Lucas Reynolds

Age: 3
Cognitive Age: 18-24 months
Therapies: Physical, Occupational, Speech, and special instruction. “His sister is by far his best therapy, as well as starting at our local daycare. He had such great teachers, at both locations!”
Schooling: Mainstream pre-K, “Since Lucas turned 3 in February, he attends pre-school at a mainstream school through the Lincoln Intermediate Unit! This is where he receives his services now.”
Siblings: Leighton (15 months)
Parents: Brad and Dominique Reynolds

Kabuki Symptoms: Short stature, arched eyebrows, beautiful long eye lashes, protruding ears, arched palate, fetal finger tip pads, hypotonia, double collecting kidneys, bilateral hip dysplasia (biggest issue, corrected multiple times), right knee dislocation (born with, corrected), chronic ear infections (tubes helped), and developmental delay.

Lucas’ Story: When Lucas was born a few short years ago, Dominique and Brad were excited to be brand new parents. It was a difficult pregnancy, with Dominique contracting gestational diabetes, and at 20 weeks gestation the doctors discovered one of Lucas’ duplicating systems on his kidney. As first-time parents, they were already nervous to have a baby, but little did they know that Lucas’ kidneys weren’t the end of their worries.

 

Due to her gestational diabetes, Dominique was scheduled for induction. But Lucas had other ideas! He decided to come early, and the delivery was not easy. There was meconium, and Lucas’ heart rate would decelerate with every contraction before Pitocin was given. An emergency Caesarean section was performed and Lucas entered the world when he told the doctors it was time. His umbilical cord had all of its vessels, but was thin, and the doctors mentioned that he was “floppy.”

 

During his first 2.5 months, Lucas saw various specialists and struggled to gain weight. Around 2.5 months, Lucas fell ill and was admitted for observation. On his final day at the hospital, one of the doctors mentioned that Lucas should have been holding his head up better. Being new parents, Dominique and Brad were devastated. They hadn’t known, and it’s a testament to how little doctors tell new parents about the developmental milestones of an infant. This is when the Reynolds’ looked into early intervention services and Lucas started physical therapy and occupational therapy.

 

When he was 8 months old, Lucas was diagnosed with developmental hip dysplasia. Brad and Dominique took Lucas to see Dr. Sponseller, one of the top pediatric orthopedic surgeons at Johns Hopkins. Dr. Sponseller wanted Lucas admitted a few days after their appointment for traction. He was supposed to be in traction for two weeks, but luckily Lucas only had to do one week. The whole process was extremely difficult for everyone.   

 

In October 2015, Lucas had his first surgery (closed reduction) and was to be casted for 12 weeks, with a cast change in the middle that would be done under sedation. After the change, they learned it would be 9 additional weeks instead of 6. Another setback.

 

In February 2016, Lucas finally got his cast off. But it wasn’t the end of the process. Lucas would be in a Rhino brace 24/7 for two months, and then at night for three additional months.

 

While all of this was going on, Dominique and Brad were discussing having a second child. Lucas was one, and they felt it was time, but also felt scared and selfish. In April 2016, Lucas had ear tubes placed to help with the infections he kept getting, and the Reynolds’ learned that they were pregnant with their second child. In August, Lucas had his right knee aligned, his first open surgery, and at several months pregnant, Dominique hauled Lucas to PT a few times a week.

 

December 22, 2016, the Reynolds’ welcomed Leighton into their family. Lucas wasn’t sure what to make of her at first, but soon warmed up to the idea of being a big brother.

 

Shortly after the New Year, the Reynolds’ had their first experience of having a hospital stay with two children. Brad took two-week old Leighton, who was exclusively breast fed at the time, home. Dominique was torn, feeling like she abandoned her daughter, but knowing Lucas needed her more. A month later, they heard Lucas’ hip pop and knew his reduction failed. In March 2017, he had his acetabular and femoral osteomy, another hospital stay. Then, in July 2017, they began to hear popping in his “good” hip. That’s when he was diagnosed with bilateral hip dysplasia, only the other hip still needed to heal, so he couldn’t have it fixed until October.

 

That surgery was probably one of the most difficult for Dominique and Brad because Leighton was starting to walk. This meant that while Lucas was hospitalized, Leighton would also need a more watchful eye. There were many trips to the play room, but Lucas could not go and did not seem to want to go, and it was hard on everyone.

 

Now here we are, over 6 months post-surgery, and Lucas is a thriving preschooler. He learns new words every day, runs around in his gait trainer and strives to keep going even when his body tries to hinder him. And while there have been hard times, Dominique is so grateful for the support of  her family and friends, but most of all for the support and strength she receives from her husband. There will always be hard times, but cheering the small victories together is what gets us all through.

Lucas’ Favorites: “Lucas LOVES balls. Baseballs, basketballs, footballs, soccer balls…anything that looks like a ball! He loves to eat and then ice cream. Uncle Butchy is his best friend. Daddy time is great.”

 

Lucas’ Relationship With His Siblings: “Lucas and Leighton show so much affection for each other, but Lucas  also lets her know when he does not like something. He takes her in doses. When they see each other after being apart, the looks on their faces are priceless. They like to team up to make small messes bigger ones!”

Advice for Kabuki families: “To new Kabuki parents, “Never let the fear of striking out keep you from playing the game.” -Babe Ruth. We don’t know what Lucas will be capable of in the future, but he tries every moment of everyday! He is the strongest person we know. Through all of his obstacles, he has had an even bigger comeback. Enjoy the smallest of small victories, and that will keep you going!”

Advice for parents of “typical” children: “Don’t take anything for granted, but that’s for every person and parent. Don’t judge other parents or children. You don’t know what they have been through. Help when you can. Friend the parent…friend the child…everyone needs someone to talk to!”

How Lucas has impacted the family: “Lucas was not diagnosed until 18 months old. It was a very rough time, with many tears and doctor’s appointments! We felt this huge sense of relief when we finally were clinically and later diagnosed through blood work. We finally had a whole community and resources of people in a similar boat, although we all have different journeys! Lucas changed our views on everything. He didn’t just make us parents. He made us parents that appreciate every single, tiniest victory and moment. We often confuse people with our excitement of small victories. Things parents with typical children didn’t have to even think about or work toward!”

The Reynolds’ have certainly been through their fair share of the unexpected, but they have come out stronger because of it. Lucas and Leighton will be fast friends, and they are sure to push each other as they grow!

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All Things Kabuki (ATK) is a registered 501(c)3 non-profit corporation based out of Wasilla, Alaska. We are the only U.S. patient advocacy group supporting the Kabuki community globally. Our mission is to raise awareness, incite research, and support individuals and families affected by Kabuki Syndrome.
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