Posts In: Beautifully Different


September 20, 2018 Beautifully Different, Children 0

Beautifully Different – Giovanni

Beautifully Different

A Project Celebrating Differences and Triumphs

Giovanni is Beautifully Differentjust

Meet Giovanni! This incredible 4 year old little boy was born at just 26 weeks, weighing 1 pound 5.2oz. He has a total of 22 diagnosis, Prematurity, Periventricular leukomalacia, Quadriplegic Cerebral Palsy (CP), and failure to thrive to name just a few. He spent the first 118 days of his life in the NICU and has undergone 10 different surgeries. Gio lives his life a little differently given his disability, limitations, and sensory challenges. Gio DOES have full range of motion and use of his left arm & hand. He also has HKAFO’s (braces) for his feet so he is able to walk in his gait trainer (more supportive walker). Gio also has a power chair that doesn’t play a big role just yet, but will eventually be incorporated in daily life since he fatigues very easily. He has learned how to maneuver himself around the house by scooting on his back.

Giovanni is Beautifully Different!

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The Diagnosis

Gio’s family learned of his brain damage about half way through his NICU stay. His routine head ultrasound was showing “white space “ bilaterally in the frontal lobes. This is called PVL (periaventricular leukamelacia). The damage is grade 3-4 (moderate to severe). This is the result of deprived oxygen to the brain when both of his lungs collapsed 24 hours after birth. This news was absolutely devastating for his family. What made it even harder for his them is not knowing how it would effect him, as every child is different. The only thing the doctors were correct about given this diagnosis, is how his legs are affected.

A Day in the Life of Giovanni

Gio’s daily lifestyle is far different from that of a typical child. Gio needs a lot help physically. He practically lives at therapy! He has some sensory issues so he has to take life and life activities one day at a time. Eating has always been a struggle. Due to his CP and constant burning of calories , he requires triple the amount of your average toddler. We incorporate therapy in every day life when he is not physically at therapy. Constant practicing of fine motor skills , crafts & Play that require use of both hands, Core building strength, etc. According to Gio’s Mom, what is most heart breaking is Gio so badly WANTS to walk, play, jump, sit, etc … and can comprehend that he can’t. Almost everything that comes with children naturally is a struggle for him. Gio has had to learn (chewing, drinking , grasping, balancing, feeding himself, etc) He knows no different though as his family has always treated him as a typical child!

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Loving. Determined. Brave.

One absolutely amazing thing about Gio is that he can light up a room from the second he arrives! He is definitely a charmer! He has a beautiful a personality and is so smart! Gio ALWAYS has a smile on his face no matter what the circumstance. Gio is defying the odds! Everything the doctors warned & told them he wouldn’t do… he is doing! He can eat independently, clap, color, walk with the proper help and equipment, talk, read, has an amazing sense of humor and personality, comprehends and is aware of his surroundings, he is amazing! Gio truly is an inspiration and has taught his family to NEVER take even the simplest of tasks for granted. He is such a happy little boy, and even though I only spent 15 minutes with him and his parents, you could see the love and support within their family. I am so happy to have met this incredible little boy!

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September 12, 2018 Beautifully Different, Children 2

Beautifully Different – Naomi

Beautifully Different

A Project Celebrating Differences and Triumphs

Naomi is Beautifully Different

Meet Naomi! Naomi is a beautiful 16 year old young lady who has a dual diagnosis of Autism and Attention-deficit/hyperactivity disorder (ADHD). While the primary components of ADHD and Autism are different, there is some overlap in symptoms. Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. Where as a person with ADHD has differences in brain development and brain activity that affect attention, the ability to sit still, and self-control. Naomi is Beautifully Different!

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The Diagnosis

Officially, Naomi received her diagnosis of Autism at the age of 10. She started seeing a neurologist at the Cleveland Clinic when she was 4. After finishing early intervention services and still having difficulty her parents sought answers from a neurologist. Between the age of 4-5 and 5 she was diagnosed with ADHD. They still had concerns with her processing and wondered why she still was having difficulties. She would either get so upset from things that overwhelmed her or she would shut down to the point they thought she was having seizures and was assessed for that. She struggled in school and when she was in larger groups. After slow progress and continued questions they pursued an evaluation with the behavior specialists at Cleveland clinic and confirmed her diagnosis of ADHD as well as Autism.

