My daughter, Annalyse, has cerebral palsy, subglottic stenosis, tracheal bronchial malacia, metabolic bonedisease, ADHD and developmental delays. Annalyse and her twin brother, Seth, were born at 25 weeks. We became their foster parents when they were around 2 months old. We knew Annalyse would have challenges living a normal life, but we were ready to help her live her best life.
Annalyse’s medical challenges impact our family more than I realized. We don't travel often since we have to stay close to a facility that can treat her. It’s complicated to take Annalyse to typical places like the beach. She can’t participate in activities with a lot of coordination and endurance due to her bone disease. We try our best to plan trips that she can be a part of, but this has definitely limited the experiences in her brothers’ lives.
We currently travel between two hospitals to receive care, Walter Reed in Bethesda, Maryland, and Cincinnati Children's Hospital Medical Center in Ohio. My husband has to take leave from the military every time Annalyse needs care in Ohio. We plan to travel to Ohio more often in the next few months since the doctors are increasing the frequency of her medical procedures.
When TRICARE was our primary insurance, we encountered issues with accessing important services. Luckily, Annalyse now has both TRICARE and Medicaid.
My daughter requires a nurse by her side at school, but this wouldn’t be possible with TRICARE alone — luckily, the school district and Medicaid agreed to pay for Annalyse's nurse expenses. TRICARE also doesn't consider one of Annalyse's medical machines necessary. While doctors have attempted to use similar machines, they were not successful. Medicaid purchased this machine for Annalyse to have in our home. We are incredibly fortunate that Cincinnati Children's Hospital takes Medicaid from our home state of Virginia, as this is not common with other out-of-state facilities.
When my husband retires from the military this year, Medicaid will be the primary payer for our medical services and equipment. As tough as it is to be parents of a medically complex child, I wouldn't change it for the world.
Annalyse is an absolute joy. She’s funny and loves to play jokes on others. Since it isn’t safe for Annalyse to be in a boat with a tracheostomy, she told everyone that she’s getting a pink kayak when she has permission to have it removed. We don’t have a kayak at home, so I’m not sure where her fascination came from!
Annalyse and I joined the Little Lobbyists to educate legislators about kids with complex medical needs. I wanted politicians to see the faces of the individuals that their legislation impacts. I hope that one day soon we can come together to protect the future of every person with complex medical needs and disabilities.