Ameliya was like most toddlers; active, rambunctious, full of life, and full of sass. She loved going to the park and climbing the rock wall to get to the slide. Loved soccer, swimming, hockey and gymnastics! She had just started her first dance class
at the end of September 2016 and absolutely loved it! The second week of her dance class we unfortunately had to cancel as Ameliya had come down with a respiratory infection after playing with her cousins that weekend prior, who were also just getting over
being sick themselves. Her 8-month-old baby sister and I also got sick, but we all faught it off as per usual.
Ameliya was feeling well enough by the next Saturday (October 1st, 2016), that she went to her Saturday gymnastics class with her dad. Following
class they walked down to the local street festival where Ameliya enjoyed a snack and dancing in the streets. Everything seemed completely fine. That evening before supper, we noticed that Ameliya was limping on her right leg. I asked her dad if anything had
happened at gymnastics, and he said "no". We assumed Ameliya had stepped on one of the 500 toys on the floor and she would be fine soon after.
The next day when Ameliya woke up, she was still limping, but she was now falling every 4-5 steps. She kept insisting
she was okay, but when she went to walk downstairs holding onto her dads hand, her right leg gave out from underneath of her and she fell a couple steps onto her knees. Unfortunately because of Ameliya's age, she couldn't articulate exactly how she was feeling.
We figured something had to have happened at gymnastics, so we tried to convince Ameliya to lay on the couch while we wrapped her ankle and knee (not knowing which was the problem). Of course, trying to keep a toddler sitting is basically impossible. It was
a long day and I told my husband I would get her into the chiropractor first thing Monday morning.
Before GBS
Monday Morning comes around and Ameliya can no longer put any weight on her right leg. I get her into the chiropractor where he doesn't feel anything wrong, but thinks she might have a sprained ligament. Told us to just keep her off of it and ice it, with
pain meds and bring her back in, in a couple days.
Before GBS
By the time my husband Luke got home that night, Ameliya could no longer crawl - she would try, but would drag her right leg behind her. I kept saying, "It almost like she can't feel it, like it's paralyzed"
- not even thinking that was in the realm of possibilities. At that point we knew it was something more and took her into our local emergency room where we met with her pediatrician. Her first thought was a toddler fracture, and ordered x-rays. I remember
sitting there crying thinking, "how could I have not known my daughter had a fracture"?? X-rays came back clean. They then wanted to take blood work to rule out any infections. Once again, Blood work came back clean. Doctor told us she must have just twisted
something while at gymnastics, and to have her stay off of it and continue with the pain meds.
Tuesday - Ameliya can't stand or walk at all and basically sleeps all day long. This child hasn't taken a nap since she was 15 months old, so this was extremely odd for her. I convinced myself we needed to see another doctor, and I packed both girls up
with my mom and went to CHEO (Children's Hospital of Eastern Ontario). There, they diagnosed her with Transient Synovitus (a common hip problem in young children, which usually resolves itself in a couple weeks). As scary as that is, I was relieved to know
that she was going to be okay.
Wednesday - We had a follow up with her paediatrician at the hospital, who confirmed diagnosis of transient synovitus. Said it could be another 10-14 days before we see any improvement and to just let her rest. That wasn't a problem, the girl was sleeping
all day long and had zero amount of energy to do anything. She would be sitting on the floor playing and a minute later was laying on the floor sleeping.
At this point I started googling symptoms (don't ever do that), and things like Leukemia started to pop
up. I lost it. I had developed post-partum anxiety after giving birth to Ameliya and had always been anxious when it came to her health. I wouldn't even let my husband drive in the vehicle alone with her for fear something would happen and I would never see
her again. I needed to have complete control over Ameliya at all times - it was exhausting. At this point, I had no control over her and what was happening. She was fading before my very eyes and there was nothing I could do.
Thursday - I went to sit Ameliya up in bed and she fell backwards. She had done this before just playing with me, so I just scooped her up and took her to the couch where she was been laying for the last couple of days. After she ate her breakfast she
asked to get down onto the floor to play with her sister. I sat her down and she fell over into the toys. It upsets me now thinking that I was actually upset with her at that moment...thinking she was playing and being silly. It's hard going back to that week
and not wanting to blame yourself for everything, or looking at something and thinking you should have done something else. I called her pediatrician who told me that it can sometimes get worse before it gets better. That night in the tub I noticed that she
was falling over to her left side - but it was her right hip?? So why was this now affecting her left side? Being late at night and her baby sister already in bed, I put Ameliya to bed knowing I would check things out in the morning and if she needed to go
back to hospital, I would take her then.