A Day in Naomi’s Life

As a baby Naomi was very difficult to soothe. She was comfortable with her mom and dad, but was often anxious and easily upset with others. She had disrupted sleep patterns from infancy through her preschool years. Naomi had difficulty with her overall development.

In school, Naomi often finds it hard to concentrate. It take her longer to put together all the steps it takes to complete tasks while filtering out distractions. She has to work extra hard to read people cues and to understand the nuances of life including sarcasm and others facial expressions. She has worked hard to practice having eye contact and learning what we refer to as the soft skills.Naomi often needs extra time to write as this is a difficult task to complete. Her parents are excited she can now take notes on her chrome book and typing is easier!

“It makes me feel different and it is hard to socialize. But I know I have the potential to do it.” -Naomi

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Unique. Endearing. Patient.

Naomi is such a sweet and amazing young lady! She has lots of fun interests too! Some of her interests include Dr Who and her favorite actor David Tennant. She even got to hang out with him a bit longer since she was not catching the urgency of his handlers to keep the line of comic con picture seekers moving! Naomi works very hard, and she is a true inspiration to her family, and everyone’s life she touches. Within Naomi is an old soul that sees the world differently. She brings music to her home and a different perspective to her family’s lives.

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September 9, 2018 Beautifully Different, Children 0

Beautifully Different – Haylie

Beautifully Different

A Project Celebrating Differences and Triumphs

Haylie is Beautifully Different

Meet Haylie! Haylie is a sweet, energetic, amazing little girl, who has Pendred Syndrome. Pendred Syndrome is a rare genetic disorder characterized by severe to sensorineural hearing impairment and a malformation of certain bones in the inner ear. Pendred syndrome is a result of a defect in the production of the thyroid hormone, which controls the metabolism and helps regulate body growth. Haylie’s hearing declined after birth, but she was not officially diagnosed until she was 2. Haylie is Beautifully Different!

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The Diagnosis

Though Haylie wasn’t diagnosed with Pendred Syndrome until she was two, it all really began at birth. In the hospital, all newborns are given a hearing test, Haylie did not pass hers. Through many tests and sedated Auditory brainstem response tests she was finally diagnosed at 2 years old with bilateral sensineural hearing loss. Her hearing started getting progressively worse in a short period of time so her parents opted to get an MRI done which showed Haylie has enlarged vestibular aqueducts which cause balance issues. They decided to do genetic testing and she also came back positive for Pendred Syndrome which causes hearing loss and thyroid problems. For the past year Haylie has seen many doctors and things have popped up through the year that just get added to the list of what makes Haylie-Haylie!

A typical day for Haylie

Haylie has to wear hearing aides in both ears. Her communication and speech are not like other typical children her age. She goes to speech therapy and she works hard everyday with using words or sign language. Haylie has so much energy she can do laps around others her age! She is very active and loves water activities, she can be at the playground running around for hours to burn off some energy and still be energized!

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Fearless. Energetic. Happy.

Haylie is such a happy child, very friendly towards others and is a great little helper! She loves making new friends! Also, she finally has started to leave her hearing aides in a few months ago and started wearing charms on them. (cute little butterflies!) She is little miss independent. Haylie handles all of her therapies like a champ! She reads lips, which is very helpful for her communication! Haylie is an amazing and inspirational little lady!

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August 26, 2018 Beautifully Different 0

Beautifully Different – Jillian

Beautifully Different

A Project Celebrating Differences and Triumphs

Jillian is Beautifully Different

Meet Jillian. This amazing girl is your typical amazing 11 year old girl, in almost every way. However, in May of 2017, Jillian was diagnosed with Epilepsy. Epilepsy is a chronic neurological disorder in which the normal chemical and electrical activities between nerve cells in the brain (neurons) become disturbed. This disturbance causes the neurons to fire abnormally, causing seizures. In a seizure, many neurons fire at the same time, much faster than usual, up to 500 times a second. Over a lifetime, 1 in 26 people will develop epilepsy at sometime in their life. Jillian is 1 in 26, and Jillian is Beautifully Different!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Epilepsy

Last May, Jillian had a seizure after a soccer game, then she had another seizure after basketball camp a week later. She went through many tests and was finally diagnosed with epilepsy. Her doctors have struggled to find any medicine that can control the seizures. She has had to miss countless sports practices and games and is struggling in school. Also, Jillian has had auras almost daily. An aura is a feeling, experience, or movement that just seems different. It can also be a warning that a seizure is going to happen.

