Nov 19

Medicaid Matters for Kids Mondays - Lizzie

Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week, we revisited 2016 Family Advocacy Day alum, Lizzie.

Lizzie is 7 years old and she loves ballet, singing and playing with her little sister and friends. Resilient and determined Lizzie lives with a number of congenital conditions, including the congenital heart defect, transposition of the great arteries, profound hearing loss and pulmonary stenosis. Lizzie had her first open heart surgery when she was only five-days-old and had cochlear implant surgery at age one.

Today, Le Bonheur Children’s Hospital’s Heart Institute takes good care of Lizzie and monitors her cardiac issues. She also sees a speech therapist regularly.

“Without Medicaid there would have been no way we ever could have afforded Lizzie’s surgeries,” states Lizzie’s father. “We still rely on Medicaid to help with Lizzie’s bi-weekly speech therapy and costly echocardiograms which she needs every six months. Medicaid is essential to Lizzie’s care and helps us provide for everything she needs to be successful.”

Nov 16

561 Days

Speak Now for Kids is observing World Prematurity Day to raise awareness for this serous health crisis. Premature birth is the leading cause of death in children under the age of five worldwide. Babies born too early may have more health issues than babies born on time, and may face long-term health problems that affect the brain, the lungs, hearing or vision.

This week, we spoke with Jax’s mom, Kari, to learn more about Jax's journey as a premature baby at Children's Hospital of Wisconsin. 

561 days. That’s how long Jax has spent at the hospital before going home. Every single day since he was born on Jan. 7, 2017 — nearly three months early. But he finally went home this past July thanks to Children’s Hospital of Wisconsin’s outstanding medical team.

Because of his extreme prematurity, Jax’s lungs weren’t developed enough to function when he was born — he was diagnosed with chronic lung disease, tracheomalacia and pulmonary hypertension. My son had six different surgeries during his 561-day stay and received care from many different specialties working together to help him grow, develop and get stronger.

Nov 12

Medicaid Matters for Kids Mondays - Lily

Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Lily’s dad, Anthony, to learn how Medicaid helps military families like his.

While the family is covered under Tricare Standard, Lily’s care is supplemented by Medicaid which covers the Tricare deductible, copays, and other medical treatment and supplies that may not be covered by Tricare.

Lily was born without health issues. As a 15 month old, however, an ear infection spiraled out of control and resulted in “presumed viral encephalitis”—inflammation of the brain—leading to seizures and brain damage.

Lily’s parents manage her care needs by coordinating visits with approximately 20 specialists spread across their home state of New Jersey and neighboring Pennsylvania and Delaware. In addition, they face specialized daily concerns for her dental needs, medical equipment, education and transportation, among countless other life details.

“I changed careers because of Lily,” Anthony says. “I started in the Navy as an air traffic controller, then I became a nurse in the Navy Nurse Corps. Her care is so complex that I felt I needed medical training to help me better understand how to ensure Lily receives the necessary services, supplies and care. ”

Lily is covered by Tricare Standard, which is military health insurance, and she also receives Medicaid to supplement those things that Tricare does not cover. While Medicaid is instrumental in helping Lily gain access to needed medical services, the program presents barriers to coordinating her care—particularly when crossing state lines.

Nov 01

The Struggle, the Journey and Lessons Learned with Type 2 Diabetes

Speak Now for Kids is celebrating Diabetes Awareness Month in November to raise awareness about diabetes risk factors and encourage people to make healthy changes. This week, we spoke with Trina about her journey with type 2 diabetes and the experience of parenting son, Avery, who also has the disease.

About 30.3 million people in the United States have diabetes — it is one of the leading causes of disability and death. Yet, one in four people with diabetes don’t know they have the disease. Diabetes can cause blindness, nerve damage, kidney disease and other health problems if not controlled. But thankfully, people with diabetes can properly manage the disease by living a healthy lifestyle. 

For many years, my blood sugar was uncontrolled at high levels. If I have high glycemic food such as pasta or rice, it would trigger my brain to have more — and the cycle begins. On the outside, I had an active social life with my friends and was often praised for being a good employee. But in private, I was a real mess. I struggled with foggy brain, depression, nerve pain, skin infections, shoulder calcifications, fatigue and panic attacks.

Oct 29

Children like Sophia would be helped by the ACE Kids Act

“Through years of hard work, determination, and the support of doctors, therapists, friends, and family, Sophia continues to gratify and amaze us with all that she can do,” says mom, Alicia.  

Diagnosed with cerebral palsy, right hemiplegia, and global developmental delay, all before the age of one, it was unknown if she would ever walk, talk or meet other developmental and cognitive milestones. 

A team of specialists ranging from neurology to hematology, physical, occupational, and speech therapists, gastroenterologists, ophthalmologists, audiologists, and physiatrists worked together to ensure the very best care for Sophia.

