Little Lydia recovers from surgery with help from her best buds

We first introduced you to Lydia in 2019 – and boy has she come a long way since then. As she prepared recently for a big surgery, she and her occupational therapist Jessica Lynn worked to make sure she was ready physically and emotionally.

Lydia was born with arthrogryposis multiplex congenital, also known as AMC.

Arthrogryposis means curves of the joints and congenital means present at birth. AMC looks different on everyone and affects different joints and areas of the body. In Lydia’s case, it primarily impacts her hands, legs and hips. Her parents have known since her earliest days in the NICU that her AMC-related hip dysplasia may require surgery.

While she has worn a variety of orthotic boots, splints and casts, doctors determined surgery was the next important step in helping Lydia progress and gain mobility. The original plan was to address each hip in a separate surgery, but during surgery the team felt it would be best to move forward with both at once. They reached out to Lydia’s parents and, given Lydia’s track record of strength and determination, everyone agreed.

“Best lunch time phone call we’ve ever had,” said mom, Jan.

Recovery will be lengthy and require that she wear a spica cast covering her legs and waist to keep them still and allow for healing over a period of six weeks. This would be challenging for anyone, but particularly so for a 2-year-old!

Lydia’s parents were not only concerned about the surgery and cast, but about helping their daughter understand and prepare for what life would be like during this recovery period.

“How to tell a kid who uses different communication styles what is coming feels unsurpassable, but helping her see a spica cast in person and explore casts in books really helped,” added Jan. “Lydia and her OT worked on putting a spica cast on her baby doll, trying to help normalize what Lydia’s new normal would be for a while and give space to talk to her about what was coming. I don’t have enough words to express how much her OT and other therapists have meant to us as we prepped for this surgery.”

Lydia recently used her augmentative and alternative communication to tell her mom her baby doll’s name – Baby Jessica, after her favorite therapist. What made this extra special? She had never named any of her dolls before this one.

Whether Baby Jessica or her therapist Jessica, Lydia can take comfort in the support of her best buds.

June 30 is AMC Awareness Day! Learn more about the condition and how you can increase awareness and support.

Discover more about our therapy team’s kid-friendly approaches to help patients thrive