Xavian’s Story: Beating the Odds of a Brain Injury

By‎: TELETONUSA / 28-07-2022

Xavian was just a toddler when he fell into the pool and suffered a brain injury due to a prolonged lack of oxygen. He was visiting Las Vegas with his family for a baptism when the incident occurred. Xavian’s grandmother, Leticia, said he wanted to go in the pool one morning, so she got him ready to swim.

Later that day, after swimming, she sat Xavian in the living room while she went to the kitchen for a few minutes. Suddenly, she heard, “Mom, he is not there.” Leticia frantically searched for Xavian and found him lifeless in the pool.

“At that moment, I felt like I was dying,” Leticia says. “They couldn’t make him come back; they shocked him and nothing.”

Leticia has a picture of the Virgin Guadalupe in her home. Whenever Xavian saw the picture, his grandmother would say, “‘ Look, it’s Lupita. It’s the Virgin of Guadalupe.’ I would say, ‘Tell Lupita good night,’ and he would say, ‘night night Pita, night night Pita.'”

Leticia prayed to the Virgin Guadalupe on the day Xavian fell into the pool.

“I asked the Virgin of Guadalupe, ‘Please leave him with me. Please do not take him away from me. I will do everything possible and give everything I have to him, as long as I live.’ I think God heard my prayers because he left him here with me.”

Today, Xavian needs help performing everyday functions. The Children’s Rehabilitation Institute TeletonUSA (CRIT) has been working with Xavian to help him re-learn how to use his muscles.

“I received a call that CRIT had a space for Xavian,” Leticia says. “I had been calling all the time. I would call every week in hopes of getting him treatment there. We were so happy when we got the call because we were going to go see the place that everyone says is magical.”

Leticia and her husband, Jaime, drove 18 hours to get their grandson treatment at CRIT.

“I said to myself, ‘if my little boy has been fighting so hard, why wouldn’t I do the same?’ As long as he keeps fighting, I will be right by his side fighting with him.”

After just two weeks of receiving intensive treatment at CRIT, Xavian began moving his arms and legs, improved his head control and alertness during transitional movement activities, and his sitting tolerance and positioning.

At CRIT, medical staff provides reports and information to each family so they can continue facilitating rehabilitation at home. Today, Xavian’s grandparents demonstrate good handling skills, are now knowledgeable about physioball and mobility activities and can facilitate sitting activities with their grandson.

Additionally, Xavian’s grandmother created an at-home gym that plays an active role in Xavian’s daily care.

Pushing the Limits of Arthrogryposis

By‎: TELETONUSA / 20-07-2022

Arthrogryposis multiplex congenita (AMC), or arthrogryposis for short, is a diagnosis characterized by multiple joint contractures or stiffness of the joints. A contracture occurs when a joint stiffens, resulting in a fixed bent or straight position and restricting its overall movement.

With AMC, contractures occur before birth and are non-progressive, resulting in weakness throughout the body. Because of the number of joints affected in each individual, the severity level will vary. In some cases, as few as 2-3 joints are affected. In other cases, all joints are affected, including the jaw and spine. However, the most affected are the legs and arms, and the first seems to be the most affected overall.

The cause of AMC is ultimately unknown. However, in some cases, decreased movement of the fetus in utero may have been the cause of this diagnosis since it is essential for the development of joints. Without it, connective tissue forms around the joints restricting movement, which ultimately causes the joints to stiffen.

At CRIT, patients with AMC benefit from rehabilitation services such as physical, occupational, and speech therapy. The treatment provided by our therapists helps to maximize the range of motion throughout all joints, improve overall functional mobility, and increase independence with activities for daily living.

What is Spina Bifida?

By‎: TELETONUSA / 12-07-2022

Spina bifida is a neural tube defect that can be determined at birth. This condition occurs when the neural tube does not completely form and, therefore, does not close all the way. There are three types of spina bifida: myelomeningocele (the most severe), lipomeningocele, and spina bifida occulta (the mildest).

Most often, spina bifida will result in a muscle imbalance in the legs. This imbalance can result in future musculoskeletal issues, such as dislocated hips, joint contractures, and clubfeet.

To help you better understand this condition, this article will cover the different types of spina bifida, associated risk factors, and treatment.

Three Types of Spina Bifida

1. Myelomeningocele

Myelomeningocele is a defect that occurs during the development of the brain and spinal cord (also called the neural tube). According to Johns Hopkins Medicine, this is the most common type of neural tube defect.

This condition is a sac-like area filled with fluid and damaged nerves. Babies born with myelomeningocele typically show this fluid-filled sac near their back, without any skin covering.

