Fin arrived very unexpectedly, 6 weeks premature. At three weeks old, his liver and the ventricles in his brain were found to be swollen and we were told, “Your baby has a serious infection and has extensive hydrocephalus and we are extremely concerned about him.’’ They also told us, ‘’there was a high risk of him having damage to his brain’’. I will never forget those fateful words.
He was then immediately transferred to the Lurie Children’s Hospital to the Intensive care unit for over 2 months for neurosurgery treatment for Hydrocephalus and care in the PICU.
Days later, at three and a half weeks old, an MRI confirmed that he did have a severe brain injury and would have Cerebral palsy. Later he was diagnosed with Congenital Toxoplasmosis, the primary cause of all of this devastation. He would always need a VP Shunt for Hydrocephalus. He was at high risk for epilepsy and developmental delays.
At three months old, Finley finally came home to his empty nursery for the first time with his new VP shunt. His head was lumpy, misshapen, scarred and fragile from the hydrocephalus and brain surgery.
While Finley’s ten years of life has been filled with many challenges and over twenty hospital admissions at least, including the onset of Epilepsy and surgery for a permanent Gastric Feeding tube, our beautiful son teaches us so much and fills us with enduring pride.
He is learning simple life skills and developing his communicate with an Ipad. He loves school and attends an adapted soccer class. He has a wicked sense of humor and is curious, determined, loving and spirited.
Finley needs a lot of care. He cannot read or write or talk. He cannot dress or bathe himself. He wears diapers. He is legally blind. He has a feeding tube and he has epilepsy. He can walk short distances but uses a wheelchair the majority of the time.
Finley requires constant 24 hours supervision and assistance. He has to have a personal Caregiver, at home, for at least 53 hours a week in a school week to keep him clean, fed, dressed, stimulated, entertained, healthy, happy and safe.