The Faces of Guillain Barre 2017: Day 9 Elise

Before Guillain Barre, I was healthy girl, very active. I lifted weights, I nannied, and was always out and about doing something exciting. Exciting in my eyes at least. The summer before my Junior year in college everything changed. I started to have back pain, out of the blue. I thought it was just a weird body thing that will just go away, cause you know those tend to happen, but it didn't. 

The back pain slowly became worse and spread to other joints: first my wrist, then my ankle, my knee, my elbow, and finally my shoulder. All on the left side of my body. I started to lose weight, and I thought it was due to not working out for a while (losing muscle). I started to see a chiropractor who made adjustments to my spine and knee and etc, but it only got worse. I would try to ice my joints, bu I didn't have enough ice packs to cover them all. Despite it all, I packed up and went to college. I saw a chiropractor there who diagnosed me with scoliosis, but told me that that can't be the cause of sudden pain. Frustrated, I attempted to focus on my first week of classes.

One morning I woke up and the toes on my right foot were tingly, sort of like my foot was asleep. I expected it to go away, but it didn't. I ignored it. The next day I woke up and the tinglyness had spread to my arms and legs, also my left shoulder lost some of its strength. I freaked out, and went to urgent care where they took blood tests and after finding nothing, told me I was just stressed. Just relax, they said.

I continued to see the chiropractor as the symptoms got worse, and eventually she told me that there is something else going on, not spine related. The next day my doctor had told me to go to the emergency room and to ask them to take more tests than just blood tests. I went to the emergency room like he suggested. They took a blood test, sent a spinal surgeon to go talk to me, and he told me that I was just stressed. Just go home, he said. I did.

After being sent home for the 3rd time

I continued to go to classes that week, and then the pain stepped up. My neck started to hurt so bad, I couldn't think. I woke up crying, and was too stubborn to take any pain killers. I went to bed every day hoping it would just go away. I woke up every day to more symptoms. I decided to call a neurologist, and sent a quick and desperate prayer up. The first one I called told me that the earliest appointment would be a month from then. Frustrated i said "yeah that won't work" and hung up. (I'm nice I swear). 

I called another neurologist and they set up an appointment that week. He ended up being a pediatrician, but he knew what he was doing because he told me what I had right away. I was like "Gubulubulu whaaaa?" He sent me to the hospital again and called them with a list of tests to perform on me. I had my friend drive me there because at that point I was too tired to drive myself. Another few hours in the waiting room. When I was emitted they performed a Spinal Tap on me, which came back negative. My mom drove up to be with me and we stayed in the hospital for three days in order to wait for a certain neurologist, apparently top notch, to take a look at me. 

When he finally came in, he performed some reflex tests on me for about a minute, told me that there's nothing wrong with me (although at that point I couldn't walk) and sent me home. They wheeled me down to the parking lot, and then something awful happened. I have never had a migraine before, but this was one of the worst days of my experience with Guillain Barre. I was in so much excruciating pain, and I couldn't stop throwing up. A block away from the hospital, my mom turned around and brought me right back. They drugged me up and sent me away again. This seems to be a trend.

For about a week, I stayed at my boyfriend's parent's house, because I didn't want to go home. Going home meant giving in to whatever was going on in my body. It meant taking the semester off. It meant that something serious was going on. I didn't want that. I just wanted to live my life like I was supposed to. Like everyone else my age was doing. And so for a week I stayed there waiting for any improvements, which didn't happen. 

Every morning I woke up, and thought that maybe that day I would be able to walk normal again. Every morning I woke up less able to function. I became so very tired and depressed of not being able to move. I had lost my independence, and started to have to depend on others to help me with everything, including fun stuff like going to the bathroom. Netflix became my best friend, but like that annoying friend that you're so sick of. Actually no, I don't have that kind of friend but I'm sure some people do.  At this point, I started bargaining with God. I would've traded anything to be able to move again. At this point, if I had to endure even another month of being paralyzed, I would've rather died. Dramatic. I know.

A week came and went and my mom picked me up and took me home. More doctor appointments, more worsening of symptoms, more pain. Going to the bathroom became the worst part of my day because moving became harder and harder, and my poor mom wasn't strong enough to carry all of my weight. Wake up. Take drugs. Sleep for another half hour until the pain was more bearable. Eat food that I couldn't even taste anymore. Throw up. Cry. Watch netflix until my brain became numb. Sleep and repeat. Until FINALLY a neurologist diagnosed me and sent me to a hospital who TOOK ME SERIOUSLY and started treatment right away. And there were so many tests. Two hour MRI, spinal tap, blood test, weird nasal test that hurt, blood test, CT scan, and it never stopped. 

