The Faces of Guillain Barré & CIDP 2018: Day 12- Anna- #78

My name is Anna Vincent. I’m from Menifee, CA, I’m 27 years old, and I was diagnosed with GBS on April 23, 1997 at the age of 7. 

I’ve avoided talking about having GBS for YEARS. As a kid it was uncomfortable to talk about. I think mostly because it was confusing to me. I wasn’t entirely sure what was happening, I just knew I wasn’t the same and didn’t like feeling different from other kids. So to avoid answering people’s questions that I didn’t have answers to, and to avoid speaking about this topic that made me feel so different from the rest of the world, I decided I would shut down and ignore anything having to do with GBS. Until recently.

I’ve come to terms with the fact that I had it, it was uncomfortable, it was scary, it was confusing through the eyes of a child, but I’m still here (almost) 21 years later.  I’m walking, talking, I can see with my eyes, I’m a mother to a smart, sassy and funny little 2 year old girl, I’m a wife, an active individual who loves dirtbikes, hiking, kick boxing and self-healing. I’m coming out of my shell 🐢 in hopes that my story can help at least ONE person.

With that being said, I’m going to try to give as much info as I can with what memories I have and the help of my mom, but please bear with my lack of detail, I don’t remember specifics from 7 years old ;)

This is me as a little girl sitting in my wheelchair. I wish I had some more photos with GBS but my mom didn't take many, it made me uncomfortable. 

Two weeks prior to my diagnosis, I had the flu but didn’t entirely recuperate as expected. My body was starting to feel weaker by the day. Walking was beginning to feel more like exercise because it was getting harder to do... I often asked my mom or dad to carry me. Soon my legs began to feel numb and my feet tingled. My knees would give out when I’d walk and sometimes I’d fall down. My speech became slurred, my vision was becoming blurry, my muscles seemed like they suddenly stopped working altogether with no explaination. No one, including my doctor, knew what was happening to me.

It was about the 2nd or 3rd doctors visit when they realized I was progressively getting worse and none of the medications (I don’t recall which ones) were working. I remember hearing the words, “Anna needs to go to the emergency room right away!” come out of my doctors mouth. The next thing I knew my parents and I are being transported by ambulance to the nearby children’s hospital.

In the ER a doctor performed a series of tests on me. He had poked my foot with a pin and I didn’t react, I couldn’t even feel it! He also asked me to lift my arms from my sides and raise them above my head. But when I tried my arms shook uncontrollably and would only raise half way. I was asked to smile as big as I could so I did but my face was not displaying a smile. It wasn’t doing anything, really. I had lost all feeling and muscle from my face down. Eventually I was admitted to the hospital where I had an MRI, blood tests and a lumbar puncture, which would confirm that I had Guillain-Barre Syndrome. 

I had IVIG treatments for 5 days which seemed to help tremendously. I did physical and occupational therapy 5 days a week and little by little my strength was coming back. I went from a wheelchair, to a walker, to leg splints and then my own two unassisted legs. I remember one of my first biggest accomplishments was standing back up by myself after a fall. Before I knew it, I was returning back to school, walking up the steps to my classroom all by myself. By 5th grade, I was on the school volleyball, basketball, and softball teams. It was the little steps that were HUGE milestones. I just wanted to be a “normal” kid again. I wanted to run, swim, ride my bike, and get to play with my friends again. It’s so easy to take walking for granted until you can’t anymore and at the age of 7 I learned to never take my own two legs for granted again. And I haven’t ❤️

This is a current picture of me, my husband and our daughter. 

The Faces of Guillain Barre 2017: Day 24- Caitlyn

What an emotional roller-coaster of a journey we have been on!  

Caitlyn was finally referred to the specialist at the hospital here in Christchurch, New Zealand for her severe eczema early 2014, she was 7 years old. Her specialist Tom was great and we were seeing results. First November 2014 I took Caitlyn to the food and allergy show, where she was lacking energy and wanted to lay down all the time. I struggled to get her to the car and took her to the Dr. He was unsure what was wrong and said it may be a form of childhood arthritis, he was absolutely stumped "come back in a few days if she's not improving"! I booked an appointment with my Dr the following day. By then Caitlyn was complaining of "funny feelings in her feet" and was stomping when she walked... She's a dancer, she does not stomp!! I can not being to explain the fair as a mother seeing your child poorly and no one has answers.  Our Dr had just read an article about GBS days earlier - they've never had anyone through the clinic with this so she was very specific in her tests.  We were referred to the hospital immediately. 

