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Lillie’s Leap of Faith: From Cerebral Palsy Patient to Future Journalist

Lillie’s Leap of Faith: From Cerebral Palsy Patient to Future Journalist

by | Nov 15, 2024 | Neurology

As soon as you step through the doors at Scottish Rite for Children, patients and their families are immediately embraced by a culture dedicated to fostering lifelong connections. When a patient completes treatment, staying connected beyond their time at Scottish Rite remains fundamental.

Former patient 20-year-old Lillie, of Arlington, describes her care journey as transformative and miraculous. “I’ve found so many friends who were also Scottish Rite patients,” Lillie says. “We’ve been able to bond as patients and as people living with different abilities.” Lillie was diagnosed with Hemiplegic cerebral palsy (CP), a condition that affects the posture, movement and balance on one side. Her case of CP resulted in a limb difference in her left leg.

Lillie started coming to Scottish Rite in 2021 when she was a senior in high school. Her physician referred her for multidisciplinary care after noticing changes in her walking, a symptom of her limb difference that had started causing foot and ankle pain. Orthopedic pediatric surgeon Jaysson T. Brooks, M.D. performed a surgery called gastrocnemius recession – a procedure that lengthens the calf muscles and tendons. Then, Scottish Rite orthotists designed a custom ankle-foot orthosis to stabilize her ankle and foot. “From buying two boxes of the magical popcorn to updating Dr. Brooks on all the fun things I’m up to,” says Lillie. “Scottish Rite is a miracle to me.” 

The support she received from her Scottish Rite care team would ultimately prepare her for her next journey she would embark on – college. Her entire care team was invested in preparing Lillie’s condition for life at her college of choice, Texas Christian University (TCU). As a parting gift, Lillie received Scottish Rite’s Legacy Scholarship to pursue a degree in journalism and confidently chase her dreams. “Cerebral palsy may sound intimidating at first,” says Lillie, “But just know there’s a community of people with cerebral palsy who are scientists, comedians, journalists and more. We are here, we are brave, we are beautiful and we are limitless.”

Lillie has gone from undergoing surgery to now conquering the world of journalism. She aspires to ask questions about the world and write stories based on the answers, much like her fellow TCU alumnus and role model journalist Bob Schieffer. “To kids with CP, you are perfect,” Lillie says. “The way you walk is perfect, your wheelchair is cool, your leg braces are awesome and your surgery scars are epic! Being who you are is the ultimate superpower, and no one take that away from you.” We can’t wait to see the great things you accomplish, Lillie!

Levi Soars To Success With Take Flight

Levi Soars To Success With Take Flight

by | Oct 4, 2024 | Dyslexia & Learning Disorders

“We thank God for connecting us with Scottish Rite,” says Levi’s dad, Josh. “Levi was unable to recognize his letters when we first arrived, and now he’s reading chapter books.”

Nine-year-old Levi, of Arlington, is a creative spirit with a passion for reading. Each book offers him a chance to immerse himself in new adventures. With support from his family and care team at Scottish Rite, Levi is confidently navigating life with dyslexia.

Levi is the second youngest out of eight children, all homeschooled by their mom, Kelly. When it was time for Levi to start kindergarten, Kelly recognized his struggle with reading from her past experiences.

“Our second oldest daughter, Grace, was in first grade when my wife noticed she was having difficulty reading,” Josh says. “We were still living in Austin at the time, and Grace was diagnosed with dyslexia. We worked closely with a local language therapist to provide Grace with the tools she needed. She just graduated college in 2023!”

At age 5, Levi was evaluated by experts at Scottish Rite for Children’s Luke Waites Center for Dyslexia and Learning Disorders. After his assessment, Levi was diagnosed with dyslexia and attention deficit hyperactivity disorder (ADHD).

“If parents suspect there might be an issue, we encourage getting your child evaluated as quickly as possible,” Josh says. “Once you know dyslexia is the diagnosis, don’t panic. There is nothing wrong with your child. Your child’s brain just processes things differently. In fact, Kelly and I view dyslexia as a gift.”

According to the American Psychiatric Association, 5 to 15% of children have a learning disability, and approximately 80% of all children diagnosed with a learning disorder have dyslexia. Dyslexia is a condition which causes difficulty with reading and spelling. This results in a child’s trouble to read aloud, express themselves and connect sounds to written words or letters. ADHD is characterized by an inability to focus on one task and excess movement during tasks. Programs, like Scottish Rite’s Take Flight: A Comprehensive Intervention for Students with Dyslexia , are designed as an early intervention to equip children with essential learning strategies and boost their overall school performance.

