May is Pediatric Stroke Awareness Month. Many believe that strokes only happen to adults. The truth is strokes can occur at any age. Childhood strokes mostly occur in the first year of life, especially right before and right after birth. Pediatric strokes are among the top ten causes of death in children.
One of the common causes of cerebral palsy is the result of a pediatric stroke. Pediatric Strokes can result in other permanent disabilities/conditions as well, including epilepsy, behavioral and emotional difficulties, sensory disorders, delays or difficulties with speech and language, hearing and vision problems, learning disabilities, and ADD/ADHD. However, with medical advances and prompt treatment many pediatric stroke patients go on to live fulfilling, long lives.
Come Roll With Me has opened the doors for me to meet amazing people. Via Instagram, I began to follow the life and story of Greyson, a child whose pediatric stroke resulted in a diagnosis of cerebral palsy. What caught my eye and initial interest was his smile! Greyson’s mom, Keria Gros, has an incredible blog called Greyson’s Gains. In honor of Pediatric Stroke Awareness Month, I wanted to feature this incredible toddler and his family. Here is Greyson’s story, told by Keria Gross.
This is the story about a courageous little boy…
Pregnancy and Birth
We went in for a routine ultrasound at 34 weeks. This is where they discovered that my unborn baby had fluid on his brain and enlarged ventricles. We were referred to a maternal fetal medicine specialist every 2 weeks. Every test that we were able to do in utero came back normal. The cause of the fluid was still unknown. He was born via c-section at 39 weeks due to his head measuring 2 weeks ahead of schedule. The doctors felt this was the best course of action to avoid putting pressure on his head.
August 25, 2014 Greyson’s birth was the happiest moment of our lives. Our baby came out healthy 6 lbs 12 oz and 19 ¾ inches long and doing everything a newborn should do. We had no complications during our hospital stay. We were lucky to avoid the NICU. One of the days there, they came in with the ultrasound machine and performed one of Greyson’s head. The fluid still remained, but his head was now measuring at a normal scale. We still have no explanation. This is where they ordered an MRI outpatient.
First Year
Greyson had an MRI done at 2 weeks old to see what was going on. For a new parent, this was scary having to put your barely 3 weeks old under general anesthesia. This is where we were told the words that forever changed our life. “Your baby had a stroke in utero and a brain hemorrhage in his cerebellum.” We were told that everything was absolved. Long-term effects would be his coordination, which little did we know at the time, had everything to do with the human body. Along with coordination his balance was equally affected.
Eye Surgeries
Additionally, the stroke affected his vision and he had 2 eye surgeries before he turned one. Greyson was crossed eyed at 3 months old. It never corrected itself at 6 months old so they decided the surgery to correct it was the best option. He underwent surgery twice to correct it before he was even a year old. Once they were corrected everything changed for him. He was able to see a little better and started hitting his beginning milestones as far as reaching and grabbing. It we wouldn’t have corrected this, I’m not sure if he wouldn’t be where he is today. When they are this young the point of the surgery is to train the brain to see things they way they should be. It was one of the best decisions we could have made for Greyson.
In the very beginning, I honestly thought it was the end of the world. I didn’t know what we were going to do? How were we going to handle it or what would it be like? The unknown drove me crazy. The first few months of Greyson’s life, we were in denial because everything seemed normal. For us it was between the 4th-6th month marks when we started noticing the delays. This was a very hard pill to swallow. I went through a long emotional rollercoaster trying to get a grip on everything. This didn’t come easy for me. Eventually I came to terms and just embraced our new fate. I started living life based on Greyson’s timeline.
Age 2: Diagnosis
Greyson was sitting up by his first birthday and crawling by his 2nd. At the age of 2, he still wasn’t talking or walking. This is where he was diagnosed with Cerebral Palsy (ataxic). We were finally able to get Greyson a pair of AFOs and his posterior walker to help him progress. Around this time he was diagnosed with Speech Apraxia. This caused him to be non-verbal. Through his therapy, we picked up sign language. Sign language really helped him gain an understanding what things were and how to communicate his needs.
Age 3: School
In September 2017, shortly after his 3rd birthday, Greyson aged out of early steps and into the school system. We were able to work out something that allowed him to attend a play group at the local school to continue getting his services. This I believe was our game changer. Shortly after he started being around other children, he started becoming verbal with the help of oral motor therapy. Greyson started taking independent steps and was speaking one word at a time. By January 2018, he was fully verbal and independently walking. We were able to stop using his walker. He still struggles with his balance and speech, but he continues to improve.
Greyson in a Nutshell
This has been the hardest yet most rewarding experience of my life. As much as this experience can suck, it’s amazing to see their progress and what their tiny little brains can actually do and achieve. Greyson is a fun loving, goofy typical 3 years old that seems to win a lot of hearts. He’s smart and doing well with therapy. Cognitive & academically he wasn’t affected. The gross & fine motor is where we struggle the most. I wouldn’t change Greyson for the world, but I would change the world for Greyson. Being his help and witness, there is no greater feeling in the world. He may do things differently and at a slower pace. He’s a fighter that will prove us all wrong.
Guest Blogger: Keria Gros
Thank you Keria for sharing Greyson’s story! Until next time, Keep Rollin’ and Keep Smilin’!
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