Three days later I could lift my leg up. I cried, my mom cried, my nurse cried. We all cried. It was great. I kept trying again because I was so excited that I could lift my leg! You should try it sometime, it's fun. More treatments and tests and physical therapy. Ten days and I was sent over to the Rehabilitation hospital where I spent a week relearning how to walk, dress myself, shower, get up without falling over, walk in a straight line, and the list goes on. Then I was finally allowed to go home and recover on my own. And oh boy! I so missed being allowed to pee without people watching.

The story sadly doesn't end here. During my recovery stage I've had to go to urgent care, or some other doctor's appointment for the most random stuff. Guillain Barre is basically a "figure it out yourself" kinda illness, because it's so different for everyone. I had pain in random places, the feeling of constantly needing to pee, and no one mentioned that flare-ups were a thing. Flare-ups are the best. The symptoms come back and it scares you into thinking that you're gonna relapse but then it just goes away. Fun stuff. 

Standing without assistance. First day home from the Rehabilitation Center

Now it is ten months after the first symptoms came, eight months after my diagnosis, and seven months out of the hospital. I still have a long road ahead of me, but I am stronger than I ever was before. Life is so much more precious to me, and I appreciate every piece of it. 

The Faces of Guillain Barre 2017: Day 8, Part 2- Corey

My name is Corey (some call me Lindsey, my middle name), I am 28 years old and I live in New Hampshire.

My long journey with Guillain Barre started in March of 2015. For weeks I had been suffering from the flu and major pain in my abdomen. I am not one to rush to the doctor every time I feel sick so I decided to wait and see what happened, I never imagined it could get any worse. After a few days of non-stop vomiting I threw in the towel and decided to take a trip to the ER. After some tests, blood work, and an x-ray the doctor told me my liver was double in size and I would being admitted to the hospital. I was scared of course but I tried to remain optimistic. After an upper endoscopy and a biopsy of my liver, I was given the official diagnosis: I had non-alcoholic fatty liver. They gave me some potassium pills, assured me that everything would be just fine, and sent me on my way.

Over the next few days Guillain Barre got it’s hands on me and still has refused to let go. The tingling and weakness was almost immediate, it felt like my hands and feet were just about to fall asleep but never quite got there. My legs were so weak I couldn’t even make it up the stairs and I began to fall at random if I walked to much in my house. I became very frightened and took a trip to the ER. After some blood work and a lot of waiting around I was told to go home because there was nothing wrong with me. Two days later I was completely paralayed from the neck down.

My neighbor was kind enough to pick me up and place me in the back of my mother’s car, she rushed me to the hospital. When we arrived two paramedics came outside and picked me up, they brought me in, and placed me in an examination room. After more blood work and some tests the doctor said there was absolutely nothing wrong me. He suggested I see a psychiatrist or perhaps seek help for whatever addiction I had. A nurse then forced me to my feet which was probably the most excruciating pain I have ever endured, she placed my hands on a walker and let go of me. I fell to the floor and couldn’t move, I just lay there crying. Not only was I in a massive amount of pain but I was terrified and humiliated. The paramedics brought me back to the car and again sent us on our way.

Early the next morning a family friend was kind enough to help us get to Maine Medical. I was quickly admitted and the hospital would become my home for 34 days. The first couple of weeks were extremely scary because no one knew what was happening to my body. I went through every possible test and a massive amount of blood work yet we still had no clue as to what was going on. Then finally came the spinal tap and that was all we needed, I was officially diagnosed with Guillain Barre Syndrome.

The recovery process almost felt like torture but I was willing and ready to do anything in order to save my life. There were moments I felt like giving up and there were times I was so humiliated I didn’t think I could go a step further. I went from being an able bodied, healthy, young adult to someone completely dependent on others. In order to get a nurse I had a rubber ball placed between my neck and chin, since my head was the only body part I could move I would have to use my chin to squeeze it. I used it for everything from needing a sip of water to requesting the ever so elegant bed pan that I was stuck using for longer than I would like to admit to.  I received IVIG treatment for 5 consecutive days which worked wonderfully in my favor. The movement in my hands came back just a little bit and at that point I was able to start my occupational therapy. I progressed slowly but surely and eventually I was given the green light to head to a Rehabilitation Hospital where I would start learning how to be human again!