Someone was watching over us this day.  When we arrived at the hospital her specialist Tom was the paediatric Dr on the acute ward. He got her to try and climb on the bed, walk, and reflex tests. The trust she had for him was a blessing as next came the lumbar puncture... still amazes me to this day how brave she was.  The next morning was the MRI and confirmation she had GBS... What the hell is GBS was my first thought! We were told to google, find out as much as we can as we'll need to know how bad this can be, and find support out there.  

Caitlyn was given three doses of immunoglobulin.

She got worse before she got better. Caitlyn ended up having a mild case of GBS.  She spent a week in hospital, had her final term before Christmas off school, and six months of weekly, fortnightly hospital visits. It took over a year before all her reflexes were back and her energy levels were back to normal.  She would still get tired quickly and sore, but this was getting better. 

We are unsure how she got GBS, they said it may have been due to a tummy bug.

30th October 2016, Caitlyn woke with sore feet and legs! I tried not to panic and asked her all the questions the specialists did. I took her to the hospital where she was admitted for observation.  Going through all the reflex tests again, I had my fingers crossed we were not going down this path again! Sadly she is 6% of those diagnosed with recurrence GBS!  Again it was a mild case.  No treatment was given and we spent the next 6 months with hospital visits and tests.  

Fast forward April 2017... Caitlyn is doing hiphop lessons, playing football and she even raced in a mountain bike relay.  She gives everything 100%, she does however get tired and crashes quickly! Her feet aren't 100% recovered with the jerk reflexes and feeling of temperature, but you would never know the journey she has been on. 

This is Caitlyn O'Regan, 9 years old, from Christchurch New Zealand, and she's our GBS warrior ❤

The Faces of Guillain Barre 2017: Day 16, Part 2- Laura

To be honest, I don't remember all that much about having GBS. I was barely two years old when I was diagnosed.  What I know about the acute phase has been pieced together from my parents retelling of the trauma we all went through and some random memories.  Most of all, I want people to know that GBS made me who I am.  I don't have counterfactual evidence of who I might have been without it, and sometimes I sure as heck wish it hadn't been me.  But it is.  You choose how you live.

I was diagnosed in May 1982 at about 24 months old.  I was lucky that my pediatrician had seen a case in his residency and rushed me to the hospital in his personal car as soon as a I dropped to the floor in his office.  I was in ICU, on a ventilator, at Children's Hospital Los Angeles for a month. In a bedside manner only a neurologist could have, my parents were told that if I didn't move my feet in the next week, I would neverwalk again. I did move my feet again.  I stayed in the hospital for three more months after being able to breathe on my own. I remember the tilt board, which I hated.  I remember being bribed with Fruit Loops to do my therapy. But that is the extent of my hospital memories.  

As I grew up, it was apparent that I was going to have significant issues.  I had severe foot drop. I spent a lot of time in casts trying to help my bones grow and strengthen.  I wore AFOs. And not the cute ones they have now.  Just recently I admired a child's super hero themed AFOs from afar. 

My first surgery was just before I turned 6 years old.  They tried soft tissue surgeries first.  I am so grateful I went to a school where there were many many students with disabilities, so I never felt out of place - whether I was in a wheelchair or just in AFOs.  In eigth grade, my foot deformity was so severe that we opted to have my right left ankle fused.  It was by far the best decision my parents made.  When I was 21 I had the right ankle fused.  After a series of nonunion and other issues both ankles are now finally fused.  Sixteen surgeries over the past 35 years have given me the stability to appear as if I am not disabled. I still suffer from significant neurological pain, my fatigues is catching up to me more and more as a i grow older and my balance is...well I'm always tripping on something.

