May 06

Meet Abel: 2019 Family Advocacy Day Champion

Abel is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Abel will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

At age 2, Abel has given life more meaning than most people get to experience—he’s a fighter. Abel was diagnosed with congenital diaphragmatic hernia and a rare genetic disorder called Corenilia de Lange syndrome. He was critically ill for the first six months of his life—his parents wondered if he could ever come home.

Through multiple surgeries, countless interventions and life-saving moments from over 10 specialists, he fought with every ounce of his being!  Abel is known as the “medical miracle who moves mountains” because he finally graduated from the Medical Surgery Intensive Care Unit (MSICU) after 323 days at Boston Children’s Hospital.

Without the methodical and innovative approach of his care team, Abel’s odds of survival would be very slim. Dr. Terry Buchmiller was Abel’s primary surgeon and her operating hands are priceless to Abel and his family. Abel was less than a week old when Dr. Buchmiller first saved his life, and she continues to save his life over and over again.

May 01

FAD Alum Newsletter -- Advocacy Continues

Charlie is a 3-year-old little boy filled with endless amounts of energy, laughter and silly comments. Under his sweet smile, he holds a long list of diagnoses and requires eight specialists for his conditions.

At two months old, Charlie was diagnosed with two congenital heart conditions—mitral stenosis and mitral regurgitation—and pulmonary hypertension, a type of high blood pressure that affects the arteries to the lungs and the right side of the heart. Within four months, Charlie had three unscheduled open-heart surgeries at Children’s Minnesota to repair, replace and fix his mitral valve. The surgeries he received at Children’s Minnesota saved his life.

Apr 22

Jacob's Story: Month of the Military Child

In honor of Month of the Military Child, we spoke with Jacob’s mom, Holly. Jacob has complex medical conditions, and getting him the care he needs can sometimes be difficult for this military family.   

 

As I shared with the Speak Now for Kids community last year, my youngest child, Jacob, began having ‘infantile spasms’, a rare seizure condition, that presented as full-body ‘jack knife’ motions five years ago. Our journey into the world of complex medical care began that day, and it has never been an easy one. Jacob has severe brain damage, cannot walk without assistance, uses a wheelchair, has complex communication needs—and the list goes on.  

 

Last year, I talked about how we got a diagnosis for Jacob, described some of the unique problems that can face military families like ours, and gave some tips I hoped were helpful for other families out there. This year, as I sit down to write, I want to illustrate one of these unique issues in more detail. It’s a topic we’ve been spending a lot of time on lately—securing the equipment Jacob needs just to live comfortably and safely in our home.  

Apr 01

Medicaid Matter for Kids Monday - Vika

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 Vika’s mom, Ashlee.

Vika was born with TAR Syndrome and faces challenges every day enduring life with a chronic condition. We adopted Vika from the Republic of Georgia almost a year ago and we’re excited for the care that she can receive in the United States; she’s currently under great care at Penn State Hershey Children’s Hospital. She relies on multiple specialists, including hematologists, orthodontists and endocrinologists.

I was nervous to apply for Medicaid after we adopted Vika. I felt like I was cheating the system because we agreed that we could afford Vika’s care when we signed her adoption paperwork. Fortunately, I had a job that had medical insurance benefits, but they did not cover all her expenses. Medicaid has been very beneficial to Vika. Even with private insurance, her care wasn’t completely covered—we have paid thousands of dollars. For instance, children with TAR syndrome can have congenital heart problems so it was recommended that she have a “simple” echocardiogram to check. After primary insurance, we still owed over $1,000 just for this one test.

Mar 30

Happy Doctor's Day!

We’re especially grateful for the brilliant and selfless doctors working every day at the children’s hospitals across the nation. In recognition of Doctor’s Day, our Speak Now for Kids families shared their thank-you messages to their talented doctors.

Mar 29

Meet Laura: Certified Child Life Specialist

Speak Now for Kids honors child life professionals who are dedicated to helping children with difficult health circumstances. The following testimonial is courtesy of the Association of Child Life Professionals (ACLP).

Laura Mitchell, BS, CCLS, is a child life specialist at Nemours A.I. duPont Hospital for Children in Wilmington, Delaware. Laura works with a multidisciplinary health care team to facilitate procedures requiring sedation and increase coping and patient and family satisfaction. She also aims to decrease stress, anxiety, pain and other negative feelings or effects related to the hospital experience.

