Nov 16

Life with a Child who has Type 1 Diabetes

During the month of November, parents of children diagnosed with type 1 diabetes will share testimonials with the Speak Now for Kids community. You can learn more about this chronic condition, which is usually diagnosed in children and young adults, by visiting the Juvenile Diabetes Research Foundation (JDRF).


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Samson was diagnosed with type 1 diabetes (also known as juvenile diabetes) about two weeks before his second birthday, after we had contacted his pediatrician about to his frequent urination and weight loss. Shocked and confused at first, we were blessed to have a wonderfully encouraging team ready to take care of us when we arrived at St. Joseph’s Children’s Hospital. Our endocrinologist, Dr. Grace Dougan, and our diabetes educator, Juliana Hite, gave us lots of support and listened to our questions and concerns. They reassured us repeatedly that Samson would live a healthy and active life, and he does.

Nov 14

Medicaid Matter for Kids Mondays -- Dacey

Every Monday 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 revisit Dacey, a Speak Now for Kids’ Family Advocacy Day alum and current patient at the The Children’s Hospital of San Antonio.


Dacey_Patrick.jpgWe first met Dacey nearly 18-months ago when she represented The Children's Hospital of San Antonio at the 2015 Speak Now for Kids Family Advocacy Day. Despite her medical challenges, Dacey is thriving. Her most recent surgery, which focused on her scoliosis, involved the insertion of a MAGEC (Magnetic Expansion Control) rod, allowing surgeons to straighten and correct the spine gradually and noninvasively through an external remote control system.

Nov 01

A Bedtime Routine Inspires a Way to Live

During the month of November, parents of children diagnosed with type-1 diabetes will share testimonials with the Speak Now for Kids community. You can learn more about this chronic condition, which is usually diagnosed in children and young adults, by visiting the American Diabetes Association.


Austin_Soccer.jpgAs a parent of any child, you learn that the key to getting your kiddos to bed on time is to develop a bedtime routine. With my daughter it was hot baths, a bedtime story and squeeze hugs. For Austin, it was a secret handshake between a son and his parents consisting of a hug, a kiss and a high five. As a parent, it’s hard to look back and see the missed symptoms leading to that day. At the time we thought we were in a normal battle with a 3 year who was refusing to eat food and only drink his calories. After about 4 days of constant requests for fluids and bed-wetting I told my husband I was taking him to the doctor. He asked what I suspected what was wrong and off the cuff I said “Austin either has a UTI or worst case scenario he was diabetic.” Throwing it out almost to say leave me and motherly instinct alone. Normal protocol for his symptoms included a urinalysis and strep test but I asked for them to test Austin’s blood sugar. Puzzled, but agreeable, the nurse grabbed a meter, pricked his finger, and gasped as the meter read HIGH. The reading HIGH was an indicator on the meter that Austin’s blood tested over its maximum reading of 600.

That day was March 9, 2016, and Austin was officially diagnosed with Type 1 diabetes.

Oct 31

Medicaid Matters for Kids Mondays -- Cailinn

cailinn_lynch_2015_brightened.jpgIn 2015, Kelly and Brian Lynch and their daughter Cailinn, 8, represented Children’s Hospital of Wisconsin in Washington, D.C., at meetings with federal lawmakers as part of Speak Now for Kids Family Advocacy Day.

Today, Cailinn is doing great. She is very excited to be back in school for second grade and enjoys the social interaction with the staff and her peers at Hales Corners Elementary. Cailinn spent this past summer diligently working in applied behavior analysis therapy to improve skills like feeding herself. It was hard work, but she was a rock star and continues to improve her self-feeding skills every day. As a result she was able to have her feeding tube removed, which she has had since she was 2 months old. For the first time since the day she was born, Cailinn is completely “accessory-free.” No more feeding tube, tracheostomy tube, oxygen or mediport. 

Oct 24

Medicaid Matters for Kids Mondays: Trevor

Trevor_Baseball_(3).jpgEvery Monday 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 revisit Trevor who represented Levine Children’s Hospital at the 2015 Speak Now for Kids' Family Advocacy Day.


Trevor is a typical high school sophomore. He loves all sports and plays baseball. He volunteers in his community, likes reading, video games and hanging out with his dog, Howie.

Oct 19

What's Up Wednesday -- Maggie

#WhatsUpWednesday is our chance to hear from the teens who are involved with the Speak Now for Kids community. This week’s post will focus on Maggie, a 12-year old patient at Mt. Washington Pediatric Hospital (MWPH) in Baltimore, MD. Maggie became a patient at MWPH last year after she suffered a concussion while playing soccer.

So, Maggie…what’s up?

Oct 12

What's Up Wednesday -- Shira

#WhatsUpWednesday is our chance to hear from teens who are involved with the Speak Now for Kids community. This week’s post focuses on Shira, a 17-year old with complex medical conditions who just happens to also be an award-winning activist and writer. A patient at University of Virginia Children’s Hospital, Shira founded Sick Chicks, an international community that works to empower and unite women with disabilities and illnesses.

So, Shira… what’s up?

Oct 01

The Time is Now to #StopBullying

According to the National Center for Educational Statistics, one out of every four students reports being bullied during the school year. Out of that quarter, though, only 36 percent actually report their ordeal to an adult. While bullying incidents may seem brief or like “kids being kids”, students who are bullied are much more likely to experience mental health issues than their peers. To help combat this serious problem, children’s hospitals and other partner organizations are providing a myriad of resources for parents, teachers and teens.

This month Speak Now for Kids will be highlighting the efforts of children’s hospitals throughout the country to help stop bullying and ensure that kids have a safe place to learn and grow. If you’re not already, make sure to follow us on Facebook and Twitter to learn about programs and techniques available to the public.

Sep 29

No Way is She Letting Sickle Cell Slow Her Down

To help Speak Now for Kids recognize Sickle Cell Awareness Month, we have Dayton, Ohio’s own Awo.

We met Awo when she represented Dayton Children’s Hospital at the 2014 Speak Now for Kids. As a child living with a complex medical issue, Awo is one of the estimated 3 million children who could ultimately benefit from the Advancing Care for Exceptional Kids Act (ACE Kids Act).

Sep 27

My Real Life Journey as a Pediatric Cancer Survivor’s Mom - Pt. 2

We met eight-year old Paxton at the 2016 Speak Now for kids Family Advocacy Day. Just three years ago, he was diagnosed with stage 4 Burkitt’s lymphoma leukemia at the age of 5. Now cancer-free, Paxton has continued to thrive in all things basketball (he’s a fan of Ohio’s own LeBron James). As we come to the end of Pediatric Cancer Awareness Month, Paxton’s mother, Jamie, shares the journey her family has taken to make sure Paxton received the all-around health care – both physical and mental, needed to successfully fight this diagnosis.

Today, Jamie shares how important it is to be an advocate for your child’s health care on both the local and national level. 


Paxton2.JPGSeptember 9, 2014, Paxton finished treatment and the waiting game began. Now we wait to see if he is one of the 70% of survivors that get a secondary cancer or life-threatening side effect. In his case, he will most likely get Acute Myeloid Leukemia from toxicity from the etoposide and cyclophosphamide. Or heart failure. Or other major organ failure….maybe his kidneys from being overworked processing the toxic chemicals.

I wonder if I will live long enough to see if he will be able to have children of his own. I wonder if he will ever get to experience the joy of being a father and see his children’s eyes sparkle on Christmas morning. I wonder if I will have to tell him he can’t have children because of the cancer he had at the age of 5.

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