Troy’s Challenges€¦ · one month head ultrasound, we found out our baby has Periventricular leukomalacia (PVL), a type of brain injury. Along with developmental delays from PVL,

Our “Baby Boy Troy” was born prematurely on August 17, 2012 at 29 weeks and weighed only 2lbs., 6oz.

At just two weeks, Troy became very sick and developed a blood infection. Because of this, he had to go back on the ventilator and had multiple blood and platelet transfusions. But our little fighter pulled through as always and beat the odds. At his one month head ultrasound, we found out our baby has Periventricular leukomalacia (PVL), a type of brain injury.

Along with developmental delays from PVL, Troy has also been challenged with Cerebral Palsy Spastic Quadriplegia, Infantile Spasms and Cortical Vision Impairment. He keeps busy with 12 therapies a week and counting!

Troy has severe gross motor delays and will require extensive therapy. He also requires adaptive equipment such as a wheelchair and stander, etc. Troy’s conditions are chronic and will require lifetime specialized care and assistance.

Although we were heartbroken with the news, we have faith in our little fighter and know that he will get through this as he has everything else.

This is Troy’s Journey. You will see his challenges, but mostly, be amazed by his accomplishments. He is our miracle and we want to share him with you.

We hope you all will learn as much as we do from our little fighter Troy on his journey.

Troy’s Challenges Periventricular Leukomalacia (PVL): Diagnosed at his 1-month head ultrasound while still in the NICU. Periventricular leukomalacia (PVL) is a type of brain damage that involves the periventricular white matter of the brain. Damage to white matter results in the death and decay of injured cells, leaving empty areas in the brain called lateral ventricles, which fill with fluid (a condition called leukomalacia). The brain primarily consists of white matter and gray matter. Gray matter has neural cell bodies, which can initiate nerve impulses, while white matter transports impulses between gray matter cells. The periventricular white matter that surrounds two horseshoe shaped cavities in the brain is primarily responsible for the transmission of nerve impulses that control motor function. Damage in this area can result in spasticity and intellectual impairment.

Cerebral Palsy Spastic Quadriplegia: Diagnosed January 2014. Quadriplegia refers to a type of spastic cerebral palsy in which all four limbs are affected. Like other types of spastic cerebral palsy, quadriplegia is marked by stiff or permanently contracted muscles. However, the severity of the condition will vary from child to child. Those with moderate spastic quadriplegia may be able to sit by themselves, walk short distances and perform similar tasks, while those with more severe cases tend to have great difficulty with the various aspects of day-to-day life. At this point, doctors cannot say if Troy will ever be able to walk or even talk. We just need to provide him with all the resources and opportunities to be able to get stronger and defeat all odds. Regardless of the severity, Troy will face a lifetime of physical and emotional struggle.

Cortical Vision Impairment (CVI) is defined as bilaterally diminished visual acuity caused by damage to the occipital lobes and/or to the visual pathway. CVI is associated with inefficient, disturbed visual sense because of the widespread brain disturbance. Due to his CVI, Troy has a difficult time processing visual input. Troy works with a teacher of the visually impaired for 2 hours each week to address his visual development and to stimulate his functional vision.

Infantile Spasms: Diagnosed August 2013. Infantile spasms are classified as a catastrophic childhood seizure disorder, and it’s not because of the way they look, but because Troy is now threatened with a very poor developmental outcome. The spasms consist of a sudden jerk followed by stiffening. Each seizure lasts only a second or two but they usually occur close together in a series. Troy also shows a specific pattern on EEG testing called hypsarrhythmia (chaotic brain waves).

Gastroesophageal Reflux Disease (GERD) is a condition in which the stomach contents (food or liquid) leak backwards from the stomach into the esophagus (the tube from the mouth to the stomach). This action can irritate the esophagus, causing heartburn and other symptoms.

