Theodora D Achieving Independence: Theodora Donnelly

Teddi is doing amazing in physical therapy. She has made tremendous progress since beginning with us.

Stacey was ecstatic when she received the news that she was pregnant with her third daughter. She and her husband, John, said they wanted to name their new baby girl something “different” and “regal,” as they knew she was destined for greatness. Everything was going smoothly while they patiently awaited the arrival of Theodora (Teddi) Donnelly. Stacey appeared to have a normal and healthy pregnancy, and it wasn’t until her 32-week checkup that her doctor shared some startling news. Teddi had a fetal bowel obstruction, meaning she had a blockage in her digestive tract and would need surgery immediately after birth.

“The doctors didn’t know what was causing her blockage and needed further testing to see what was going on and how it could be fixed,” said Stacey. Teddi was due in January 2020; however, she had different plans and decided to make her debut on December 12, 2019. Not even 24 hours later, she underwent her first surgery, followed by two more surgeries to address the bowel obstruction. Teddi spent the first 8 weeks of her life in the Neonatal Intensive Care Unit at Monmouth Medical Center.

Teddi’s First and Second Year
Theodora DStacey and John brought their daughter home to be with her two big sisters, and everything seemed to be going well. However, with so many stomach surgeries, it was still tricky for Teddi to participate in normal baby activities for development, such as tummy time. Time passed, and Teddi started getting very sick. “When she was 8 months old, she started throwing up a lot, so I called her pediatric surgeon, who had us meet him at the hospital immediately,” stated Stacey. The pediatric surgeon discovered that Teddi had perforated her bowel above the first surgical site, which required another emergency surgery. She spent a month in the Pediatric Intensive Care Unit, having three more surgeries. “It was a lot to handle,” added Stacey.

Theodora DonnellyAfter being discharged and on what seemed to be the road to recovery, Teddi’s parents noticed some motor delays and struggles walking with her left leg. “She’s been through a lot, so we didn’t know if her walking issues were because of all her stomach surgeries and if her motor delays were because of how long she spent in the hospital,” stated Stacey.

Teddi was now 14 months old, and her parents knew that something was not right. Her mom decided to take her to a pediatric orthopedic doctor to look at her leg. Stacey said, “It always seemed to be her left leg.” The orthopedic doctor suggested braces and keeping up with physical therapy. However, after going to a local physical therapist twice a week for several weeks, Stacey felt like something was still wrong with her daughter. The braces and the type of physical therapy she received were not helping, so she sought additional help.

“For about a year, we went to three different pediatric orthopedic doctors, neurologists, endocrinologists, podiatrists and genetic counselors, and we even tried holistic physical therapy. Everyone said, “do this,” and she’ll be fine, or just keep giving it time,” said Stacey. However, Stacey was persistent and strived to find more answers.

Finally, in July 2022, the family visited a pediatric physiatrist who informed them that they’d been seeing all the right specialists. Still, it was overlooked that Teddi has a mild form of cerebral palsy. She was diagnosed with spastic quadriplegic cerebral palsy. With this new diagnosis, the family had guidance and direction on how to properly help Teddi reach her full potential.

Therapy at Children’s Specialized Hospital
Theodora DonnellyStacey was thrilled to hear of the Children’s Specialized Hospital Outpatient Center opening in Monmouth County. The timing perfectly aligned as Teddi was able to start outpatient therapy in August 2022. Three times a week, she meets with Physical Therapist Natalie Vulpis and Occupational Therapist Samantha Ciesmelewski.

During physical therapy, Teddi is working on independent standing and walking. She loves to go on the swing and the slide and use the Spider Cage. The Spider Cage is designed to help kids safely participate in everyday functional activities. “If we could go five days a week, I’d be there every day. Teddi loves going there,” said Stacey.

Physical Therapist Natalie shared, “Teddi is doing amazing in physical therapy. She has made tremendous progress since beginning with us. Teddi has mastered a beautiful reciprocal pattern with her posterior rolling walker, giving her much independence and confidence. She comes walking (sometimes running) into her sessions with her walker with the biggest smile on her face. It has been so rewarding to see her gain that confidence. Teddi even took 10 independent steps in her last session!”

During occupational therapy, Teddi has been incorporating upper extremity strengthening, sensory activities for increased body awareness, and fine motor activities to help her become more independent, manipulating toys during play and feeding herself using a fork and spoon.

Theodora DonnellyTeddi’s Occupational Therapist, Samantha, added, “She is one of the hardest workers I know! When she first started, Teddi would become frustrated during play, and it was more of a challenge than fun. I have seen so much growth in her fine motor, play, and problem-solving skills. She now is always so happy and excited to play. It is so amazing to see the joy on her face when she is successful with something new. She is now starting to use a spoon during meal times to feed herself a portion of her meal, and I feel like it’s only a matter of time until she is independently feeding herself an entire meal. I am so excited to continue working with her as it is amazing to see her hard work really pay off.”

“From August to now is a totally different child, especially with her abilities, and she’s so close to being independent with walking. She’s finding her independence and strength. She’s so happy now and feels so good about herself,” says Stacey.

To ensure Teddi was adequately supported with the correct walker enabling her continued road to independence, she visited CSH’s Rehabilitation Technology in Toms River to get fitted for her walker. Stacey highlighted, “We even had such a great experience in Toms River. It was so seamless.”

Theodora Donnelly

Embracing Independence
Theodora DonnellyWhile the diagnosis is recent and Teddi is still finding her way, her family and therapists are thrilled to see everything she has accomplished so quickly.

“Outside of therapy, Teddi hasn’t seen another child with a walker, and we don’t really know any children with cerebral palsy. So, we did not have much awareness. I didn’t know what her life would be like or what would happen after this diagnosis. But seeing how much independence and strength she’s gotten is inspirational. She used to have to be carried or pushed in a stroller everywhere. Now she’s standing and using her mobility,” said Stacey.

Teddi has even been an inspiration for her 11-year-old sister, Melanie. Melanie has her heart set on being a pediatric anesthesiologist. Stacey says, “Melanie always says that she thinks of all the people who took care of Teddi and how each person played an important job, but it must have been the most important to be her anesthesiologist, and that’s what I want to be.” Melanie and Teddi do everything together, from hands-on activities like puzzles to taking walks outside. When Teddi isn’t dressing up in her favorite Frozen attire or singing songs at the top of her lungs, she’s hanging out with her big sister.

When asked what her greatest hope is for Teddi, Stacey shared that she hopes Teddi “gains full independence with her walking and eventually becomes Supreme Court Justice, Theodora Donnelly. There’s no cap for her.”

For families facing a similar diagnosis, Stacey’s advice is “find another family, peer or parent to talk to, do your research, but you still need to talk to someone in a similar situation to fully grasp what your child and you as a parent are facing. It’s nice to connect; the more you know, the more support you have. Asking questions is worth more than anything you can read on the internet.”

Teddi will continue her weekly physical and occupational therapy appointments at Children’s Specialized Hospital in Monmouth County. Since she’s making significant progress with physical therapy, her twice-a-week sessions are looking to be reduced to once a week. Teddi’s Physical Therapist, Natalie, says, “I know she is going to do big things.”