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Kai Lopez

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Age: 18 month

Cognitive Age: 12 months

Therapies: Physical, Occupational and Speech Therapies

Schooling: N/A

Siblings: Iro (5)

Parents: William Lopez and Cecilia Hernandez

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Kabuki Symptoms: Kai had heart surgery at 6 months for the repair of an artery. He may need a stent in the future. He sees his cardiologist every six months. He is in deaf in one ear due to microtia and is hard of hearing in the other ear. He is not able to wear a hearing aid in the other ear because of the constant infections. He currently wears a BAHA with a headband on his forehead while he also wears a helmet to correct the shape of his head. Kai has epileptic seizures on an almost daily basis. He also has hypotonia, speech delay and is small in stature.

Kai's Story: 

Kai was born in January, 2020 in the midst of the Covid-19 pandemic. When Cecilia was pregnant, she was told she had a displaced placenta resulting in an early delivery at 34 weeks. Initially, Cecilia and William, as well as the doctors thought Kai was healthy when he was born but when he was having trouble breathing, he had to be intubated. He remained in the NICU (Neonatal Intensive Care Unit) for one and a half months. During this time, he could not be fed, requiring a feeding tube throughout his hospitalization. Only four months later when he was 6 months old, he needed to be hospitalized again, for heart surgery to correct an artery. William says that Kai is a fighter and as a result, he has made them stronger, too. Without a doubt, his parents and his whole family are also resilient, strong and dedicated to their little warrior Kai.

 

During his first six months of life, the pandemic added another complication to Kai’s family. Hospital restrictions allowed only one parent at his bedside. William and Cecilia live over an hour away from the hospital so they took turns in shifts alternating staying with Kai, and sleeping overnight in the car in the parking lot. His parents were not the only ones that needed to make sacrifices. It was also an extremely challenging time, for Kai’s older brother Iro, who has Autism Spectrum Disorder. Iro needed to stay with his elderly grandmother while Kai was in the hospital.

 

As time went on, Kai had more medical complications. His speech delay, hypotonia and slow growth rate started to become apparent. It was not until after his heart surgery that Cecilia and William found out Kai is deaf in one ear and is hard of hearing in the other. Kai was also having seizures. At first, they were seen every other month. Then they were coming more frequently; currently, he has been having seizures on a daily basis. It is now thought that he may have been having seizures since birth. His physicians are working on finding the right medication that does not make him completely lethargic and that does not affect his low gastrointestinal motility. Nonetheless, Kai is a fighter. He is working on mastering his ability to sit up right now in physical therapy. He loves sitting on the peanut and swinging on the swing.  In speech therapy, he is learning sign language to assist his communication and language development while he is also working on oral speech skills. He loves, he laughs and loves life just like any other kid.

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Kai’s Favorites: He plays and grabs everything he likes to throw things but his absolute favorite thing in the world is his brother, Iro.

Kai's relationship with Iro: Big brother Iro, loves and takes care of Kai. He is very hands on with, and protective of him. They have a very affectionate relationship. Iro just loves to kiss and hug Kai.

Advice for Kabuki families: “Be strong and take it day by day.”

Advice for parents of "typical" children: “Treat them like any other kid, they are no different.”

How Kai has impacted the family: "Raising Kai during the pandemic has been challenging but Cecilia and William have a strong partnership and make the best of what comes their way.  “Life would not be the same for us, he has made us strong.”

Written by Stacy Limperis

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