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Epilepsy

Sweet. Warrior. Energetic.

Jillian lives to play sports! She has always wanted to be a professional soccer player when she grows up! However, her epilepsy has caused her to take a temporary step back from sports as she has had seizures during soccer practices, soccer games, and basketball games. She continues to amaze her family with her strength through all of the hospital stays, the millions of tests, the numerous seizures, and the drastic change this has made in her life! She is their epilepsy warrior!!!!

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August 23, 2018 Beautifully Different, Children 0

Beautifully Different – Amelia

Beautifully Different

A Project Celebrating Differences and Triumphs

Amelia is Beautifully Different

Meet Amelia. Amelia is a true warrior and a survivor. Born at just 23 weeks and weighing only 1 pound 2 ounces. Amelia is a surviving twin. Her sister, Grace, was with her for only 2 hours after birth. Amelia has a grade 4  and a grade 2 intraventricular hemorrhage (brain bleed), Hydrocephalus, Hemiplegic Cerebral Palsy, CVI (cortical vision impairment), and chronic lung disease. Amelia spent 176 days in the NICU. During that stay she had 6 surgeries, most pertaining to her hydrocephalus. She then had 4 more surgeries after coming home, for a total of ten surgeries. She will be scheduled for surgery number eleven this fall to remove her tonsils & adenoids.Through all this, she is still such a happy, smiley, adorably amazing 3 year old girl! Amelia is Beautifully Different!

The Diagnosis

Intraventricular Hemorrhage (Brain Bleed)

Amelia was diagnosed with Intraventricular Hemorrhage at two weeks old. Intraventricular hemorrhage (IVH) is bleeding inside or around the ventricles, the spaces in the brain containing the cerebral spinal fluid. It is most common in preemies with low birth weights (under 3.5 pounds) A grade 2 brain bleed is when bleeding also occurs inside the ventricles. A grade 4 brain bleed is when bleeding into the brain tissues around the ventricles.

Hydrocephalus

Hydrocephalus is the buildup of fluid in the cavities (ventricles) deep within the brain. The excess fluid increases the size of the ventricles and puts pressure on the brain. Amelia’s Hydrocephalus was caused by her Intraventricular Hemorrhage. A shunt is surgically placed in the brain. It consists of a long, flexible tube with a valve that keeps fluid from the brain flowing in the right direction and at the proper rate (Mayo Clinic).

Hemiplegic Cerebral Palsy

Cerebral palsy—also known as CP—is a condition caused by injury to the parts of the brain that control our ability to use our muscles and bodies. Children who have hemiplegic cerebral palsy have absolutely no use of one side of the body. This means their shoulder; arm, hand, leg and foot are all completely paralyzed. Amelia’s CP was caused by an infection, after her shunt for her Hydrocephalus became severely infected. She was 18 months old at the time. She then had a new shunt placed. During a routine MRI before surgery the doctors then diagnosed her with Periventricular Leukomalacia (the death of the white matter of the brain)

Cortical Visual Impairment

Cortical visual impairment (CVI) is a decreased visual response due to a neurological problem affecting the visual part of the brain. Typically, a child with CVI has a normal eye exam or has an eye condition that cannot account for the abnormal visual behavior. It is one of the most frequent causes of visual impairment in children from developed countries.

Chronic Lung Disease

Chronic lung disease (CLD) is a general term for long-term respiratory problems in premature babies. It is also known as bronchopulmonary dysplasia (BPD). CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing. The lungs of newborn (and especially premature)  babies are fragile and are easily damaged. With injury, the tissues inside the lungs become inflamed and can break down causing scarring. This scarring can result in difficulty breathing and increased oxygen needs.

