This is Brady’s Story
* * This is the story of Brady’s life through the eyes of his mother Jacci. It does not reflect the experience, view or beliefs of anyone else in Brady’s family or the board of directors for Brady’s Foundation**
I was so excited when my due date finally arrived, November 9, 2008. Like every expectant mother I was nervous and scared and ready for this baby to come out! And just like lots of expectant mothers my baby did not come on the due date. Bummer. After 3 days of being induced, back contractions, an ambulance ride and a c-section my baby was finally here safe and sound!
Brady Johnathan Regehr was born November 13, 2008 at 8:35 am. He was 9 lbs 6 oz. He was bald and beautiful. Sparkling blue eyes and a little button nose. He was absolutely perfect and I was in love. His first few days were uneventful. We stayed in the hospital for a few extra days, to help me recover and he had some small jaundice issues. From the moment Brady was born we had a special connection. I remember when we were still in the hospital and the lab tech was trying to get blood from his tiny little heel. She was a young lab tech and was having issues getting enough blood, Brady was screaming his little head off and I was crying in the corner, exhausted from surgery and having a new baby. I couldn’t take it anymore and I went over to Brady, I put my hand on his head and said “its ok B, mommies here” and he stopped crying, he just looked at me with those beautiful blue eyes. He didn’t make another sound, he just laid there staring at me until the procedure was done. I remember the nurse in the room said she had never seen a baby react to a mothers voice and touch like B did with me. And from that moment on, it was him and I against the world.
Brady, who we came to just call B, was the poster child for a good baby. He slept through the night at 3 months, he ate like a champ, didn’t refuse bottles when we started giving them. He didn’t have any health issues besides a few small bouts of thrush. He never made strange with people, he just smiled and cooed. I was so thankful to have a healthy and happy baby.
As Brady grew, he hit all his milestones, he crawled on time, walked on time and could say a few words. He was so coordinated! I remember being amazed how he could wield a hockey stick or a baseball bat at such a young age. Dreams started filling my head of him winning the Stanley cup or the world series. He had impeccable aim when he threw a ball. He could jump and climb, loved swimming and riding his strider bike. He was so able. He had a huge personality. He wasn’t shy at all. I remember him at wedding dances on the dance floor dancing with anyone he could talk into shaking it with him, which was everyone. He knew how to make people laugh, and expected you to clap if it was clap worthy, and if you didn’t clap he would stare you down until you did. No one said no to B. He had a contagious laugh, he gave hugs and kisses, He shook hands and tried to say nice to meet you. There was not a mean bone in his body.
Brady was such an ideal kid that it was an easy decision to have a second. Eric Brian was born November 1, 2010, just 12 days shy of 2 years apart. B was a great big brother, smothering Eric with hugs and kisses. He was very gentle with Eric, except when he threw the big bouncy ball and hit Eric directly on the soft spot of his skull, but I am going to say that was an accident, although I did already mention his impeccable aim. Life was great. 2 healthy boys, what more could you ask for? Turns out I was wrong, I didn’t have 2 healthy boys.
April 21, 2011 was just like any other day. The boys and I had joined my sister and her son for a Costco trip. We had a great day, shopping and getting the boys burgers for lunch. We got home around 4 in the afternoon. After getting the groceries put away, I started to make supper. Eric was 6 months at the time and was having a nap in his swing. I set B up at the table with some coloring books and crayons. I had some chicken in the oven and was stirring the rice when I heard a thump. Thinking B had just bumped the table aggressively I looked over to find an empty table. I went over to his chair, and I found him having a full Tonic Clonic seizure. I scooped him up in my arms, grabbed my cellphone and dialed 911. As I was giving our address to the 911 operator, I laid B on the floor and tried to comprehend what was happening. I remembered from the crib talk class I took when B was a baby that the most important thing to do was look at a clock, so I did. It meant nothing. I could see all the numbers and I had no idea what they meant, it turned into a completely useless and foreign object. So, I just focused on B. The operator was telling me to turn the outside light on and tie any animals up, but I couldn’t leave him. He was still seizing on the floor, his little arms stiff and shaking, his mouth making this awful snapping sound and his eyes rolling back up in his head. The skin around his mouth turning was blue, I knew there was absolutely nothing I could do. But then all the sudden it stopped. His little body relaxed and he just laid there. I remember asking the operator if I could hold him, if it was ok to touch him. I don’t know what was scarier, the actual seizure or the moment it stopped and he was breathing so shallow that I couldn’t tell if he was breathing at all. The thoughts in my head were “is he dead? Can you die from a seizure?” I had absolutely no idea. Eric was still sleeping in his swing, supper was burning in the oven and on the stove and I just sat with B on the floor. By the time the ambulance came B had kind of woke up, sore and irritable from the experience he just went through. The paramedics checked him over and said he was fine, and that we could take him in to get checked out. Into the hospital we went. While we were there he perked up, I thought he had fully recovered, and about 5 minutes before we were going to be discharged Brady was sitting on my lap, and I noticed his body tensed up again, I looked down and his eyes rolled up in his head. It was happening again. I laid him on the hospital bed and the nurses took right over. I remember the Dr. running around not having a clue what to do. In a small-town hospital seeing a child seize doesn’t happen often. 45 seconds passed and the seizure was over. Clearly something was happening to B. We were taken by ambulance to a hospital in a larger center to see a neurologist. I remember being so scared the entire time. I slept across the foot of his hospital bed that night, always having a hand on him so I could feel if he had another one. How was this possible? What was happening to my son, will it happen again? I couldn’t stop thinking. I couldn’t shut my brain off. Thank goodness my parents took Eric, so I didn’t have to worry about him as well.
We spent 3 days in that hospital, B had blood tests done, an EEG and a CT scan, and getting a 2-and-a-half-year-old to have a CT Scan without sedation in no easy task. I walked him through the hospital in a stroller for over an hour to try and get him to sleep, and then had to transfer him to the CT Table without him waking up. We got it done though, and on the 3rd day we were sent home to wait for the results.
The results for the tests came back and it was determined he must have experienced febrile seizures even though he had no signs of a fever. It didn’t make a whole lot of sense, but we put our faith in the Doctors and went on with our lives. I was still so scared. I had a hard time letting Brady out of my sight. Any thump or bump I heard I was sure I would find B seizing on the floor. A month passed and I was finally getting comfortable again, letting my guard down a bit. We were in at my sister’s house and B and his older cousin Logie were playing out in the sandbox. I just happened to go to the window to check on the boys. Not a second after I looked out I saw B tense up and fall over. It was happening again. I ran out to the sandbox, scooped him up again and brought him in the house. 2 minutes of seizing and it was over. Something was wrong. I just knew there was more to this than febrile seizures. I kept asking to be referred to the Alberta Children’s Hospital in Calgary, and our family doctor kept saying “lets just wait for 1 more” “we will see if he has another one”. Finally, after his 4th seizure I had had enough. We took Brady into the emergency room at the Children’s Hospital and wouldn’t leave until we saw a neurologist. It was worth the wait. We saw a resident neurologist and she agreed that he needed to be started on an anti epileptic medication. We started a low dose that night and we got the referral to the neurology clinic at the hospital.