“We were looking into finding private language therapy for Levi, just like we had done for our daughter,” Josh says. “It turned out there was an opening for Levi to enroll in the Take Flight program at Scottish Rite. We jumped at this chance.”

With help from his instructors and language therapists, Levi discovered what learning looked like for him. His writing, reading and math skills improved over the 2-year curriculum, and he began taking medication for his ADHD to help him focus on different assignments. Now, he has discovered a new passion for learning!

“We have seen a great progress since Levi started this program,” Josh says. “Levi’s language therapists helped him in ways we could only dream of. His confidence has grown exponentially as a result.”

Now in second grade, Levi has officially graduated from Take Flight’s program. His motivation to learn and passion for reading has only grown since then, and it is a gift to us to continue to watch him flourish!

 “At times, it brings tears to our eyes to hear Levi read,” Josh says. “He has come so far in such a short amount of time. We are incredibly thankful for the impact Scottish Rite made in Levi’s life.”

Nico is Spreading His Wings!

Nico is Spreading His Wings!

by | Sep 9, 2024 | Clubfoot & Foot Disorders

3-year-old Nico, of Mission, and his family travel more than 500 miles to receive treatment at Scottish Rite for Children. “We make that effort to come this far, because it’s worth our drive,” Nico’s mom, Mary says. Nico was diagnosed at birth with clubfoot and arthrogryposis — a rare condition that causes stiff joints. Mary found comfort in the arthrogryposis support groups she found online. Her conversations with other families led her to schedule an appointment for Nico at Scottish Rite.

Nico receives care from our experts in hand, clubfoot, occupational therapy and orthotics. Even when he’s facing a challenge, Nico’s joyful personality shines. He is always greeting and waving at everyone he meets at Scottish Rite. “I think Nico is going to grow up to be an entertainer,” Mary says. “He is such a social butterfly!” 
When surgery was proposed as part of Nico’s treatment plan, Mary felt assured. “We were always confident about surgery,” Mary says. “The outcomes our care team told us were always what we received.” Nico has had two surgeries to combat his arthrogryposis: an Achilles lengthening surgery on both legs in 2022 and a wrist surgery in 2023. 

Nico has made remarkable progress, and there is no stopping him now! Mary says she is thankful to Dr. Scott Oishi and Dr. Anthony Riccio for their attentive care. With their help, Nico can now walk by himself. He’s also working with occupational therapists Amy Sitabkhan and Grace Evansco to develop more independence by learning daily tasks such as eating and clothing himself. “I wish I could take Scottish Rite’s occupational therapists back home with us,” Mary says. “Everyone is so helpful, and we are so blessed.”

We like to say all our patients become part of the Scottish Rite family. For Nico, this is especially true. He and his family are now part of our Hand in Hand support group, and it’s been so fun to watch Nico come out of his shell. We look forward to seeing everything he accomplishes in the future!

 

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Spina Bifida Won’t Slow Sophia Down!

Spina Bifida Won’t Slow Sophia Down!

by | Aug 16, 2024 | Pediatric Developmental Disabilities

“I am just like the other kids,” 11-year-old Sophia says. “I just walk and do some things differently!”

At 18 months old, Sophia was diagnosed with spina bifida. Spina bifida is a condition that occurs before birth when a child’s spinal cord is not properly formed. This condition affects other body systems, such as the bladder, bowel and mobility in Sophia’s case. “Hearing the diagnosis of spina bifida was like a gut punch,” Katherine, Sophia’s mom, said. “It was easy to feel alone and overwhelmed, but it doesn’t have to be like that.” They re-located to Dallas and discovered the resources and supportive care Scottish Rite for Children offered spina bifida patients. “After our first appointment here, I was in tears,” Katherine says. “Sophia and our family were finally getting the support we needed.”
                                                                               
Because of its complexity, spina bifida requires a collaborative care team to help each child’s individual needs. Since 2017, Sophia has experienced care from various experts in Physical and Occupational Therapy, Orthotics and Prosthetics, Urology and Neurosurgery. “I have nothing but praise for the staff here,” Katherine says. “They are always so helpful whether it was during appointments or returning phone calls.” Sophia doesn’t mind her longer appointments either. She is always looking forward to visiting her favorite Scottish Rite staff members, like physician Richard Adams M.D., or making time to have fun on the playground.
 