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At 3.5 years old, Amelia is completely dependent on her family for everything. She is unable to sit unassisted, crawl or walk. She gets some nutrition & hydration through her g-tube & is able to eat pureed foods by mouth, but does not have the dexterity or coordination to self feed without help. Amelia receives Physical, Occupational & Speech Therapies twice weekly. She also has multiple specialists that she follows up with throughout the year. Amelia is non-verbal so her family depends on her cues for meeting her needs. She is working on a communication device at therapy & they hope to get one approved by insurance for home. When Amelia is not at therapy or at an appointment, she is doing home therapy. She has a stander, gait trainer, power wheelchair & many other pieces of adaptive equipment that are used for strengthening, weight bearing & positioning. Amelia will be starting pre-school two days a week this month!

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Amelia’s parents chose the name Amelia Faith because Amelia means “work of God” & Faith because we trust in God’s plan & wthey cannot question it. She is a daily reminder to them to believe in miracles & to never lose hope. Amelia has been through so much in such a short time, yet she still has a smile that lights up the room. She humbles them with her strength, she makes them laugh because she is so stubborn & strong-willed & she amazes them with her intelligence. Her belly laugh is so infectious & her personality draws people in! Amelia is a warrior, she never gives up & she is truly their hero.

Fierce. Strong Willed. Miraculous.

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August 19, 2018 Beautifully Different, Children 0

Beautifully Different – Christopher

Beautifully Different

A Project Celebrating Differences and Triumphs

Christopher is Beautifully Different

Meet the amazing Christopher! Christopher was born with a very rare genetic disease. He has a  XQ28 Duplication Syndrome. What exactly is a  XQ28 Duplication? Well, according to the National Organization for Rare Disorders, XQ28 duplication syndrome is a rare genetic neurodevelopmental disorder characterized by a wide variety of symptoms including low muscle tone (hypotonia), potentially severe intellectual disability, developmental delays, recurrent respiratory infections, speech abnormalities, seizures, and progressive spasticity, a condition characterized by muscle stiffness that is worsened with movement and can be associated with involuntary muscle spasms. This disease is so rare that studies came out for it in 2014! Also,  most cases of this syndrome are in the UK. Christopher is Beautifully Different!

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XQ28 Duplication Syndrome is diagnosed through genetic testing, Christopher was diagnosed when he was 2.5 years old. Christopher cannot talk and may not ever talk, though that doesn’t stop him from communicating what he needs and wants in his own way! He just started walking at age 3 with lots of help from physical therapy. Christopher looks like a typical 3 year old but cognitively he is a little behind. When Christopher was a baby, he had difficultly with eating, he would spit up all the time. He went through lots of testing for reflux, and eventually he had Nissen Fundoplication surgery and has had two extended hospital stays.

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Happy. Handsome. Tall.

Christopher is an amazing little boy! Through him being so sick in the beginning he has always been a happy and smiley boy. He has the best mannerisms and he is so incredibly cute! Christopher has an amazing support system at home who love and care for him. You can see the joy and pride on his Mom’s face when she looks at him, it’s a truly beautiful thing!

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August 13, 2018 Beautifully Different, Children 0

Beautifully Different – Landen

Beautifully Different

A Project Celebrating Differences and Triumphs

Landen is Beautifully Different

I am so excited to introduce you to Landen! Landen is an amazing 9 year old boy, who has beat leukemia TWICE… before the age of 2! He also has Epilepsy, Lennox Gastout Syndrome, hydrocephalus, severe developmental delays, sleep disorder, bowel issues, and eating issues. Despite all this, he is amazingly sweet and has such a wonderful and supportive family. Landen is Beautifully Different!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Amherst_little boy_Acute Myeloid Leukemia

The Diagnosis

It all started when Landen was about 10 months old. His parents noticed there was something wrong with his right eye. he was soon dignosed with Acute Myeloid Leukemia. Landen had a tumor laying above his right eye, he did 6 months of chemo.Unfortunately, when he was 22 months old another tumor formed in the back of his head pushing on his brain and blocking his ventricles allowing the fluid to circulate from his spine to his brain causing him to stop breathing when he would fall asleep. He did another 6 months of chemo, along with full body radiation and radiation directly to his head. He had to have a bone marrow transplant to save his life. During this time he to re-learn how to turn his head, how to sit up, hold a cup, and he had to learn how to walk again.

