CVI Phase I-II Adaptations (aka what I’ve been doing for the past month)

We received our daughter’s CVI diagnosis on May 7, 2018. This piece was originally published on my personal family blog on June 7, 2018. It led me to believe that sharing our everyday CVI strategies has the potential to inform and help other CVI parents. Because it served as a catalyst in the creation of Everyday CVI, I have decided to re-publish it here as a starting point in this new space dedicated to our everyday CVI adaptations. I hope it is helpful to you in some small way!

Today marks one month since we received our daughter’s Cortical Visual Impairment (CVI) diagnosis. One entire month since we learned of our daughter’s disability – a disability of visual access. Thankfully we have a pediatric ophthalmologist that rightly informed us upon giving the diagnosis that it is a visual impairment that can be improved with proper interventions (how frustrating for so many CVI parents that they were wrongly misinformed by medical and educational professionals from the get-go and took years of fighting and researching to get to where we are now!).

Still, the basic information I was given at the eye doctor in no way revealed to me that CVI was so complex – and the intervention methods she listed were barely the tip of the iceberg of what we could be doing for our sweet Rosalie. But, because she gave me the most crucial information about CVI that so many parents are not given – the fact that we CAN do things to improve her vision (technically, how her brain understands vision since her eyes work fine) – I went home and got to work researching. In other words, I was able to immediately dive headfirst into medical research and advocacy mode for my daughter….

First, I visited the website Little Bear Sees, which helped me begin to see the magnitudinal impact CVI has (and will have) on my daughter’s everyday life – but it also helped me start to digest the message that there were several things I could truly (and inexpensively) begin implementing immediately(!) to help my daughter better “use” her vision, thus making important neural connections in her brain.

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Another CVI Blog is Born….

One year ago I gave birth to a precious little girl, Rosalie. Though she is small, she is MIGHTY. She currently says two words: “done” and “yay!” Both are incredibly telling of her joyful, feisty personality; she exudes happiness and is generally delighted by all that life has to offer, but she has always made it perfectly clear to everyone when she is just…over it. She found her voice at birth out of necessity, effectively communicating her likes, dislikes, wants, and needs – loudly – to anyone who will listen and respond accordingly. If this is a glimpse at how she will advocate for herself in life I could not be happier – because she will need to learn how to advocate for herself as she grows.

Rosalie was born with hydrocephalus, a brain condition with no cure that currently has only one treatment: brain surgery. She had her first brain surgery at two days old and has had a total of 4 brain surgeries to date. My husband and I were thrown quickly into the world of special medical needs parenting, but when Rosalie was 7 months old we were sent reeling by a new diagnosis: Cortical Visual Impairment (CVI).

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