Sophia faces her condition with fearless determination. Before Sophia was born, there was a high possibility that she would be wheelchair-bound for her entire life. Now, Sophia is moving around with walking devices, learning new skills and adapting her condition to swimming, riding her hoverboard and cheerleading. “She has come a long way from where we started,” Katherine says. “It would be easy for her to settle, but she wants to feel like every other kid.” Since 2022, Sophia has attended Camp TLC. As a camper, she gets to explore new experiences and make friends with other children like her. It’s clear there is no obstacle that Sophia cannot overcome!

Thanks to the unwavering support from her care team and family, Sophia can navigate life with spina bifida confidently. Katherine urges other parents with similar challenges to ask plenty of questions and seek out connections. “I would be lost without the Facebook groups and the amazing parents we’ve met,” Katherine says. “Don’t isolate yourselves; this is a small but incredibly supportive community!”

Share Your Story: Finding Hope and Staying the Course Through Perthes Treatment

Share Your Story: Finding Hope and Staying the Course Through Perthes Treatment

by | Nov 20, 2023 | Hip Disorders

Blog written by Megan, Garrett’s mom

In June 2022, Garrett developed a limp and complained about his right knee hurting. We went to his pediatrician for an X-ray after a few weeks of not getting any relief. He had just attended a basketball camp and is active in many sports.The knee X-ray in June showed no damage, sowe started some chiropractic care to stretch and see if we could determine what was causing his pain. After 6 weeks, nothing changed. Garrett would say that his hip was “tight,” but he said there was no pain.

Garrett had an MRI in August so we could determine the next course of action. It was in the MRI that it was discovered his femoral head was quickly deteriorating, and he had Legg-Calvé-Perthes disease. We went to a local hospital for a consultation, and my son was told not to walk on his own without the help of crutches. The word “nonweightbearing” was seared into our brains.

He started school four days later, and we had to urgently contact his school’s administration to discuss accommodations for him.  There was so much anxiety about attending school on crutches and being asked questions. Garrett didn’t want to tell anyone what was going on, and I dreaded the school year knowing this was going to be the most challenging thing he’d ever faced.

While our local health care options are great, we wanted to get a second opinion since this was such a devastating diagnosis for such an active and energetic kid. I started reading everything I could on Perthes disease. I was up late one night researching the disease, and I found some videos featuring Dr. Harry Kim with Scottish Rite for Children. He just seemed to be the expert in this condition, and I wanted nothing but the best care for my son. 

I requested an appointment online, and we were contacted the next day. Although we live nine hours away, we jumped at the chance to travel to Dallas and get a second opinion. I wanted to talk to a nurse to make sure we really should travel to see Dr. Kim. Despite some doubts, something kept gnawing on me to keep pushing. Dr. Kim’s nurse, Kristen, called me a few days later, and we talked about the situation. She asked me to get the X-ray and MRI files to her for Dr. Kim to review. Soon after, she called me and said Garrett had an advanced stage of necrosis, and he needed to be seen as soon as possible. She set an appointment, and we cleared our calendars to make it to Dallas for a perfusion MRI and consultation with Dr. Kim. 

Dr. Kim reviewed his MRI. Garrett’s femoral head had completely collapsed in a period of about four months. He was a more challenging case, but Dr. Kim felt like we could, with treatment and surgery, get the best outcome if we stayed the course. On our drive home, I remember telling my husband that any guilt I had for seeking additional opinions was gone the moment Dr. Kim started explaining the treatment options. He was both conservative in his explanation but also gave me a sense of hope, too. He was clear that Garrett would end up in a wheelchair for a while, and he would need surgery. He wanted to do a tenotomy and a bone-marrow drilling to relieve some of the inflammation and tightness and then apply a Petrie cast to keep the hip in a certain placement as the first step. I clearly remember crying with Garrett at the thought of this massive contraption on my child. Dr. Kim had an opening for surgery in one week, and we jumped at the chance to get started. 

The first surgery went as planned. Nothing can prepare a child for waking up and being in a double-leg cast. However, the care team at Scottish Rite was amazing from the beginning. The Child Life staff brought in a mobile game console pre-surgery, and Garrett played some video games to take his mind off of the surgery. The day after his surgery, Child Life took him to the playroom area with games, toys, art projects, etc., for a few hours, and it was a blessing for me to get some rest.