I spent a total of 3 ½ months at Northeast Rehab, the average patient sent there only stays about 2 weeks - so that gives you an idea of the severity of my condition. This facility changed my entire life and I am incredibly grateful for each and every staff member that I was lucky enough to work with. Within that time frame I went from completely bed-ridden to using a walker/wheelchair combo. I was discharged on August 18th, 2015.

Since coming home I have been committed to lots of physical and occupational therapy which has helped but I am still wearing leg braces and using a forearm crutch, my balance is much better but nowhere near where it should be. I have gone through a gallbladder removal, hernia repair, suffered through lung infections, hearing loss in my left ear due to nerve damage, asthma attacks, chronic fatigue, nausea, and sadly I was diagnosed with CIDP. I no longer have reflexes in my arms or legs and I still suffer from constant nerve pain. I am getting better but it’s a slow process.

5 Months after released from hospital care

For the next 3 months I will receive in-home IVIG. Once I have completed the treatment I will be assessed by my neurologist to see what’s next. Nothing about this has been easy but each day I am so thankful I have made it this far and I will continue to fight! Thank you for allowing me to share my story. If I can ever be a help to anyone going through this disease, please reach out to me. At the very least I can be a listening ear or a shoulder to cry on.

Recent

IG: @lindseyrushe

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 6- Kim

 In May of 2016, I made the decision to change my life after a family vacation I realize my weight was limiting my ability to enjoy my daughter.

Thinking back it pretty ironic that months later I would end up with Gillian Barre. After hard work and diet I lost just over 100 pounds, I was feeling great accomplished happy, and then I got what I thought what was the flu, I couldn't keep anything down I ended up in the ER with dehydration. In and out with no reason or answers just you must have a GI virus. I have a 7 year old Daughter Bella, we love Halloween & are a make our own costume kind of family.  On October 31 after being in the hospital the prior weekend for dyhrdation, I put on my costume to take pictures with my daughter.  I then gave my costume to my Aunt because I just didn't feel good enough something was going on, but I had no idea how my life was going to change.

On November 13, I went to Bella's swim meet, I felt bad, I insisted I must be dyhrdated again and in my mind decided there is no way am I going to the ER again, so I was drinking water and power aid like it was going out of style; one of the other parents my friend Shelly a physician assistant noticed me struggling on the stairs and I was drinking a ton, she was concerned, I blew it off.

On Monday it was awful, I was in pain like I have never experienced, I struggled to walk up the stairs, I had to use my arms to get off the toilet.  I had a doctor appointment schedule on Friday so there was really no reason to go on Monday, so I just kept pushing fluids.  I got home that night after Bella's swim, I just needed to go to bed. I made Bella a peanut butter sandwich we headed up stairs only I couldn't lift my foot, I sat on my butt and went up the stairs using my arms. For the first time, I was scared something was wrong. I laid in bed worried I would die in my sleep and Bella would find me.  I am a single mom what would she do, I got up and got in the shower, when I turned on the water I could see the water hitting my legs but didn't feel the heat the water, I felt nothing, I cried. I had a pannic attack. I dried off got dressed, kissed my sleeping baby girl and went downstairs, I text my friend Shelly, she took me to go to the hospital. I didn't want to leave my daughter to wake up with her mom in the hospital again.

 I called my mom to come over early to put Bella on the bus because I needed to go get my blood work done. I continue to text my friend Shelly that said I really think you should go to the hospital, I think you have Guillain Barre; so I googled it. I laughed she must be crazy. I am just dehydrated. My mom came over to get Bella ready for school, I said good bye.

I remember driving to the Cleveland clinic office to have my blood taken, and then waiting at the walkin clinic to see a doctor. I still had no feeling to the touch of my legs. I was talking to the nurse going over my symptoms she said we can't treat you here you need to go to the ER, my doctor came in with a wheelchair and took me to the ER; I was there for about 2-3 hours and was relocated to a hospital with a neurologist that was going to be able to diagnose me.