Today Sophia is able to eat and walk independently, and while she is still working on some speech articulation issues, she talks. . . a lot!  She continues to defy the odds. Her fine and gross motor coordination have improved and with the support of special educators.

But it has not been easy. Sophia’s potential would not have been realized without early intervention and regular access to intense pediatric therapies and ongoing specialty care via Medicaid.

Oct 26

Desmond and His Lokomat Therapy Machine

October is National Physical Therapy Month, and we invite you to read about our amazing little patients who have benefited from physical therapy services at children’s hospitals. Today’s blog is about Desmond and his Lokomat machine from Beaumont Children’s Hospital.

If you saw 3-year-old Desmond, you would never know his mom feared he might not walk again.

The day everything changed for this Michigan family seemed like any other day. Desmond cheered his cousin on at a football game. But, after the game, Desmond fell and couldn’t stand back up.

His parents found themselves in a room full of doctors at Beaumont Children’s Hospital who told them Desmond had a tumor, about the size of an olive, on his spinal cord. “I collapsed and my husband and I started crying,” his mom says.

Oct 22

Medicaid Matters for Kids Mondays - Cici

Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week, we spoke with Cici’s mom, Jenny.  

At 11 months old, Cici choked on a piece of fruit. Her mom quickly called 911. During the 11-minute ambulance ride to the hospital, Cici’s heart stopped. Within the hour, a helicopter airlifted her to Children’s Hospital Colorado where the pediatric intensive care unit managed to stabilize her.

We went from having a typical child to having a severely disabled child overnight. My daughter suffered hypoxic brain damage from the choking accident, causing her to be physically disabled. Her brain doesn’t communicate with her muscles well, and she struggles to keep her airway open enough to breathe on her own. She cannot walk or talk, and relies on a feeding and breathing tube.

Children’s Colorado allows us to access all pediatric specialists at the same place. The doctors and nurses there coordinated well for complex procedures, like the spinal fusion she had a year ago. Cici’s condition has progressed tremendously since entering treatment at Children’s Colorado. It took a few years to get her new life under control, but she is now in a stable place. She rarely goes to the doctors and only gets admitted for surgeries. We have things under control at home, and only call the experts when needed, without having to physically go to the hospital too often.

Oct 19

Down Syndrome Awareness Month

IMG_57521607771204.jpeg“Down syndrome isn't something to be scared of. People with Down syndrome want the same things as all of us… they want to be loved and accepted.” -- Jessica, mother of Dominic

Did you know that, according to the National Down Syndrome Society (NDSS), one in every 691 babies in the United States is born with Down syndrome, making it the most common genetic condition? Even though it is so common, there are still many myths surrounding this condition that affect how we interact with our own neighbors who happen to have Down syndrome.

Oct 18

Things Are Looking Up for Wyatt

Wyatt is a typical 2-year-old. He loves puzzles, Play-Doh and playing fetch with his dog. He knows his colors, numbers and alphabet and loves reading books. But, unlike most kids his age, Wyatt has a rare form of dwarfism and has had to overcome many obstacles in his young life. For National Dwarfism Awareness Month, Speak Now for Kids spoke with Jennifer, Wyatt’s mother, to learn about Wyatt and his health journey at Children’s Healthcare of Atlanta.

It wasn’t until Wyatt was 10 weeks old that doctors discovered he has significant spinal cord stenosis. His doctors were unsure if surgery was needed to prevent further damage to his spinal cord.

A temporary solution was introduced, and Wyatt was fitted with a cervical neck brace to see if any damage to his spinal cord could be reversed. Because Wyatt was so little, the specialists had a hard time finding a cervical collar small enough to fit his tiny neck. Coincidently, Wyatt’s dad worked for a surgical equipment company that specializes in spinal implants. With the help of donations from his employer, Kevin began making his own cervical braces for Wyatt at home. So far, after two years of constantly wearing the custom cervical braces, Wyatt’s spinal cord stenosis has almost completely resolved, and he is catching up and meeting many developmental milestones.

Oct 15

Medicaid Matters for Kids Mondays - Evan

Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week we spoke with Evan’s mom, Tara. Evan was diagnosed at Children’s Hospital Colorado at 18 months with Polymicrogyria (PMG) — a condition characterized by abnormal development of the brain before birth.

PMG causes many impairments, including paralysis of the facial muscles, developmental delays, cognitive issues and cerebral palsy. Additionally, up to 85 percent of PMG patients experience varying degrees of seizures. Unfortunately, there is no cure for PMG, but it is possible to minimize the impact of the disorder through therapy.

My son, Evan, has always had a very aggressive home and school therapy schedule, and this is why he’s doing as well as he is today. Before starting therapy, Evan didn’t recognize that he had a left side to his body, and he could barely sit up. He cannot speak and relies on sign language and other augmentative communication devices.

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