After he went into remission he had new battles he had to overcome. He had lost his ability to talk, it took him a year to learn to walk again, his family then found out Landen had epilepsy. Trying to find the right medications over the last 7yrs to help treat and control his seizures has been really tough on his little body has put him on hospice care twice. They just recently received a diagnosis for his seizures, Lennox Gastout Syndrome, and they’ve been told they don’t have many options left to help control his seizures.

A Day in the Life of Landen

Daily life can be exhausting with Landen as he is unable to do anything for himself or on his own. He has seizures several times a night which wake him and can cause him to potentially suffocate so the second his parents hear a noise they have to make sure he’s ok. He receives water through his g-tube when he doesn’t want to drink. When he doesn’t eat meals they have to supplement and give him formula. Landen doesn’t really have a way of communicating as a typical child would, he just got his first communication device and is still learning how to use it. In his mother’s words “We didn’t get a manual on how to handle life but somehow we’ve figured it out and everyday is a new learning experience. He needs help with everything and what most take for granted I pray for all the time.”

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Loveable. Courageous. Amazing.

Through everything this little boy has been through he always has a smile on his face. His laugh is so contagious and can brighten anyone’s day. He loves to watch sports, music and play with cars and most of all he loves the water and swimming. Landen inspires people to never give up. He may be different but he’s absolutely amazing and perfect in every way!

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August 13, 2018 Beautifully Different, Children 0

Beautifully Different – Connor

Beautifully Different

A Project Celebrating Differences and Triumphs

Connor is Beautifully Different

Meet Connor! Connor is an incredibly amazing 6 year old boy little boy who has Austism, Attention-deficit/hyperactivity disorder  (ADHD), and Pica. Despite all of the challenges that he faces in his daily life, Connor is super sweet, fun loving, and has the most amazing light brown eyes. He cooperated very well for his photo session and I even got a big hug before he left the studio with his Mom! Additionally, he was a joy to work with! Connor is Beautifully Different!

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The Diagnosis

Autism

According to Autism Speaks Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. However, we now know that there is not one autism but many types, caused by different combinations of genetic and environmental influences.

Attention Deficit Hyperactivity Disorder

The National Institute of of Mental Health defined Attention-deficit/hyperactivity disorder (ADHD) as a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development. Inattention and hyperactivity/impulsivity are the key behaviors of ADHD. Some people with ADHD only have problems with one of the behaviors, while others have both inattention and hyperactivity-impulsivity. Most children have the combined type of ADHD. Connor was diagnosed Moderate-severe Autism, nonverbal, at the age of 2 and is defying the odds every single day!

Pica

The National Eating Disorder Association defined Pica as Pica is an eating disorder that involves eating items that are not typically thought of as food and that do not contain significant nutritional value, such as hair, dirt, and paint chips. However, there are no laboratory tests for pica. Instead, the diagnosis is made from a clinical history of the patient.

Kathy Rogers Photography_Beautifully Different_Children Photographer in Amherst_little boy_autism_adhd_picaGorgeous. Sweet. Loving.

Connor is a world traveling, Cedar point loving, water baby, sweet, gorgeous, funny boy! He lights up his families life everyday with his smile, bravery, patience, progress, and love. Additionally, Connor can speak, use ASL, and a communication device. He is absolutely amazing!

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August 5, 2018 Beautifully Different, Children 0

Beautifully Different – Trey

Beautifully Different

A Project Celebrating Differences and Triumphs

Trey is Beautifully Different

Meet Trey! Trey is an amazing 3 year old little boy who is full of energy and love! This sweet boy has torticollis, left hip dysplasia, a descended Cerebellum, and was just diagnosed with a Global Developmental Delay. Trey also has sensory issues, especially when eating. One thing that immediately stood about to me about Trey, is his incredibly smile! He is like a ray of sunshine! Trey is Beautifully Different!

