Meet Makenzie, Stroke at age 5

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. 

This image has an empty alt attribute; its file name is Makenzie-1024x1018.jpg
Makenzie’s mom Jamie shares what she has learned since her daughter’s stroke. The main takeaway: It’s important to know that the diagnosis does not define who your child is.
  1. Don’t be afraid to speak up. You know your child better than anyone. One night at Seattle Children’s, Kenzie’s dad asked Kenzie to squeeze his finger with her left hand. He felt something. He told me, and I had Kenzie squeeze my finger, I could feel it too. The next morning, the team came in and we told them what had happened the night before. One of the resident doctors (not our normal doctor) asked Kenzie to squeeze his finger and the doctor dismissed it as an “involuntary reflex.” I knew Kenzie had started to move her hand.  Kenzie had just received an Ironman Mash’em as a gift. If you have no idea what a Mash’em is, it is a soft plastic toy, filled with gel so when you squeeze it, the rest of it expands. I grabbed it and asked Kenzie to squeeze Ironman. She squeezed, and Ironman’s head blew up. Her therapist said, that’s no involuntary reflex and everyone started clapping and giving her high 5’s.
  2. You are not alone. I was introduced to Pediatric Stroke Warriors by Kenzie’s Neurologist at Seattle Children’s. It’s an amazing organization that provides hope and support for families impacted by pediatric stroke. There are many other pediatric stroke organizations; International Alliance for Pediatric Stroke, Children’s Hemiplegia and Stroke Association (CHASA), and American Stroke Association. These are all great resources for information. Through social media, we learned of an entire community of people who understand what we were going through. On those tough days (there will be a lot of those) it’s a great source of encouragement.
  3. One day at a time. As parents of a stroke warrior, you must juggle a lot. Emotions, work, school, therapy, doctor’s appointments, normal every day activities, those unexpected trips back to the emergency room. You will have amazing days and well, some days just plain suck. Your child’s recovery is not a race. Take it one day at a time. If you can’t face the whole day, just focus on that next hour. Slow down as much as you need to just keep going.
  4. Even the impossible can become a reality. Just because your child isn’t able to do something today, does not mean it’s going to be that way tomorrow. Kenzie was paralyzed on her left side, she couldn’t hold her head up, she couldn’t sit up and she had a hard time talking. 3 days after her stroke she took her first steps, at 4 weeks she would return to Pre-K.  At 2 Months she would return to dance classes. At 6 months she would compete in a pageant and take a run on the beach. At 7 months, she would compete with her dance team. At 8 months she would graduate from Pre-k, and dance in her recital. At 10 months, she would graduate out of speech therapy. At 11 months she would start full time kindergarten and wiggled her left toes. She keeps proving that she’s possible every day.  “Nothing is impossible, the word itself says I’m possible” (Audrey Hepburn).

Leave a Reply Text

Your email address will not be published. Required fields are marked *

16 + twelve =