I didn't realize that I had a disability until I started competing for the U.S. Paralympic team in cycling.  Yes, cycling. I have poor balance and weak legs.  It only seems reasonable that would be the sport I chose.  After seeing an international doctor who ranked me as nearly the most disabled category of racers (my main competitor only raced with one leg, no prosethtic), I realized that I do face significant challenges.  But I am grateful that this is the only life I know. I was on the varsity swim team in high school.   I have raced bicycles for the United States.  I graduated from the University of Notre Dame (snow, ice, AFOs and balance issues go well together!). I have two masters degrees, I was a teacher for six years and I have a job that I love in education.  I have raised 13 guide dog puppies for visually impaired people.  I have a husband who loves me and who I would have never found if it wasn't for my disability.  

Every day I wake up knowing that walking probably won't be the only way I get around in my life.   But for those of you who are struggling with GBS now or even if you had it a long time ago, take that perseverance and faith in yourself - use it to do the things that others would never dream of doing. If your child had GBS, please raise them to believe that they are strong a and brave because of their GBS, not in spite of it.  

The Faces of Guillain Barre 2017: Day 11, Part 2- Autumn

Autumn was normally a healthy, happy little 2 year old child. Dancing, playing, keeping up with her sisters. On this day 2 years ago life was normal. Well however a normal, crazy, busy life of a family of six can be. But this particular morning something was not quite right, for some reason she could not stand or walk on her own.  

The day before Autumn got sick. 

On day 1 we brought Autumn to the hospital Emergency. I worried maybe she had menningitis. While at the hospital her voice began to sound a little hoarse. Doctors thought maybe she had a virus. They gave us a nebulizer with some meds and that evening sent us home. The next morning she was weak, could hardly raise an arm and she was going downhill fast. We took her back.

With no recent vaccination or injury, no previous signs of illness doctors were stumped. blood, saliva, x-rays taken and nothing to blame yet. Autumn was admitted and in less than 48 hours on her first overnight stay Autumn's nurse called a code blue. Autumn was rushed to ICU and intubated.

 

Autumn in ICU

 She now has pneumonia. Her heart rate is not stable. She gets a nerve conduction test and spinal tap. Because the cause of GBS is unknown and hard to diagnose, all other tests are like a process of elimination. The spinal tap showed high protiens in her spinal fluid and the nerve conduction test showed no signal to her hands and feet by electrical stimulation. I think because a virus was suspected, the infectious diseases unit came in. Donned in all yellow clothing covers, face masks, gloves. Asking all kinds of questions all the while I thought is this real? We also had to change and sanitize each time in and out of autumns room after that. 

 On day 4 she is diagnosed with Guillain-Barre' syndrome. One round of IVIG blood treatment was given. We could hardldy say the words Guillain-Barre' syndrome. How are we supposed to explain to our family? And for such a big name how did I not hear of this before? And why doesn't anyone know if she will be ok? As I wandered those hospital halls for the 100th time it felt (probably more), I noticed one small sign on a bullitin board that read GBS/CIDP support group meeting bi-weekly. In this giant hospital I thought there should be something bigger out there. I felt like I should have known all about this mysterious illness that my child is up against. So I thought there has to be more. I was affraid to talk to anyone and I was afraid to google anything for fear of finding out the worst case scenarios but I think searching was the best idea. I think searching online prepared me...well helped me understand how her body was behaving anyway! Nothing could have prepared me for this!

 On day 5 was just one MRI left (Just to dot the I's and cross the T's doctors said). Autumn was then diagnosed with Transverse Myelitis (that means they found swelling in the spine). A curve ball. Doctors had to decide if steroids were going to be used or continue with the IVIG blood treatment. Most Importantly, they had to stop the swelling. They decided to go with 5 days of agressive IV steroids. She had hypertension. Her oxygen levels were not stable, her heart rate was still not stable, she had alot of mucus in her lungs and her diaphragm was not working. 
On day 7 I did not truly know for sure if I would be taking Autumn home.


Once the steriods were stopped she then started plasmapherisis ( a slow 3 hour process used to drain blood from the body, separate plasma from the blood cells and return donated plasma and the cells to your body. The exchange replaces antibodies in the plasma that attack the immune system.) Her hemoglobin was low. Autumn needed a blood transfusion. Doctors told us that once their symptoms are at their worst GBS patients hit a plateau and then slowly improve. I wondered if her symptoms were at their worst. I thought how could it possibly get any worse?

