In 2011, the American Academy of Pediatrics published updated guidelines regarding the medical care for children with Down syndrome. It was recommended that all children with Down syndrome should have a sleep study by age 4. Why?
Children with Down syndrome are at high risk for obstructive sleep apnea or OSA. OSA is a sleep disorder in which the upper airway periodically closes off, not allowing airflow, until …Continue reading →
Noah is the hydration specialist for his high school football team.
October is Noah’s month. Actually, every month is Noah’s month! My son, Noah, is 17, a high school junior who loves football and a Green Bay Packers fan (his favorite person on the team is the equipment manager, Red, who has great energy and inspired Noah to help whenever there is something to do).
Noah is the big brother to two sisters. He calls our dog the other “guy” in the house to keep it even. He loves music and reruns of Full House. He uses his iPad to connect with friends and family on Facebook and Skype, does handstands underwater, sings like he’s underwater even when he’s not and happens to have Down syndrome. So it’s his month …Continue reading →
Julie, Morgan, McKenna and Kenneth Perkins
When you are expecting a baby, there are so many emotions that go along with the joyous occasion. From the start, you are asked if the baby is a boy or a girl, but all you really are hoping and praying for is a healthy baby. We experienced some challenges when our oldest daughter was born seven years ago. My pregnancy was uneventful until delivery. Morgan was born weighing less than 4 pounds at full term, and our dreams shattered. We were scared for our daughter …Continue reading →
When my daughter was born, 19 years ago, she was whisked off to the Neonatal Intensive Care Unit at Children’s Hospital due to concerning respiratory and digestive symptoms. We quickly learned that she had many special health care needs that would require us to learn some new parenting skills. I was told “You’ll have to speak for your daughter as she will not be able to speak up for herself.” My response was, “I don’t want to!”
Advocating was not something that I had planned to due when I read the baby books during my pregnancy. While I learned these skills because of Emily’s special needs, any …Continue reading →
February 1 is the 10th anniversary of Children’s Hospital of Wisconsin-Fox Valley. I would like to share our experience and let others know what a tremendous impact having the hospital close to our home has meant to us.
My son, Griffin, was born in 2003 with a rare brain abnormality called Lissencephaly (Miller-Dieker syndrome). We knew of his condition while I was pregnant, and though somewhat prepared, had no idea what was to …Continue reading →
Drew is a 23-year-old boy that has a severe neuromuscular disorder inherited from his mother, Jane. Cognitively, Drew is around 5 years old. His immunity is poor, his kidneys are weak and his gastrointestinal system has basically come to a stop. He has been in a long fight and has met many challenges with the help of his family and Children’s Hospital of Wisconsin.
Often times, Drew would be in the hospital for one to two week time periods at least once a month and treated for blood infections. At each stay over 23 years, he was been welcomed as if he were a family member. Everyone knows and loves Drew!
As Drew’s sister, it means so much to me to see the …Continue reading →