Dr. Kim checked on him, and Garrett felt like a VIP by ordering his meals via the phone. As we prepared to leave after a few days, the Occupational Therapy and Physical Therapy staff took great care to show us how to get Garrett in and out of our car and worked with us to get to the bathroom, use the new (and massive) wheelchair, and prepare ourselves to go home and manage this new lifestyle for the next six weeks. 

Garrett couldn’t go to school normally during that first casting. The classroom doors were not wide enough to accommodate the platform that his legs had to rest on in the wheelchair. Every time we had to move him, we had to pick him up, take off the platform, push the wheelchair through the door, reinstall the platform, and then put him back in the wheelchair. It really is as daunting as it sounds. My husband Chad and I were very worried about the social toll this would take on Garrett. His teacher and the school administration were helpful and even had some home-tutoring set up. Garrett went to school for about four hours on a Tuesday each week to get in math and reading instruction.

The six weeks passed relatively quickly, and we didn’t stay inside and stay home. Our family is busy, and that’s an understatement. We run a small business, we work at lots of festivals and events, and we were not going to let this disease just stop us in our tracks. We were determined to make sure Garrett still interacted with people and was part of our lives as always. We took him to events, and he ran the cash register. He went fishing with his cousins. We hosted a video game birthday party with his friends where we just let them take over the living room and stay up as late as they could binging on junk food.His first cast came off in mid-November. It was joyous, and he was able to stay cast-free through the holidays.

We traveled back to Scottish Rite in early January and met with Dr. Kim. Unfortunately, Garrett had developed some stiffness and inflammation, and we couldn’t do an osteotomy as soon as we hoped. After correcting some issues with his brace, Garrett was cleared for his osteotomy soon after. He had to have a triple hip osteotomy instead of a femoral osteotomy. It’s more invasive and requires two doctors to work together to perform the surgery. Dr. Kim’s amazing staff was looking at scheduling for us in advance and noticed there was one appointment available with both doctors … the next week. So, we made another quick trip home and prepared for surgery. 

Because the surgeons knew the danger of falling and damaging the work they were about to do, Garrett would have a spica cast that would encompass his right leg and entire torso. I thought Garrett was going to jump through the ceiling. I calmed him down and promised to get him to a Dallas Mavericks game eventually, if he would just understand that the doctors needed to do this casting to give his hip the best chance of recovery without damage. The surgery went well, and Garrett actually went to school five days a week for five weeks in his spica cast without issues.

Now, we are in the “waiting phase” of this dreadful disease. We hope the surgeries are done. We’re just waiting to see progress and bone growth. We hope surgery and casting is over, but we will follow Dr. Kim’s lead and trust his judgement. We pray every day for strength, patience, guidance and healing. We know this is out of our hands, and we are not in control, but we have picked the best team and talent to help us manage this difficult period. We can’t wait to return to the activities he loves. I know I will cry buckets of tears the day he steps back on the basketball court. As another Perthes mom told me, “This is a disease you never knew about and never thought you’d deal with, but here we are, and at least there are people surrounding you to help.” 

This past summer, Garrett went to Camp Perthes in Minnesota! He got to meet others with Perthes and spend five days at camp doing kid things. The camp was started by Earl Cole, the winner of Survivor: Fiji. Earl Cole had Perthes as a child and used some of his winnings to start Perthes camp. He’s an example of someone who went through this disease, and he wants to help others do the same. And Earl Cole was raised in Kansas City, Kan—-small world! Garrett had a wonderful time spending time with other Perthes kids, enjoying activities like canoeing and rope courses.

Garrett started beekeeping with his dad during the pandemic.  He was in first grade, and he has his own Facebook page where he captured his beekeeping adventures.  We plan to get back to his Itty Bitty Beekeeper page and keep chronicling his adventures when he is released from treatment. His page is here: https://www.facebook.com/ittybittybeekeeper. 

Right now, with Perthes disease, we allow him way more video game time than we want. However, it keeps him social and interacting with kids on the weekends when he would normally be at a sports practice or outing.  Once we get released from treatment, we will encourage him to return to his beloved sports.  He told him that his focus, when healed, is to become the best basketball player he can be.

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