Life After Stroke: Kenzie, Stroke at 5 Years Old
Our stroke journey began on October 20th, 2017. That night my husband and I would hear the words, “your daughter had a stroke, the damage is irreversible and there could be a hole in her heart.” Before this, Kenzie was a normal, happy, very active and healthy 5-year-old. The stroke resulted in her being paralyzed on the left side. Luckily for us, she had no seizures and she was able to eat and breath on her own.
It would be 3 days before she would get up and out of the hospital bed. When we helped her to sit up, she couldn’t hold her head up. Her dad helped get her out of bed, he had to hold her up because she couldn’t stand. Her legs would just collapse. Her left arm just hung. She was a beautiful mess. That day she would take her first steps. Very wobbly, her left foot dragging, and with her father holding her up. Looking back, that’s the best way I can explain how we got through to this point, one step at a time with each of us supporting each other.
We have just passed the 6 month post stroke month on the calendar. We still don’t know why she had her stroke. Her neurologist says we will probably never know.
We would spend one week at Mary Bridge Children’s Hospital before we would be transferred to Seattle Children’s Hospital for intensive inpatient rehabilitation. We were discharged 3 weeks later. Discharged. I remember being scared and excited at the same time. My own bed! Home! How are we supposed to do all this without a team of 20 doctors, nurses and therapists helping us? What if we fail? Truth is, failure isn’t an option.
The first two weeks after discharge went so fast. We had appointments for follow ups with all the different doctors and specialists, evaluations for her new occupational, physical and speech therapist. Kenzie returned to school. Her dad and I went back to work. Her grandparents would give Kenzie her aspirin every day as day care wasn’t allowed to. They would also take her to most of her therapy appointments, as the only times are available are during our work day. She returned to dance. Not just dancing but back practicing with her competition team. She is in Pilates. Pilates has been wonderful helping regain her strength.
We have our new normal.
It hasn’t been easy. There have been a lot of ups and downs and lots of tears. At one of her first follow ups out of the hospital, the doctor thought he heard something with her heart. We got a heart monitor. That turned out normal. There was another time, she was playing and slammed her finger in the door. It wouldn’t stop bleeding. Took her to urgent care and they tell me it’s the aspirin. It’s doing its job. So, they clean her up and put some topical stuff on it to help stop the bleeding. Then she got the flu. They stressed in the hospital that the flu could be very dangerous for her. We took her to urgent care, who immediately sent us to the ER. Turns out that taking her aspirin and getting the flu puts her at a high risk for a rare disease called Reye’s Syndrome. Luckily, she didn’t have that, they monitored us and let us go home. We are learning as we go.
Kenzie is a warrior, we all are. We have to be.
It is absolutely crazy how far we’ve come in just 6 months. We just registered her for kindergarten. She competed in her first pageant and won a title. We know we’ve just started this journey. As we move forward, we will do it the only way we know how, one step at a time with each of us supporting each other.