The sac protrudes through the skin because the spinal bones fail to form correctly and do not close around the spinal cord. Because the nerves within the sac are damaged, the baby is sure to have moderate to severe disabilities ranging from being unable to use the bathroom to not being able to walk.

2. Lipomeningocele

According to the Center for Disease Control, Lipomeningocele occurs when “a sac of fluid comes through an opening in the baby’s back. But the spinal cord is not in this sac. There is usually little or no nerve damage. This type of spina bifida can cause minor disabilities.”

With this type of spina bifida, the sac does not protrude through the skin but can be seen as a lump along the center of the back.

3. Spina Bifida Occulta

Spina bifida occulta rarely results in any noticeable symptoms because the spinal cord and contents are undamaged. According to Johns Hopkins Medicine, “A child with this finding on an X-ray is expected to have no physical limitations, muscle weakness or increased risk of developing progressive spinal pathology.” A person could live their entire lives without knowing they have spina bifida occulta.

Signs and Symptoms of Spina Bifida

Signs and symptoms of spina bifida include:

A defect along the spine or cystic spinal cord lesion
Elevated maternal alpha-fetoprotein
A fatty or fluid-filled mass at the lower back
A hairy patch or lumbosacral skin marking
Weakness in the legs

Spina Bifida Risk Factors

Spina bifida risk factors include:

Having a child or sibling with spina bifida
Maternal spina bifida
Not enough folic acid before and during pregnancy
Exposure to certain medications while pregnant

Spina Bifida Treatment

If a baby is born with open myelomeningocele, a neurosurgeon will perform surgery within 48 hours. The surgery closes the area to protect the nerves from further damage and the baby from infection.

The related musculoskeletal imbalances can be managed with physical therapy. The exact type and duration of physical therapy will vary from patient to patient, but a typical regimen includes strength training and stretching. Some patients may be required to wear braces to support the knees and ankles or surgery to correct bone structure.

Spina bifida patients often develop pressure sores from sitting for long periods or using braces or crutches. Therefore, daily skin checks and regular movement are necessary.

The Children’s Rehabilitation Institute TeletonUSA

The Children’s Rehabilitation Institute TeletonUSA (CRIT) is a 501(c)(3) non-profit organization offering comprehensive rehabilitation services for children with neurological, muscular, and skeletal disabilities. Contact us today to learn how we can help your child live a healthy and happy life with spina bifida.

From Your CRIT Counselor: Acknowledge Your Strengths

By‎: TELETONUSA / 07-07-2022

“Behind you, all your memories. Before you, all your dreams. Around you, all who love you. Within you, all you need.” – Lilli Vaihere

This quote speaks about our past, our future, and our present. What caught my attention was “Within you, all you need.” We cannot change what happened yesterday. We can plan for tomorrow but truly do not know what will happen. What is real is this moment. What you need today, right now, to live your life is within you. You have what it takes to live, not just to exist.

We know that life is not easy. It resembles a roller coaster ride with its ups and downs and a few spins along the way. We have moments of joy and laughter and others of sheer terror and pain.

The qualities and characteristics you possess to live a better life were developed through your past experiences and will help you achieve your dreams and face your future. Each day gives us the opportunity to utilize our qualities and improve others. Yes, we acknowledge we have areas for improvement. For today, let’s focus on our strengths and qualities such as resilience, perseverance, dedication, and adaptability. Negative self-talk does not improve our situation or self-esteem.

I encourage you to reflect, identify and acknowledge the strengths that are within you. Those strengths will help you through the roller coaster of life. Celebrate your memories, your dreams, and the people who love you. Most importantly, celebrate yourself.

Meet Krestalenn, and Her Journey with Traumatic Brain Injury

By‎: TELETONUSA / 28-06-2022

When Krestalenn was just an infant, she survived a head-on collision that left her paralyzed on her right side and blind in one eye. Questions were swirling around Krestalenn’s condition and recovery for many years – Would she learn how to walk on her own? Would she be able to speak? Will she be able to play with other kids her age?

Because Krestalenn suffered a traumatic brain injury (TBI) at such a young age, her family was forced to wait and see how her injuries would affect her development.

Krestalenn’s grandparents became her legal guardians when she was ten months old. Knowing that Krestalenn would need physical therapy to guide her development, her grandparents sought the help of Children’s Rehabilitation Institute TeletonUSA (CRIT).

Today, Krestalenn is walking independently, expanding her vocabulary, and learning how to swim.

