When Jeff’s daughter Emma was born, he prepared for the worst. He knew Emma had holoprosencephaly, and that babies with this brain defect typically live only a few weeks or sometimes months.
Emma beat those odds. She’s now 10. She goes to school for a few hours twice week, and a teacher comes to the house twice a week. She’s learning to communicate through pictures on a computer. She’s smart and witty and loves to be around other kids, including her two brothers, ages 15 and 13.
Jeff hopes one day to talk to Emma through the computer that captures her thoughts using infrared sensors.
That would be a big step for a little girl who’s already beaten so many odds. In her first year alone she endured 13 surgeries. She suffers from occasional seizures, takes breathing treatments four times a day, and attends regular medical appointments with numerous specialists.
“Some days my head just spins managing everything,” said Jeff, a single dad who lives with his three children.
He works 12-plus-hour days driving a dump truck and is thankful to have a job that allows him the flexibility to take off when his daughter needs him. Jeff and Emma’s mom divorced several years ago, and he is her primary caregiver. He’s the first to admit it’s not been easy, and it’s not something he could have done alone.
CICOA helps him coordinate Emma’s care, which includes a nurse four days a week. His biggest help, though, comes from Emma’s maternal grandmother, who drives her to most of her appointments and to school. She also gives Emma her breathing treatments, chest compressions, medications, feedings and more. When nurses can’t make it, she fills in for them.
“I don’t know what I’d do without her,” Jeff said.
CICOA has been there to help navigate Emma’s care. Her care manager recently recognized that bathing had become a challenge. CICOA provided a home modification to enlarge to doorway to Emma’s bedroom and to the bathroom, so she now can take regular baths again.
A lot of parents don’t realize help is out there, Jeff said. Jeff has been involved in a support group with other parents and recently saw a Facebook post from a dad of a 6-year-old. Jeff could see the dad needed help, and he connected him with CICOA.