Autumns first time outside as her twin sister picks a flower for Autumn to smell....ahhh all of a sudden only these little things matter and all the big things that mattered don't anymore.

It wasn't until day 10 I believe that we were seeing small improvements. Or maybe at that time it was that she wasn't getting any worse. It was a roller coaster recovery. Doctors believe that because she was only a child her recovery was a speedy one. Guillain-Barre' syndrome affects only 1 in 100,000 adults and less in children, only 0.5 in 100,000. Transverse Myelitis affects 4.6 in 1 million people. Mostly aged 10-20 and after 40. Autumn spent 19 days in the PICU and 11 days in pediatric care. Remarkably It took Autumn only 46 days to take her first steps but a couple of years so far to almost fully recover. Autumn was just lucky I guess.. and in less than 2 months even more lucky to have walked away.

The only cause for her illness that doctors could blame was a test that came back positive for rhino-virus (a common cold) that we believe everyone had previous to autumn getting sick. She had no symptoms for days or weeks leading up to her hospitalization. Besides all of the medications...Autumns course of treatment was 1 IVIG, 5 days IV steroids, 1 IVIG, 5 days plasmapheresis, too many medical staff than I can count and a lot of pain that I could not ever imagine in 1 lifetime.

Autumn playing the best she can in her hospital bed 

16 months post GBS/TM doing bicycle tricks with her sister.

Autumn 2 years post and no one can even tell that she was ever so sick. 

I remember bringing Autumn to the park when we first brought her home from the hospital. She couldn't do much other than barely sit but she loved it there. She was so thin and weak. Just sitting in the sand. Dark circles under her eyes. I thought to myself, boy if someone approaches us they are definitely calling childrens services on me. Now she is back to running and playing and causing trouble. There are times she gets sore or tingly feet. I can hear a difference in her voice still but she is here, she is loved and she has an amazing story that I hope she can use to help another person in need of support!

 Love Danielle and Autumn

Alberta, Canada

This is a video that Autumn's parents created when she was a few months into her recovery. I remember watching this video nearly 2 years ago and being inspired by this little girl. But also baffled about GBS. How only one twin is struck by GBS. Even so, we all know that GBS affects all loved ones.

https://m.facebook.com/story.php?story_fbid=10155968568205066&id=558445065&refsrc=https%3A%2F%2Fm.facebook.com%2Fjason.lays%2Fvideos%2F10155968568205066%2F&_rdr

  

The Faces of Guillain Barre 2017: Day 8; Part 1- Kaelyn

Hello, my name is Alicia Sappingfield, and this story is about my daughter, Kaelyn. I'm sorry that my dates are kind of off but I'm going to do my best to describe her story as I can.

Kaelyn is 10 years old, has always been the most vibrant happy playful girl. I want to call her story a Cinderella story, because she is one of the lucky ones.

Christmas Day 2016, just under a month from one of the most terrifying days of our lives. 

One week before MLK day Kaelyn was not feeling well, initially we thought it was just the flu, or that she was coming down with a bug that was going around. Well, the Thursday prior Kaelyn was very off. She was starting to walk funny, which we originally thought was because she had been laying down a lot. The Sunday before that Kaelyn was starting to walk like a drunk person, that she was becoming very unstable in her gait. So I thought that she had an ear infection. I took her to the doctor on the Tuesday after MLK day. They did a urine test and found that Kaelyn had a terrible UTI, they figured that it was just her being dehydrated. That night my daughter was screaming in pain, had to crawl to and from the bathroom and that night I had to put her in and out of the bath tub because she couldn't even stand. When she got out of the tub she fell and hurt herself, so I immediately called the 24 hour nurse, they recommended that she go to the Emergency Room so we did. 

In the hospital bed at the Emergency room. 

They took tests and found that she didn't have any reflexes in her lower extremeties and her tests were coming back pretty bad. They recommended for her to be transported to Rileys Children Hospital in Indianapolis Indiana. We arrived there early Wednesday morning and were put on the 8th floor. We had many tests, met with Psychiatrists -- they thought it was psychosomatic, that Kaelyn was pretty much making up her condition. So that Friday after waiting, doing our own research speaking to neurology we had had enough. 