About Cerebral Palsy Spastic Quadriplegia

Quadriplegia is a form of cerebral palsy that is characterized by the lack of the ability to move or feel both arms, both legs, and other parts of the body affected. Quadriplegia in cerebral palsy is caused by an injury to the brain, which sends messages to body parts important for movement and sensation.

Spastic quadriplegia is the most severe from of cerebral palsy in which all four limbs and the trunk are affected. Children with spastic quadriplegia usually have several compounded disabilities including cognitive, physical and social limitations.

A number of medical disorders are associated with cerebral palsy including: developmental and mental impairment and delay, seizures or epilepsy, growth problems, impaired vision or hearing, and abnormal sensation or perception, problems with muscles that control the mouth and tongue, and difficulty in speaking.

People with spastic quadriplegia may have great difficulty swallowing and this can lead to respiratory difficulties if food is aspirated.

Because of the swallowing difficulties, proper nutrition is also a concern. In addition, this form of CP makes the person especially prone to bladder and bowel difficulties.

Prone to aspirations, GI problems, seizures.

A child with severe spastic quadriplegia like Troy will not be able to walk even with a walker or other form of assistance, can not move independently into a wheelchair, will have difficulty sitting, and usually is not capable of feeding himself.

Quadriplegia is an extremely difficult form of cerebral palsy to deal with. Children with Cerebral Palsy require life long care. The dedication of a family and healthcare provider is critical for a quadriplegia cerebral palsy patient's well being.

The average lifetime cost for a person with cerebral palsy totals nearly $1 million over and above the costs experienced by a person without the disability.

Your Support & Donations Go a Long Way for Troy!

It is very crucial and important for Troy to receive as much therapy and aid as possible, especially during these early years because children are more able to adapt and respond to therapy at an early stage and during such a crucial developmental stage.

Private Care for Troy – Troy’s challenges do not allow him to enroll in a traditional day care program. Troy needs specialized home care on a daily basis while both parents are working. Private home care is not covered by insurance.

Medical Expenses – Some medical expenses are partially covered by insurance, however, many are not covered at all. In addition, there are high deductibles and coinsurance expenses that are paid out of pocket. You can imagine what a sick child’s doctor’s visits can cost, now imagine having to meet deductibles and pay co-pays for more than a dozen doctors and therapists!

• Pediatrician • Neurologist • Registered Dietitian • Pediatric Physiatrist • Pediatric Ophthalmologist • Feeding & Swallowing Pediatrician • Developmental and Behavioral Pediatrician • Occupational Therapist • Vision Therapist • Physical Therapist • Speech Therapist • Pediatric Gastroenterologist • Aqua Therapist

Physical and Occupational Therapy – Physical therapy helps Troy acquire gross motor skills. Occupational therapy focuses on the development of fine motor skills and adaptive/self-help skills. A co-pay is required for each of these two weekly therapy sessions.

Early Intervention – Early intervention is a system of services for children under the age of three with developmental delays or disabilities. A co-pay is required for each of Troy’s nine early intervention therapy visits per week.

Aqua Therapy – Aqua therapy is one of the best environments for a child with cerebral palsy to improve physical functioning, especially if the child is not ambulatory, like Troy. The water is known for restorative and detoxifying properties, provides buoyancy that makes aerobic and anaerobic exercises easy to perform effectively, and safely. A co-pay is required for this weekly session.

Hippo Therapy – Hippo therapies give special needs and at-risk children like Troy a unique opportunity to ride, care for, and interact with horses. Their riding and non-riding activities enhance Troy’s physical, social, and emotional well-being in a safe, nurturing farm environment.

Early Enrichment Program at The Children’s Therapy Center – This program is designed to stimulate development in the areas of language, fine and gross motor, social, emotional, and daily living skills. Since intellectual growth is thought to be most rapid from birth to 3 years of age, early intervention is essential for children with developmental delays. Troy has three two-hour sessions per week at $441/month, which is not covered by insurance.

