was now approaching 1 AM Monday morning) so it was decided that surgery would take place Monday as soon as the team of the best neurosurgeons were ready to go. They ended up starting a bit earlier than planned, around 9:30 am. I helped to wheel Julia down to the OR and said goodbye and that we’d see her in a little while. It was very emotional and we were absolutely terrified about what the surgery would be like, and what news would follow.
Good news when the surgery wrapped up – we were called back to the ICU to speak with the neurosurgeon and he explained they were able to remove the blood clot with no complications. And now it was time to wait to see what kind of mobility and function Julia would get back in her lower body. After staying at BCCH until Saturday, we were discharged and the plan was to visit Sunny Hill Health Center on Monday, to figure out the next steps.
The following week, Monday to Thursday, we visited Sunny Hill daily for a few physical therapy appointments and to meet with the doctor there. Many children spend months at Sunny Hill during the acute phase of their “injury” however we were only given 4 days, and then sent back home to Kelowna to figure out what was next.
Adjusting to Life with a Spinal Cord injury
One thing that we were able to sort out while at Sunny Hill, was that Julia was going to be eligible for the At Home Program, which is a provincial government funding program for children with special needs. At the time we didn’t know how helpful this AHP would be to help with expenses.
After being given very little information on what our next steps were from a recovery standpoint, one thing we did find out about was to contact the local Children’s Development Center. On Friday morning we drove there and met Kim, who would be our physical therapist (who I now consider to be a good friend), and it was decided that we would see her once per week for an hour of PT.
Being very focused on Julia’s recovery from the get go, we felt like 1 hour per week wasn’t enough, I began to research private PTs who we could work with for additional sessions each week. These would be paid out of pocket as would many things over the years to come.
Months went by and during this time we were always researching other ways to encourage recovery from a spinal cord injury. We ended up, after about 7 months of local PT in our home working on very basic core strength exercises, finding a facility in Vancouver called First Steps. This place was a spinal cord rehab gym and while they mainly worked with adults with SCI, the team at First Steps was able to adapt some of the equipment for Julia, who was only 2 years old at the time.
Julia started attending First Steps 4 days per week for 2 hours each session. This meant that she and I drove down to Vancouver every Monday morning, and back to Kelowna every Thursday afternoon. Julia was at First Steps for five and a half months altogether – May to October – at which time we wanted to set up a gym in our home to avoid the travels during the winter months.
During the summer spent at First Steps, we had been researching about a facility in Baltimore called Kennedy Krieger Institute, which was geared towards pediatric spinal cord rehab. Wow – this was exactly what we needed! We were finally able to set-up a visit there, which took place in mid September 2016. We spent 2 weeks there, and I soaked in every word. I wanted to learn everything I could about how to set-up the home gym, what equipment I needed, and what sort of help I would need to be able to actually facilitate the therapies they were recommending.
After the 2 weeks was up, we returned home feeling excited. We acquired the equipment, I sourced out some volunteers and we set-up what Julia needed in our home. From there, we were able to do therapy every day with Julia – FES biking for 1 hour, treadmill locomotor training for 40 minutes, standing, kneeling or walking with braces and a walker, practicing sitting balance, etc.
Fast Forward to Today
Today we are still very focused on Julia’s therapy and ultimate recovery. While the future is unknown, what we do know, is that activity based therapies like the ones we do for her several days per week, will only help to heal and re-train her spinal cord. The therapies will also help to keep Julia’s body strong and in good shape, and ready for the cure which will hopefully be coming down the pipe in her lifetime. She is now self-motivated to learn how to walk again – she’s in grade 4 this year and is becoming a very independent little lady; however with that drive for independence comes frustration.
Twice per year, Julia visits Kennedy Krieger Institute. The cost for KKI treatment is approximately $8,500 USD per week, plus travel expenses, so we are very grateful that this tournament allows us to make these important trips. Even though we are able to facilitate many of the recommended therapies at home, what we DON’T know is how to adjust the therapies to keep Julia progressing forward with her recovery. In early January we left on an adventure – a very highly anticipated trip to Louisville, Kentucky – to visit a rehab facility called Frazier. This is a 3-month long rehab program that focuses on locomotor training. The cost for the treatment and travel expenses is upwards of $100,000.
There is also still approximately $10,000 to $20,000 in equipment that she needs EACH YEAR which is not covered by any government programs. As she grows, heals, learns and changes, there is always something new she needs.
Thank you for your ongoing support! We couldn’t carry on this journey without all of you!
What We Want
Julia’s ultimate goal is to walk again. She also wants to play sports, have meaningful friendships, thrive at school, live life to the fullest. We want that for her too and it our hope to be able to give her all of those things!
Where The Money Goes
These expenses include treatment costs at Kennedy Krieger Institute ($7,500 USD per week x 3 weeks total per year); various specialized equipment for Julia which may not be covered by government funding; and adaptive sports such as sledge hockey, swimming, horseback riding, basketball, and tennis
What We Have Achieved
Julia has come a long way in her physical recovery and we couldn’t have helped her do this without the annual fundraiser. To date you have helped us raise $228,496 over 7 years and we are so very grateful. We hope to see you there once again!
Regardless of her challenges, Julia is an active young lady!
On the Ice
Bringing out her feisty side on the ice with her peers, sledge hockey has become a favourite for Julia!
At the Farm
Julia has developed a love for horses through her specialized therapeutic riding lessons.
On the Courts
Thanks to specialized programs and wonderful coaches, Julia loves both basketball and tennis.
A mermaid in training, a huge part of Julia’s rehab is in the pool.