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October 24, 2018 Beautifully Different, Children 0

Beautifully Different – Andrew

Beautifully Different

A Project Celebrating Differences and Triumphs

Andrew is Beautifully Different

Meet Andrew! Andrew is an amazing little guy, who has defied the odds! Andrew was born very premature, at 25 weeks and weighed only 15 ounces at birth. Babies born before 26 weeks weighing less that 1 pound 12 ounces are considered Micro Preemies. Micro preemies are more like to have extended NICU stays, as well as many other health related issues. Sweet Andrew has an Atrial Septal Defect (ASD), chronic lung disease, and developmental delays. He also spent 200 days in the NICU and underwent 4 surgeries. Andrew is amazing, and Andrew is Beautifully Different!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little Boy_ASD_Chronic Lung Disease_Developmental Delay

The Diagnosis

Atrial Septal Defect

Atrial Septal Defect (ASD) is a “hole” in the wall that separates the top two chambers of the heart. This defect allows oxygen-rich blood to leak into the oxygen-poor blood chambers in the heart. ASD is a defect in the septum between the heart’s two upper chambers (atria). The septum is a wall that separates the heart’s left and right sides. Andrew’s defect was discovered when he was one year old.

Chronic lung disease

Chronic lung disease (CLD) is a general term for long-term respiratory problems in premature babies. CLD results from lung injury to newborns who must use a mechanical ventilator and extra oxygen for breathing.

A Day in the Life of Andrew

For now he is your typical energetic sweet little boy! He is very much a typical kid! Andrew has to have annual follow ups with tests to help decide if/when heart surgery is necessary. He also has developmental delays from being premature. Andrew does weekly physical therapy to help him with him delays.

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little Boy_ASD_Chronic Lung Disease_Developmental Delay

Strong. Survivor. Funny.

Andrew absolutely loves to make people laugh! He is creative and loves to bake and do crafts. he has a wild streak (which is pretty typical of a boy his age) and he like to run! Most of all, he is sweet and strong. Andrew’s smile lights up every room he enters!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little Boy_ASD_Chronic Lung Disease_Developmental Delay

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


October 20, 2018 Beautifully Different, Children 0

Beautifully Different – Kylin

A Project Celebrating Differences and Triumphs

Kylin is Beautifully Different

Meet Kylin! Kylin was born with Dravet Syndrome, which is a rare, intractable, lifelong form of epilepsy. It effects 1 in every 16,000 children within their first year of life. Dravet Syndrome, also known as “Myoclonic Epilepsy of Infancy”, and has many devastating side effects. Some include sensory integration, behavioral and developmental delays, frequent and prolonged seizures, sleeping difficulties, and chronic infections. There is no current cure for Dravet Syndrome and treatment options are at a minimum. Kylin is Beautifully Different!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little boy_Dravet Syndrome

The Diagnosis

Kylin’s parents learned of Kylins difference around 8 months. He had his first seizure after his 4 month shots, and his second occurred at 6 months, unexpectedly.  Kylin has had many long hospital stays, but the his most recent hospitalization was his most extensive.

Kylin had a seizure that lasted hours, which in return resulted in him having a breathing tube and being flown to rainbows. Unfortunately, He spent 22 days in the PICU, and virtually all of that stay he was intubated. He would not wake up after all sedation medications were being stopped, his EEG was picking up seizures, and he was extremely ill. The physicians ran all tests, and checked all levels to attempt to find the source of his reoccurring fevers. Para-influenza was his positive conclusion, and that had taken a toll on him. The Para-influenza had caused Acute Encephalopathy in the Occipital Lobe of his brain. As days continued, Kylin finally awoke from his coma status. Due to the effects on his brain and his current mental state, doctors were recommending he go to a rehab facility.

His experience at the rehab center was one accompanied by an emotional roller coaster day in and day out. Kylin had an NG Tube, wasn’t talking, walking or showing any signs of his baseline. His myoclonus was getting worse, and they knew the only fix was medication increases. This was a long road of everyday therapies, 24/7 care, and lengthy drives back and forth. On January 19, 2018, Kylin went home and has made a remarkable recovery, which surpassed every expectation from his physicians! He is running, playing, talking some, and is more endearing than ever.

A Day in the Life of Kylin

Kylin has therapy Monday through Friday, four therapies twice a week. He attends school after therapy each day for two hours. He could not adjust to an all-day typical classroom, with a large amount of children. Additionally, Kylin cannot go outside on warmer to hot days, he cannot become over excited, he takes 5 medications 3 times daily, and he has a mentality of a 2 year old. Hhis life revolves around constant doctors appointments, therapies, hospitalizations and being indoors.

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little boy_Dravet Syndrome

Resilient. Heroic. Loving.