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The Diagnosis

Torticollis

Trey’s Mom had a completely typical pregnancy with him.  At her last pre-natal checkup her doctor said he wouldn’t be surprised if i went into labor the next day… and she did! As it turned out, Trey flipped in utero and was breech. So they had to have a emergency c section. After a few weeks Trey was diagnosed with Torticollis. (a condition in which the head becomes persistently turned to one side, often associated with painful muscle spasms.) He underwent a few weeks of physical therapy, which Trey did not respond well to. After month of screaming and Trey being uncomfortable I decided to pull him from physical therapy and looked to a neurologist for more help.

Developmental Delay & Sensory Issues

A little later his family noticed Trey was not hitting his milestones. Had a hard time sitting up, using his left side and he started walking late,his speech was also delayed. Trey does speak a little today, and is thriving with the help of sign language and imitation! Trey also has feeding issues do to sensory. Everything has to be soft and cut (nothing crunchy or of tough texture).

Hip Dysplasia

Trey has left hip dysplasia and wears ankle-foot orthosis. Trey was showing low muscle tone and had breath holding spells until he passes out. These spells of holding his breath still take place today if he feels pain, hurt, or due to any of his sensory issues. Trey does not like shower/baths. He does not like to wait or stand still or even doors closed. After a MRI it was shown that Trey’s cerebellum had a decent of 7. His family is still working with a neurologist for a repeat MRI to see what exactly going on.

At this time Trey does Physical Therapy, Occupational Therapy, and Speech Therapy to advance his skills and help him reach his maximum potential!

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Smart. Well-Mannered. Tough.

Trey is such an amazing little boy! He started Special Education Preschool through his local school system the last 6 months of last year. His Mom was terrified letting him go after him being in full time care with her but he adjusted well and loved school! He has the opportunity to attend a typical school setting where PT, OT, and ST assist him there as well. Trey did so well at his photo shoot and had TONS of energy! He cooperated well and showed off his amazing smile!

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For more information about the Beautifully Different project and how you can participate, click here. To follow me on Facebook click here!


August 4, 2018 Beautifully Different, Children 0

Beautifully Different – Molly

Beautifully Different

A Project Celebrating Differences and Triumphs

Molly is Beautifully Different

Meet the beautiful, sweet, and incredibly strong Molly! Molly was born at 29 weeks gestation. This sweet girl has Periventricular Leukomalasia and Cerebral Palsy. Periventricular Leukomalasia (PVL) is a type of brain injury that affects premature infants. The condition involves the death of small areas of brain tissue around fluid-filled areas called ventricles. The damage creates “holes” in the brain. “Leuko” refers to the brain’s white matter. “Periventricular” refers to the area around the ventricles. Cerebral Palsy is a condition marked by impaired muscle coordination (spastic paralysis) and/or other disabilities, typically caused by damage to the brain before or at birth. Molly is Beautifully Different!

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The Diagnosis

Molly had a rough go of it from the start, in addition to spending time in the NICU after she was born, she has had 5 surgeries on her eyes to correct strabismus (a misalignment of the eyes, inward or outward). Her family learned of her PVL while she was in the NICU, when they did an ultrasound on her brain and they found that she had spots on her brain. After a repeat head ultrasound she was diagnosed with PVL. At 9 months old, she was showing signs of high muscle tone and developmental delays, it was at that time that she was diagnosed with Cerebral Palsy.

A Day In The Life Of Molly

Molly requires assistance most every part of her day. She does not walk, needs support for sitting, help with dressing, toileting, playing, everything. She uses a gait trainer and a wheelchair to get around. It’s tough for her because she can’t do things like other kids can but she tries her hardest! Molly is verbal so she is able to express her thoughts, wants, and needs very effectively. She also eats on her own. Molly is quite the determined little girl, and her smile is incredibly infectious!

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Silly. Smart. Thoughtful.

Molly is amazing. Her Mom Says that Molly’s mind blows her away and she is so proud of how smart she is, how loving she is, and how she loves to have fun in life. She has come so far in the past 5 years and strives to be involved in all that she can be! Molly attends the same school as my daughter does, and long before I had the pleasure of meeting this sweet girl, I took notice of how happy she was all the time! Always a smile on her beautiful little face! Molly is such an inspiration!

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For more information about the Beautifully Different project and how you can participate, click here. To follow me on Facebook click here!