Doctor Lindenburgh examined me and attempted a spinal tap in the room, it was to risky so he ordered for it to be done in radiology. It was awful, I was scared, I was alone, I was no longer able to walk, I cried, I vomited, I watched the clock as they did the spinal tap.  I lied in a bed afterwards alone, scared, in pain, a killer head ache, I watched awful videos on my phone of what happens with Guillain Barre.  Dr. Lindenburgh started IVIG that afternoon as the paralysis had move up to my lower rib. It was confirmed the following day November 18, 2017.

After 7 days of IVIG, I was moved to Acute Rehab at southwest hospital, being away from my daughter was the hardest part.  I never minded before being a single parent, I am 37, I had dated on an off through my twenties but nothing substantial- I haven't even gone on a date since my daughter was 2. I was comfortable being single or so I thought.

Being sick and single is hard, I don't really know how to explain it. Rehab was tough, but I was well taken care of I had great PTs, due to insurance I was likely sent home to early but that was ok with me it was the week before Christmas. I was using a walker crawling up the stairs not working, I had no savings to pay bills. I was a hot mess no income, low energy and zero independence.  I missed my life, it's hard for people to understand yes I am lucky to be alive, I am greatful I never was put on a ventilator, that I am able to walk, I get it but I am in complete financial ruins I am a single income family, I have only been released to work 10-16 hours per week but I am working 40, I am tired I have nothing left come 1pm, my legs are tired my body hurts my mind is mush, I get a ride home from work and fall asleep, I don't have energy to play with Bella.  I wake up on the couch with her begging me to play or do homework, make dinner, I am failing as a parent it's a terrible feeling.  My poor kid has been thru so much this year.  She needs me to get better, to recover, to earn an income, to make her dinners, I am her only parent she never has even met her father.

It is almost 6 months and I still have no feeling in my feet, I have phontom pains, night terrors, I have memory loss and I have lost my independence.

People often ask how are you doing, it's just easier to say improving everyday GBS has a slow recovery; no one wants to hear my insurance company sucks and will only fill 100 Gabapentin not the 150 my doctor prescribed, did I mention I have a 15k deductiable before anything is covered or that my doctor is terrified to provide me with narctoics for my pain because I live in a county where there is an opaite epidemic, so I take advil for pain, what a joke!  I sleep about 3-4 hours total from about 6pm-8pm and then 1am-2 or 3am if I am lucky; I wake up in pain with muscle like cramps that won't release or phantom pains that my feet are on fire, my friends and family think I am better because I don't look sick anymore, I am still recovering and everyone else has decided I am better.

I try to stay positive, look on the brighter side be grateful for all I have, I am luck to have a beautiful daughter a reason to live family to love me; and to be honest GBS did teach me that I jumped to anger to easy before.  I don't yell as much I don't freak out about things that aren't important or maybe I just don't have the energy.

The Faces of Guillain Barre 2017: Day 5- Tammy

On November 17,  2016, I was in the hills riding my horse, as I did a couple times a week. This time I came off and ended up in the ER with broken ribs. Though I do not usually get a flu shot, the hospital insisted. 

Before GBS 

At home I was doing quite well. Then about a week later I became very naseated and was not keeping food down. A terrible pain in my upper back sent me back to the hospital. They gave me more pain meds and was sent home. Due to continuous extreme pain and throwing up and weakness, I was back to the hospital. More meds and back home.

The next day the pain was unbearable and I could no longer walk and collapsed to the floor. My husband called an ambulance. They admitted me and gave me more medication for pain. This went on for a week.

Finally my face drooped and they called in a neurologist who sent me for a spinal tap. The diagnosis of GBS was made. My blood pressure was very high and I had developed PRES, swelling of the brain. I was hallucinating and do not remember the next 4 days in ICU. My right eye would not close and my vision was blurry, I couldn't swallow well, my arms and hands were very weak and my legs were paralyzed. I still couldn't eat and was throwing up. My intestines were not functioning well. They gave me IVIG treatment. This turned things around for me. 

In about two weeks my hallucinations were gone (no more bugs on the ceiling). My face and vision returned to normal. I could eat and use my arms and hands. I then went to acute rehab and over three weeks was starting to walk with a walker. At home I had in home PT. Over the course of four weeks I was walking with a cane and slowly going up and down stairs. 

Current 

I continue with outpatient PT to improve my strength and balance, ability to drive, and frankly, my confidence. I hope to ride again in the future. The one thing I don't want to neglect to mention is the support of family and friends. They have done so much for me that it is overwhelming. I thank God for them and the courage to get through this. I have a long way to go. But I'm getting there!

 

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