Kylin is amazing! He is a superhero!! Kylin has taught his family the true meaning of love, and how to not take things for granted. Undoubtedly, the impact he makes on them and others is truly a blessing. Above all, he has a smile that brightens the world, a hug that moves mountains, and a heart filled with the purest love!!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little boy_Dravet Syndrome

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


October 18, 2018 Beautifully Different, Children 0

Beautifully Different – Olivia

Beautifully Different

A Project Celebrating Differences and Triumphs

Olivia is Beautifully Different

Sweet beautiful Olivia is a amazing little 4 year old with Trisomy 21. The term trisomy is used to describe the presence of three chromosomes, rather than the usual matched pair of chromosomes. Olivia was born with three #21 chromosomes. Trisomy 21 is also known as Down syndrome. She also has cognitive and physical delays, as well as mild to moderate hearing loss. Olivia is Beautifully Different!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little girl_down syndrome

The Diagnosis

Something unique about Olivia, is that she is a twin! She, and her twin, were born at 34 weeks and the Neonatologist knew right away that she had physical signs of Down syndrome. He told us his suspicions right in the delivery room. Olivia spent 21 days in the hospital after birth. She had difficulty eating both because of her Downs and also her lack of endurance due to a congenital heart defect. She had a ventricular septal defect (VSD), atrial septal defect (ASD) and cleft mitral valve. Olivia came home with a nasogastric tube to assist with feeding so she could gain weight for surgery. She had open heart surgery at Nationwide Children’s Hospital to repair her heart on February 11, 2015. She was 6 months old. Olivia has had several smaller surgeries, including two sets of ear tubes, eye surgery to correct nystagmus, tonsillectomy and adenoidectomy.

A day in the Life of Olivia

Olivia attends preschool every day with her twin. They are in the same class. Olivia moves through her day with the rest of the kids. Sometimes, she gets a little distracted and sometimes she chooses not to listen as do most all children her age! She does not have many words yet,  so she works hard on effectively communicating with sign language and other physical and verbal cues that are unique to her. She participates in circle time, story time, play time, structured learning and play. So, to sum it up, her day looks much like any other 4 year old’s does!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little girl_down syndrome

Loving. Determined. Smart.

Like any other child, Olivia is one of a kind. She has a firecracker personality to match the fierceness of her red hair! Her little smile and almond eyes can brighten anyone’s day. She started walking when she was 3.5 years old. She is wildly independent, sassy, smart and resourceful. To underestimate her would be a mistake! She is capable of great things. With the help of her family, friends and amazing therapists, there is nothing this little girl won’t accomplish. Above all, Miss.Olivia is truly amazing!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little girl_down syndrome

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


October 18, 2018 Beautifully Different, Children 0

Beautifully Different – Luke

Beautifully Different

A Project Celebrating Differences and Triumphs

Luke is Beautifully Different

Let me tell you about this amazing 8 year old boy! Luke has Autism, Attention-deficit/hyperactivity disorder (ADHD), sensory processing disorder, social integration disorder, and asthma. Also, Luke is one of the most engaging and enthusiastic boys I have ever met! He wears his heart on his sleeve, and will talk your ear off! He is amazing and he is Beautifully Different!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little boy_autism_adhd

The Diagnosis

Luke was diagnosed with ADHD and sensory processing disorder at age 4, and the rest of his diagnosis’ were about a year and a half later.

Autism

According to Sutism Speaks, Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication. Autism affects 1 in 59 children.

Attention-deficit/hyperactivity disorder

Attention-deficit/hyperactivity disorder (ADHD) is a brain disorder marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development. Furthermore, according to The ADD Resource Center, 6.4 Million children between 4 and 17 have been diagnosed with ADHD.

Sensory Processing Disorder

Sensory processing (originally called “sensory integration dysfunction” or SID) refers to the way the nervous system receives messages from the senses and turns them into appropriate motor and behavioral responses. Sensory Processing Disorder (SPD), exists when sensory signals are either not detected or don’t get organized into appropriate responses.

Asthma

Asthma is a lung disease that makes it harder to move air in and out of your lungs. With asthma, the airways in your lungs are often swollen or inflamed. As a result, this makes them extra sensitive to things that you are exposed to in the environment every day, or asthma “triggers.” A trigger could be a cold or the weather, or things in the environment, such as dust, chemicals, smoke and pet dander.

A Day in the life of Luke

Luke’s day is a little different from that of a typical 4 year old boy. He has obsessions and won’t talk about anything but what he is . He has few friends that he is really close to because of poor social skills. Also, Luke goes to a special school where he takes karate as part of his curriculum! Additionally, he struggles with loud noises and doesn’t know how to react to certain situations. He doesn’t always show emotion like other kids.

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little boy_autism_adhd

Sweet. Playful. Talkative.

Luke is really a sweet and very kind little boy! He has an amazing bond with his Mom and his Dad, and they are such a great support system for him! Also, he is the type of person who see’s the positive side of life, very optimistic! Luke makes his family’s life colorful and he does that for other people as well! He can makes friends instantly with anyone! Above all,  Luke loves people, and has an amazing zest for life!

Kathy Rogers Photography_Beautifully Different_Children Photographer in Elyria_Little boy_autism_adhd

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