We were getting no answers, and Kaelyn wasn't getting any better. So her father and I demanded to speak to someone who could give her a MRI and get the spinal done. That Saturday she has her tests done. And that Saturday Kaelyn was diagnosed officially with Guillan-Barré Syndrome. Kaelyn was officially having to be walked only a few steps to a commode to go to the bathroom, couldn't even shower on her own. 

Kaelyn was given 5 days of IVIG treatments. Kaelyn suffered hives from the treatment. During the treatment process as Kaelyn gained strength she was able to go down to the Kidz Zone. Kaelyn endured Physical Therapy and Occupational therapy. She has to go in a wheelchair if she wanted to go long distances. 

Kaelyn meeting a TE from the Indianapolis Colts

After 5 treatments, (over the course of 5 days), and 2 days later Kaelyn was well enough to transfer to the Physcial Rehab portion of the hospital. Kaelyn endured physical and occupational therapy twice a day for a week. At the end of it she was able to come home. 

Kaelyn with her favorite therapist Jake. He came to say goodbye to her. 

She returned home and had 5 sessions (over the course of 2 weeks) of outpatient physical therapy. She had a goal to be able to go dancing with her dad for the daddy daughter dance on February 10th -- and she made that goal with flying colors 

Kaelyn had a follow up in March. It went amazingly well. She saw the physical therapists who were very excited about how far she had come. She then saw her neurologist who was incredibly happy with how much she accomplished. She is 100% back to every activity she loved doing before. She still has no reflexes in her legs and may never get that back, but overall she's a true success story. 

I call Kaelyn one of the lucky ones because I have seen so much worse. 

The Faces of Guillain Barre 2017: Day 7- Juilianna

My name is Julianna. I am 14 years old and I was diagnosed with Guillain Barre syndrome on December 4th, 2014. I was 11 years old.
   
It all started around thanksgiving when I felt tingling around my feet and ankles. My parents thought I was just exhausted from shopping. After 3 days I still felt tingling and a little numbness. I went to the ER where they told my i just pulled a nerve in my back or whatever and I was sent home. 6 days later I woke up and my leg (foot to knee) felt heavy and numb. I went to my family doctor who referred me to a neurologist who diagnosed with with Guillain Barré.

December 4th was the most painful day of my life. Physically and emotionally. The doctor ordered and EMG and a MRI. All I remember was rude nurse who just shocked and poked and me without talking to me and I was crying. I remember how big the needle looked but not being able to feel it.  I had to go to another hospital for the MRI. I remember lying in pain for 30 minutes straight. I felt like I couldn't feel my thigh and my lower back.  We got a call the day after saying I was diagnosed with Guillain Barré Syndrome.

I went through 13 IVIG treatments at home. Part of that was a 5 day treatment and 1 of those 5 days was my birthday. I also started physical therapy 3 days a weak.

1 month after treatments. I took my first steps. My knees where locked shut. I kept getting better. But 2 weeks after my accomplishment, I relapsed. I didn't go completely paralyzed, but I lost all strength. My neurologist diagnosed me with Pediatric CIDP.

After a year, my parents thought the problem was the fact that I wasn't able to go to pediatric neurologist so we begged my insurance to let us and we got approved a month later.

That neurologist said that the reason I lost all strength was because my knees being locked was affecting the nerves in my legs. He sent me to get knee braces and he also thought that I might of been a little depressed from being disabled for so long. And he thought a service dog might help me with balance and emotional support.

 I got my service dog the same day I got my knee braces, it was a coincidence. And then I took a couple of steps with my service dog and my new knee braces. It hurt but I was so excited!

It's took me a year after that to be completely normal and my neurologist said I still have some nerve damage but not enough to cause any problems and I do not have a good reflexes and I might not get them back, but I should be fine.

Today I go to school normally, I'm on zero medication, I do not wear the braces anymore, and I'm a dancer now :-)

Thank you for letting me share my story, this is the first time I've actually spoken about it since it happened.

My Instagram is @julianna_banana02

The Faces of Guillain Barre 2017: Day 4- Ameliya

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