Retina Update!

Today, we took our 7th trip to Great Neck, New York with our little warrior! Olivia HATES the car – I know, what baby hates the car?! – but we take the three hour drive every three months because our retina surgeon is the best doctor we have ever met. He alone is worth the screaming baby, Moana soundtrack on repeat and endless amounts of gas. When we first went to this office back in January of this year, we were crushed. This was the place where we found out our little, beautiful girl would need to go under anesthesia. We were told that Olivia’s retina had detached – yes its as scary as it sounds! Like many others with Olivia’s condition, children with PFV run at a very high risk for retinal detachment due to the ‘stalk’ that was not severed in utero. He looked at our tear soaked, terrified faces and explained that he would put Olivia under, go into her tiny eye and sever the stalk and reattach the retina. This was the scariest information we had been told but I am going to be really honest, our doctor was so un-phased, calm and confident, we left the appointment with a sense of confidence ourselves.

By the time surgery day came, we trusted this doctor with our most precious cargo and he did not disappoint. Not only did our doctor successfully remove the stalk and begin the process of reattaching her retina, he removed the cataract that was blocking her vision and left what he called a ‘capsule’ making Olivia a candidate to one day receive an Intra Ocular Lens (this would be a contact lens that is surgically implanted). Not only did he give us our daughter back in the condition that we left her but rather, he went above and beyond!

So needless to say, we take the three-hour drive, every three months to see the man that saved our daughter’s eye. We wait in the waiting room for the chance to see our favorite doctor for five minutes – just enough time for him to check out Olivia’s little nemo eye and give us the latest on how its doing. And the most amazing thing about these appointments is Olivia’s demeanor with this doctor. With others, Olivia is a bit fussy – who wouldn’t be with a bright light shining in their eye? – She gets irritated snuggles into my arms to avoid the doctor poking at her eye. With this doctor, Olivia sits on my lap, still and silent, looking into the eyes of this amazing man. She doesn’t move but rather listens to the direction of his voice and moves her gaze in the way the doctor intends. We are in and out of that room in record time because just like us, Olivia feels most comfortable with this amazing doctor.

Today we went to New York for a retina check up before Olivia’s strabismus surgery next week. Not only was Olivia cleared for her surgery, but we were informed that her retina has FULLY reattached! Her eye is healthy and pressures were in the normal range. With the year we’ve had, this good news couldn’t have come at a better time. We will still be driving up to see our favorite doctor (now every four months – yay!) but for now, we will just keep patching.

Published by Danielle

My name is Danielle. I am a new mom, speech language pathology student and love all things Disney. I have a beautiful daughter named Olivia who was born with a condition known as PFV. This blog is a way for our to share our experience and what we have learned about the world, through the perspective of our gorgeous baby girl. Always remember, just keep swimming.

One thought on “Retina Update!

  1. Danielle

    Fabulous news dear ones! Sounds like she is on track for a positive outcome. Happy Thanksgiving.


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