CVI Parents have three problems

CVI Parents have three problems
CVI Parents have three problems, photo by Patricia Harrington Simanek

My son was diagnosed with cortical visual impairment (CVI) as a newborn in 2011, before he came home from the children’s hospital neonatal intensive care unit. Like many kids who have CVI, he had a stroke. Or more specifically, hypoxic ischemic encephalopathy, HIE. His birth experience meant absorbing the diagnoses of infant stroke and CVI, as well as the unknown that goes along with that, because CVI is not a stand alone diagnosis. The doctors, neurologists, called it cortical blindness. This was a day or two after hearing the heart breaking words infant stroke for the first time, a phrase that is not comprehensible in the moment. Cortical blindness, the neurologist said. Because his impairment involves the brain, and not the eye itself, there is nothing you can do. Instead the doctor should have said, Because his visual impairment involves the brain – there is so much you can do. This should be the message to all parents whose child receives a diagnosis of CVI. Continue reading “CVI Parents have three problems”

Wonderland

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Wonderland

Preparing for our trip to Pittsburgh was more emotional than anticipated. Not the routine gathering and packing of things, but sifting through medical reports to provide background on my son’s experience coming into this world. Early on I assembled a binder divided into sections – hospitals, early intervention clinics, along with a dozen others – for collecting the medical and therapy reports that would accumulate in time. Jasper is nearly two years old. His baby book remains incomplete, lines left blank for milestones he did not reach on time, empty squares where photos should be. Instead the priority is managing this medical book, rearranging, expanding, updating. Consulting the book is emotional. Gathering those early reports is particularly difficult. Remembering, reliving. Reading about my newborn son in cold medical jargon is a harsh reminder of how difficult our beginning was.

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Return to Wonderland

Originally published November 12, 2013

Pittsburgh Zoo

In the weeks leading up to our October appointment with Christine Roman-Lantzy, I debated going. Jasper’s developmental Renaissance, which began in early summer, was still going. Global improvements in communication, speech, feeding, auditory processing, and vision. Another new mom once said to me, “My baby changes so much every day, he’s constantly learning something new!” At the time, Jasper was about a year old, and doing Ok, but the words struck me. Changes so much… every day?? I had no idea what that meant. My experience was different from that of other new moms. Continue reading “Return to Wonderland”