Speech and Physical Therapy with CRIT

Krestalenn visits CRIT twice a week for her speech and physical therapy appointments. At this point in her life, CRIT is a part of the routine her grandparents created for her. Krestalenn’s grandfather says that his granddaughter operates on a tight schedule comprising school and CRIT therapies and appointments.

With regular physical and speech therapy appointments at CRIT, Krestalenn is learning how to walk, use her hands, and verbally communicate with others.

“Krestalenn is really a fighter,” her grandmother says. “She’s a miracle.”

When Krestalenn first came to CRIT, she hadn’t been speaking for over a year. Her physical development was behind others her age.

“Before CRIT, after the accident, she was quiet for about a year and a half,” her grandfather says. Things look – and sound – different today, however. “She’s talking better. She’s talking in sentences.”

One of Krestalenn’s favorite phrases is “how much?” because every time someone says “I love you” to her, she asks, “how much?” People typically answer her with “this much,” extending their arms as wide as possible. Her vocabulary has expanded considerably, but “how much?” is the phrase that sticks with her.

“[CRIT has] everything in one building,” her grandmother says. “The outcome is unbelievable. She takes off when we put her in the walker. We have to run after her!”

What is a Traumatic Brain Injury?

According to the National Institute of Neurological Disorders and Stroke, a traumatic brain injury (TBI) is “a form of acquired brain injury [that] occurs when a sudden trauma causes damage to the brain.” In Krestalenn’s case, her TBI occurred due to a head-on collision.

Symptoms of a TBI vary, depending on the severity. A mild TBI can result in headaches and confusion, while a severe TBI can result in slurred speech, numb extremities, and loss of coordination.

Typically, there isn’t much to be done for a mild TBI as far as treatment goes. Severe TBIs are often treated with physical therapy, occupational therapy, speech/language therapy, physiatry (physical medicine), psychology/psychiatry, and social support.

Find Care at the Children’s Rehabilitation Institute TeletonUSA

Traumatic, Anoxic, and Hypoxic Brain Injuries Explained

By‎: TELETONUSA / 23-06-2022

Understanding the different types of brain injuries can help you seek the necessary treatment.

Traumatic Brain Injury

According to the National Institute of Neurological Disorders and Stroke, a Traumatic Brain Injury (TBI) is “a form of acquired brain injury [that] occurs when a sudden trauma causes damage to the brain.” A TBI may be the result of the head violently colliding with an object or when an object penetrates the skull and damages brain tissue. Symptoms of a TBI vary, depending on the severity. A mild TBI can result in headaches and confusion, while a severe TBI can result in slurred speech, numb extremities, and loss of coordination. Typically, there isn’t much to be done for a mild TBI, as far as treatment goes. Severe TBIs are often treated with physical therapy, occupational therapy, speech/language therapy, physiatry (physical medicine), psychology/psychiatry, and social support. The exact treatment plan will depend on a patient’s symptoms.

Hypoxic Brain Injury

A hypoxic brain injury occurs when the brain’s oxygen supply is severely diminished, but not completely cut off. This type of injury can be caused by “interruption of blood flow to the brain, such as cardiac arrest or strangulation, or from systemic derangements that affect the oxygen content of the blood,” according to this study. The same study states that “cellular injury can begin within minutes, and permanent brain injury will follow if prompt intervention does not occur.” Treatment for a hypoxic brain injury involves returning oxygen to the brain. Depending on the duration of hypoxia, psychological, neurological, and physical abnormalities may occur and persist even after treatment.

Anoxic Brain Injury

Anoxic brain injury occurs when the brain’s oxygen supply is completely cut off. It takes about 15 seconds without oxygen to lose consciousness and 4-minutes without oxygen for brain damage to occur. Clinical research indicates that individuals who sustain an anoxic brain injury exhibit “impaired memory, attention, and executive function, as well as slowed mental processing speed.” Treatment for hypoxic and anoxic brain injuries is the same.

Find Care at the Children’s Rehabilitation Institute TeletonUSA

The Re-Eval By CRIT: Season 2

Interviews include Certified Therapeutic Recreation Specialist, Natalie Klinsky discussing her role as a Recreational Therapist, and who may benefit from these services; 6-year-old Brooke and her mother, Natasha talking about how Recreational Therapy has helped them as a family.

After this, Berenice Escobedo, one of our Social Workers will explain how she provides community resources to our families to help navigate through their unique challenges that may arise as our patients transition into adulthood. Followed by Denny, one of our very own CRIT graduates, discussing the new stage in his life how he stays busy with community involvement.

Listen on Spotify here.