Auroras Story and How it Led to a Child's Coloring Book

Aurora had a normal birth. There was nothing out of the ordinary. She was my first child, and the experience was a joyous one. At 4 months old my wife and I noticed that her right hand wasn’t as active as her left hand. After some search results on google I was concerned. The top results were spastic hemiplegia and cerebral palsy. We decided to keep and eye on it, watching her closely day in and day out to see if we were concerned for no reason. As we started to monitor her more, we noticed that she would have brief moments of absence. It was more like an eye roll. My wife even commented at one point “Oh my god, did she just roll her eyes at me?” As time went on, this eye roll was also followed by a jolt on her right side (which we would later learn was her affected side).

We decided to consult a pediatric neurologist at this point. The first of many struggles we would go through was a 24-hour electroencephalogram (EEG) with a four-month-old.

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Spastic Hemiplegic Cerebral Palsy

The EEG results were very conclusive and devastating. Our tiny little beautiful baby had a massive stroke on the left side of her brain. The very first diagnosis she received was epilepsy with spastic hemiplegia on the right side of her body. For those who don’t know what that it's a type of cerebral palsy:

Spastic hemiplegia is a type of spastic cerebral palsy, where the part of the brain controlling movement is damaged.
The condition can affect children before birth, during labor, or in the first few years of their lives. This type of hemiplegia makes it difficult for the child to do simple tasks, such as picking up an object or walking.” (WebMD)

“[Epilepsy is a] disorder in which nerve cell activity in the brain is disturbed, causing seizures.” (epilepsy.com)

The neurologist started Aurora on Keppra right away to reduce the seizures.

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Infantile Spasms

The seizures continued and increased in number. The medication dosage increased. The medication quantity increased. At one point, we were giving so much medication that Aurora went from a playful happy baby to seeming like a zombie. Regardless of the medications, the seizures rapidly increased. We knew something wasn’t right. What we were feeling can not be described in text, and likely can only be felt by families going through a similar situation. I can’t begin to describe it.

However, my wife was persistent. She was calling the neurology department hundreds of times a day. She’d call after every seizure. HUNDREDS OF SEIZURES A DAY!

Finally, we went in for another EEG. This time another neurologist was brutally honest. What they were observing was a hypsarrhythmia on the right side of the brain. Hypsarrhythmia is essentially an erratic brain wave pattern and is one of the key signs of Infantile Spasms (IS) or West Syndrome. His immediate recommendation based on our story was a hemispherectomy.

“An epileptic spasm is a specific type of seizure seen in an epilepsy syndrome of infancy and childhood often called West Syndrome. These are more commonly called infantile spasms (IS) because they are seen most often in the first year of life, typically between ages 4 and 8 months.” (ninds.nih.gov)

Hemispherectomy

A hemispherectomy is epilepsy surgery that separates the diseased part of the brain from the functional part of the brains. In our case, it was a functional hemispherectomy. Which means much of the brain matter was left in place. Auroras was such a good candidate for this surgery based on the damage that the stroke had done and her young age. Neurosurgery on our baby might be unthinkable for most. But we joined two groups that gave us tremendous hope The Hemispherectomy Foundation and CHASA. I must mention them so that anyone going through what we’ve gone through has support. May 5th, 2021, Is our Hemiversary. This was the day that the procedure was performed. Aurora woke up from surgery, we observed what we think could have been a seizure. Thankfully, that was the last one we observed. Recovery was incredibly hard, as you might imagine. The moment I recall vividly was when she couldn’t keep her bottle down and became very dehydrated. I held her in my arms, and she was what both my wife and I called “floppy”. I can barely describe my emotion at this time. I recall being very persistent and angry with the medical staff. Eventually, we decided to go home. We didn’t feel that the hospital environment was conducive to recovery. We stayed close to the hospital in case dehydration was an issue. But, the doctors and nurses were on board with us recovering elsewhere. It was a matter of a day before she started doing better with uninterrupted sleep and familiar toys.

Coloring Book for Children and Children with Disabilities

Aurora is doing amazing now! She is one of the happiest babies I’ve ever seen. She has her own personality and amazes us every day.

I’ve created a children’s coloring book that shows different children with disabilities playing, happy, doing amazing things. I think it’s important to show that disabilities don’t need to limit your dreams. We have no idea what the future holds and people with disabilities are some of the toughest, most mentally strong people in the world.

I want Aurora to go through life being accepted by her peers. It’s my hope that showing children different types of disabilities will raise awareness and normalize disabilities in general. Awareness is one of the first steps of acceptance. It’s also my hope that by telling our story we can raise awareness around epilepsy, pediatric stroke, infantile spasms and children with spastic hemiplegia. And also support families that are going through this experience.

You can click the buy buttons on the website to order the coloring books for all kids. It's part of a line of amazon coloring books that I've been working on. Amazon will take care of the coloring book printing and ship via prime. All the royalties for this book will go into a trust for Aurora. We don't know what the future holds for her. This is an attempt to generate income for her later in life, in the advent that she needs support.

Auroras Story

All royalties generated by this book go to Aurora's trust

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Auroras Story

This book is a culmination of our journey with Aurora. Aurora is our daughter, she was diagnosed with a stroke at the age of 11 months. Soon after, she was diagnosed with a rare form of epilepsy. Traditional medications did not work for her. We were left with an unthinkable choice. At 1 year, she had a hemispherectomy and will live out her life with the use of only one side of her brain. To date, she is doing great. Every day she makes progress and thrives.

Not a day goes by when we don't think about her future. How will her peers react to her? How will she survive when we're gone?
With the intent of providing just a small amount of income for her.
It's normal to fear or have hesitation about things we don't understand. Especially children. By exposing children to neuro and physical differences early, they gain understanding.
Seeing children and individuals go on to like normal lives, and playing like all kids to bring a sense of acceptance and inclusion.
Studies show that engaging in a creative activity like coloring can help us to create an overall better sense of well-being, engaging in a creative activity like coloring can help us to create an overall better sense of well-being.