KetoCal Formula – Troy’s diet includes this special formula that requires a doctor’s prescription. We order directly through the manufacturer and it is not covered by health insurance. Troy goes through one case every two weeks at a cost of $141 per case. He will remain on this diet until he is almost 4 years old.

Botox – Botox is a therapeutic muscle-relaxing agent that reduces the rigidity of muscles or unwanted spasms in a specific muscle. Botox only affects the muscles that are injected and once the muscles are relaxed, therapists are able to stretch the muscles and stimulate normal growth.

Specialized Equipment and Toys – Equipment, toys, and other products enable Troy, who has physical challenges, to communicate, learn, work, play, and function more easily, effectively, and enjoyably in the world. We are working to improve the quality of life for Troy, regardless of his disabling conditions. Prices can vary greatly, are NOT covered by insurance, and must be paid out of pocket. As Troy grows, the equipment will need to be replaced.

• Pediatric Elbow Immobilizers: $39 • Pediatric Leg Immobilizers: $44 • Pediatric Wheelchair: $5,212 (insurance covers a small percentage) • Pediatric Bathing System: $457.20 (insurance covers a small percentage) • Orthotics – Troy uses ankle foot orthosis (“AFOs”) to control position and motion

of his ankle and compensate for weakness. • Pediatric Supine Stander : $1,026.82 (insurance covers a small percentage) –

Positioning someone with disabilities in a standing position is the first step to facilitating bone and muscle development and maintaining range of motion, in addition to encouraging better functioning of the body’s internal systems. The six “B’s” that benefit from standing: bones, breathing, blood, bowel, bladder, and brains.

• Gait Trainer: $3,053 (insurance covers a small percentage) – A fully functional gait trainer provides full or partial weight-bearing opportunities to improve walking ability. It will improve cognition, muscle development, skeletal growth, and increased bone density, and social development and integration

• Benik Vest: $165.95 (out of pocket) – A deep pressure vest is designed to provide constant, even pressure to children. They wrap around the child providing proprioceptive feedback that promotes self-calming, focus, balance, and increased body awareness.

• Weighted Blanket: $138.90 (out of pocket) – This blanket provides gentle pressure that hugs the body to produce a calming and relaxing effect. It will help relieve stress to obtain the sleep he desperately needs.

• GoTo Seat by Firefly: $265 (out of pocket) – The GoTo Seat is a postural support seat that lets Troy participate in all those moments that make our family life special. Its’ flexibility of design allows it to be fitted safely to any standard chair, supermarket cart, on planes, swings, and more. It makes daily tasks easier and means Troy won’t miss out on anything.

• UpSee by Firefly: $489 (out of pocket) – UpSee is a mobility device that lets Troy, who has motor impairment, stand and walk with the help of an adult. It makes play and participation possible right now. When Troy is motivated to explore, move, and weight-bear, it creates a real possibility for long-term development.

• Car Lift for Personal Vehicle – Soon, Troy will be too heavy to pick up and carry. He will need a specialized lift for him to be able to get in and out of a vehicle.

• Sensory Starter Kit: $102.95 (out of pocket) – These top-selling sensory input products help calm, soothe, and inspire creativity.

• Oral Motor Starter Kit: $49.95 (out of pocket) – These items offer oral stimulation through chewing and biting, speech therapy, and self-discovery.

• SpinsationZ Rotation Boards – Vinyl Rotation Platform: 192.95 – Integrates vestibular and proprioceptive responses to improve muscle tone and balance.

• Roch & Roll with Me – Vibration, Movement & Musical Starter Kit: $119.95 – The items in this kit allow for creative movement, active sitting, and imaginative play. Troy will learn about and practice transitioning between activities using soothing vibration.

We will not give up hope on Troy. We strive to give him every opportunity possible to get stronger and build on his cognitive and gross motor skills. Medicine and technology

are evolving every day and years from now there may be something available for him that isn’t here today. As his parents, our goal is to ensure that he will be healthy and

ready to embrace any new options that the future may hold. –Tatiana & Jason