Friday morning Ameliya wakes up, now not able to sit up at all. I go to give her a spoon to eat her yogurt and she drops the spoon, unable to hold it in her right hand. I pick her up and her head starts to bobble like a bobble-head. She could no longer
support her head on her neck. Obviously terrified I try to put Ameliya in the van to take her back to CHEO. I know at this point that this is not Transient Synovitus and I need to get her to the hospital ASAP. Ameliya was still rear-facing in her car seat
at that point and when I tried to put her in and drive, she screamed so loud, I had to turn around and go back home before we had even gotten off our road. How was I going to get her to the hospital? My anxiety was overwhelming me at this point, but I knew
I needed to figure this out. I found the manual, and turned her car seat forward facing - I was hoping that if she could watch the movie on the DVD player screen that it could keep her calm for the hour drive to CHEO and maybe forward facing would cause less
pressure on her hips.
I met my husband half way there and picked him up - I still remember the look on his face when he looked back at Ameliya and saw her head sitting on her shoulder. With everything that was going on, she still had a huge smile on her face!
They got us into the emergency room quickly and the ER doctor knew right away that this was now neurological. He had a neurologist come down to explain what they thought it might be - Transverse Demyelination. She wouldn't go into any detail, but said
they would be admitting us that night to run some extra tests, including a CT scan, MRI with contrasts and a Spinal Tap. My husband and 8-month-old stayed the night at the hotel across from the hospital, while I stayed with Ameliya, up all night doing tests,
being interviewed, repeating my story 100 times, and just crying while Ameliya continued to sleep.
The next morning we finally got some answers due to the results from the spinal tap. Ameliya was then diagnosed with Guillain-Barre syndrome, with a thought
of acute motor axonal neuropathy (AMAN) variant. They explained that chances are, this developed after she had the respiratory infection a couple weeks prior. Her immune system went into overdrive and started to attach her peripheral nervous system - basically,
she was now paralyzed from the neck down. They said that while there is no cure, there is a treatment of IVIG, to essentially give clean blood in the hopes that it stops whatever is happening to cause the paralysis, and that physiotherapy would be very important
in her recovery, but that with young children, there is a much higher chance of full recovery. My husband asked when we would be able to leave hospital - we were told in 3-7 days; both thinking that meant she was going to walk out of there in a week. Boy,
were we wrong.
We spent the next 28 days in hospital, with Ameliya receiving 2 days of IVIG treatment. She responded quickly and fortunately didn't get any worse! We had physio everyday, which Ameliya hated in the beginning, but soon looked forward to going to the "gym"
and getting out of her room. We also saw the occupational therapist a few times, but because Ameliya's right arm had only just become affected on that friday, and her left arm was just unaffected - we were discharged from OT rather quickly as her motor skills
came back soon after the IV was taken out of her right arm and she was able to start moving it again. By the time we left 28 days later, Ameliya was able to sit up on her own. She was still weak in the torso should she lean over too far, and she would use
her left arm to lift her right arm - but we could see improvements! She was cast and fitted for a KAFO (knee-ankle-foot orthotic) and was starting to be able to stand up with one of us holding majority of her weight. We were released a few days before Halloween,
and when asked what Ameliya wanted to be, we thought a disney princess, she said a doctor :) She knew we were in for the long haul, but didn't really know how long.
Now, 6 months later, Ameliya is about to turn 3, and she is getting stronger everyday. Her neck and torso strength are almost back to normal. Her right arm is fully strengthened and she can lift if above her head with no problem. Her left leg has made
a huge recovery recently, with her quad and hamstrings coming back. She had to be fit for a second brace, this time only an AFO, as she was hyperextending her knee on the left leg when she would use it. The brace prevented hyperextension, and once using it,
her strength came back in droves! She's gone from an army crawl, to a bum scoot, to slowly crawling, and can now crawl faster than we can keep up with her. Her 1-year-old sister has just started to walk, and you can see Ameliya wants to do it with her so bad!
She's now able to walk with assistance using both braces and holding onto one of our hands.
We have moments where we feel angry, sad, frustrated and depressed, but we look back at how far she's come in 6 months, and are hopeful that in the next 6 months, she'll
be close to fully recovered! She's looking forward to being Princess Poppy from Trolls in her dance recital in June (Dance Therapy has been a godsend), and is excited for summer so she can start swimming outside!
Everyday is a challenge, but everyday we see
something new with Ameliya. I often ask myself, WHY, WHY HER? But I believe that this happened to Ameliya for a reason...what that reason is, I don't know yet. All I know is that our situation has shown that Ameliya is an extraordinary child who is here to
teach all of us what true strength and determination really looks like <3
