Meet Waylon

14 weeks into the pregnancy, Stephanie and Matt found out one of their twin boys would be born with arthrogryposis — a condition characterized by joint issues that can severely limit range of motion. After a challenging and complicated pregnancy, twin babies Skyler and Waylon, were born prematurely at 32 weeks. They spent the first 4 (Skyler) and 5 (Waylon) weeks of their lives in the NICU.

Waylon was born with his arms and legs locked out with no bend to his joints. His pediatricians referred him to Kindering soon after his birth and he was enrolled in Kindering’s physical and occupational therapies right after he went home from the NICU.

Stephanie and Matt did not know the severity of Waylon’s arthrogryposis or how he would be affected at birth, and they had many fears about the impact it would have on his life.

“Our biggest fear when we first learnt of his diagnosis was his independence… how he would do things on his own, live on his own, live in a society that’s not very friendly to disabled people,” Stephanie said.

The parents were already familiar with Kindering, as their older son, Elijah, attended a daycare facility housed in the same building as one of Kindering’s campuses.

Through persistent work in physical and occupational therapy, and with the encouragement of his favorite Kindering therapists, Jen and Joy, baby Waylon gradually began achieving developmental milestones. He even learnt to sit up not long after his twin Skyler!

Stephanie shared, “We knew his arms and legs didn’t bend. Just watching him reach a range of motion has been huge.”

Although his congenital condition could affect any muscle, Waylon’s capacity to swallow food and breathe have not been directly impacted. However, due to his limited range of motion — he could not bring his hand to his mouth — one of Waylon’s biggest struggles was self-feeding.

But with his newfound motor skills gained through physical and occupational therapies, Waylon is now showing more interest in feeding himself. Since he is unable to bend his arms to eat, he is beginning to try to find ways to bring his mouth to his hand.

Stephanie and Matt found the Kindering therapists to be “great sounding boards” for themselves as parents on their journey in understanding Waylon’s needs. They talk through their challenges and find solutions to critical everyday things like how to make Waylon’s environment more supportive of his needs, finding creative ways he can enjoy his toys, etc.

Stephanie said, “Sometimes when you’re with someone all the time you may not notice something. So, a fresh perspective really helps.”

Waylon is 18 months old now and his mother describes him as “the observer” among the three siblings. He’s also very funny and has learnt to express himself via facial expressions due to his body’s limited range of motion.

“There’s a lot of chaos, fighting, and wrestling with the three boys, but there’s also equal amounts of empathy and care towards each other. Elijah and Skyler take care of Waylon and always include him in their play,” Stephanie said.

On their dreams for Waylon’s future, Stephanie and Matt agree: “Our awareness around disability and ableism has increased in this process of raising a child with disabilities. We really hope Waylon isn’t held back by his disability. He’s always surprising us. He’s really smart, introspective, and observant… We hope he learns compassion through the way he experiences the world, and spreads love and joy. We hope he will be included by his peers in his classroom and his friends in the world.”

Meet Lucy

Parents Adam and Amy found out their baby was going to be born with a heart condition when she was in-utero, which her doctors were planning to address soon after her birth. Despite their preparedness, there were more unanticipated complications in baby Lucy’s birth. She was born a month early and after her birth, Lucy’s doctors found out that she had association, a genetic condition that causes birth defects affecting multiple body systems. For Lucy it presented with her esophagus attached to her trachea.

Lucy was immediately taken to Seattle Children’s while Amy continued to recover at the hospital. At 3 days old, baby Lucy underwent surgery to separate her esophagus from her trachea. The surgery led to complications that damaged her lymphatic system, which meant she could not process breast milk.

“Dealing with an infant who couldn’t feed… it was very scary. We didn’t know how she was going to feed or eat,” her parents shared.

Lucy was fitted with a nasogastric (NG) tube and the hospital removed the fat from the breast milk which helped with her feeding. However, Lucy had important weight milestones to reach in order to safely have the surgeries that would help with her heart condition. Lucy “lived at Seattle Children’s for nearly 3 months.”

Lucy was born with two holes in her heart, which meant her body was constantly in the state of running a marathon; she breathed by panting. After weeks of monitoring to ensure she reached her weight requirements for surgery, Lucy finally underwent heart surgery when she was less than 2 months old. It also happened to be a day before her older sister Leela’s 13^th birthday. Amy and Adam recollect the time being a hard emotional period and working to make sure one of them was always present for each of their children.

The day after Lucy arrived home, Kindering therapists visited her for an evaluation. Lucy was soon enrolled in physical and feeding therapies. “Everything was so overwhelming. I just don’t know where we would’ve been without Kindering’s support,” Amy said.

The parents’ biggest fear was getting Lucy enough nutrition to grow and develop, especially since she was fully fed only through the NG tube. Due to Lucy’s condition, breastfeeding was not a likelihood for her initially.

Lucy’s mom Amy says, “I remember I was very determined to breastfeed, and I was pretty much told [by doctors] that was not going to happen. When I shared my desire to do that with our [Kindering] feeding therapist, she helped make sure that could happen for us. And I could breast feed her at 8 months old. We never thought it could happen for us!”

In less than a year of feeding therapies, Lucy needed further help that required her to transition from her NG tube to a gastronomy tube (G-tube). With assistance from her Kindering therapists, Lucy learned the skills to eat by herself when she was 1.5 years old and now enjoys all foods without the need for a G-tube. With the help of physical therapies, she has also reached all of her physical developmental milestones, becoming more independent, and enjoying her favorite activities: dancing, running, and playing.

Later, Lucy was also enrolled in Kindering’s inclusive preschool program, Stepping Stones, where she enjoys putting all her physical, motor, feeding, and play skills to good use with the friends in her class.

3 years old now, Lucy is a rambunctious, hilarious, kind, and empathetic kid who is full of life and has a big personality. She looks up to Leela as a role model although they still have their fair share of sister fights. “We never wanted our older kid to be a caretaker and wanted them to be sisters. It’s beautiful to witness their relationship,” Adam said.

On their dreams for Lucy’s future, Amy and Adam shared, “Our dream is that she gets everything she wants. We want her to know who she is; we will support her every step of the way.”