Laura believes that facilitating coping skills should be an integral part of all procedures, not just those requiring sedation. She and her team incorporate a structured, individualized approach to sedation and use both pharmacological and non-pharmacological methods to ensure that procedures are completed safely with minimal pain and anxiety. Some patients may only require pre-procedural preparation before induction while others may benefit from education, play and procedural support.

Mar 28

Happy 2nd Birthday, Elijah!

We learned our son, Elijah, was diagnosed with Trisomy 18 (T18) prenatally. Our doctor explained "what it all means," then handed several sheets of printed paperwork on T18. Every doctor said the same thing, "there's very little, if any, life expectancy for T18 babies." They even discouraged us from learning about the condition ourselves. And with no knowledge of T18, we went to Google and the search results were horrific. We felt hopeless, frustrated and angry.

Elijah was born on March 28, 2017 with full T18, a genetic condition where he has an extra chromosome in every cell of the body. We were told to enjoy our limited time with Elijah as he would probably die soon. We did not receive routine newborn care; instead, we met the bereavement team, palliative doctors and hospice staff. There are many challenges to care for Elijah, mainly because questions regarding his care have limited answers. We still experience challenges caring for Elijah now, but we are not afraid to seek answers. We're not afraid to find a physician who knows. We're not afraid to walk away from a physician who doesn't know.

Mar 23

Meet Jessie: Certified Child Life Specialist

Speak Now for Kids honors child life professionals who are dedicated to helping children with difficult health circumstances. The following testimonial is courtesy of the Association of Child Life Professionals (ACLP).

Jessie Gordon, M.Ed., CCLS, CIMI, is the child life specialist for the PICU at Norton Children’s Hospital in Louisville, Kentucky. Her unit consists of 26 intensive care beds, some of which are dedicated to cardiac patients, and she also follows pediatric advanced heart failure and transplant patients throughout their stay.

Jessie coordinates the SibStars programming for siblings of chronic patients, many of whom are intubated, on a ventilator or sedated. She helps children understand a sibling’s diagnosis and encourages interaction and bonding. Always considering the sibling’s developmental stage and comfort level, Jessie helps them make meaning of the process, affirms their feelings, and helps them feel included and useful—often with simple gestures such as decorating the room or choosing a special blanket. A successful outcome might be a sibling climbing up in bed next to a brother or sister after weeks of being unwilling to enter the room.

Mar 22

Colin Learns Miller Children’s & Women’s is Fluent in “Kid”

When Krista McHale was driving, she could tell when her 4-year-old son, Colin, was sleeping. The sound of snoring coming from the back seat always gave it away. Colin’s snoring, along with sleep apnea, was cause for concern. After a sleep study, Colin’s pediatrician recommended he have his tonsils removed.

Krista was informed that Colin’s surgery would be performed at the Surgical Center at Memorial Care Miller Children’s & Women’s Hospital Long Beach.

Krista and Colin arrived at Miller Children’s & Women’s at 6:30 a.m. on the day of surgery. The experience would take them both by surprise.

“I was expecting, it being a children's hospital, a certain amount of kid-friendliness during the whole process,” says Krista. “However, my expectations were far exceeded from the moment we arrived.”

After the check-in process, Krista and Colin headed to the pre-operative playroom, where they would meet their surgical team.

Mar 21

Meet Stephanie: Certified Child Life Specialist

Speak Now for Kids honors child life professionals who are dedicated to helping children with difficult health circumstances. The following testimonial is courtesy of Hoops Family Children’s Hospital (HFCH) in Huntington, West Virginia.

Tenley Johnson lay quietly in her bed in the Pediatric Intensive Care Unit at the Hoops Family Children’s Hospital (HFCH) at Cabell Huntington Hospital. The room is filled with balloons and stuffed animals that would put a smile on any child’s face. But today, what made Tinley light up wasn’t a toy or video game— it was a visit from Stephanie Cape, certified child life specialist at HFCH.

“I love Stephanie to come into my room and play with me,” said the 4-year-old with a bright smile. Diagnosed with Spinal Muscular Atrophy Type 1, Tenley makes frequent visits to the hospital. On this day, she was fighting off a virus.

“If I can help bring calm, make the machines fade away and help make a child feel comfortable in a not-so-comfortable environment, then I’m doing my job,” said Cape.

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