Hi friends! It’s been a while since we talked about Olivia’s eye. It’s crazy to think that she was diagnosed almost 2 years ago (what!?) with Persistent Fetal Vasculature! When we received that diagnosis, here is what we were told:
- Olivia is blind in her right eye
- She can only see some light in her right eye – if anything
- Because of her diagnosis, this is unlikely to change
- BUT in an effort to gain some vision, she needs to patch daily for at least 4 hours a day
I remember feeling so defeated thinking she was unable to use her Nemo eye! But we came to terms with our new normal and continued on. Olivia is a rock star but I will be honest, we have NEVER hit 4 hours of patching in one day. I really don’t know how some parents do it. I have tried everything to get her to stay focused and tolerate the patch but so far, our best patch time is 3 hours a day – and I’ll take that! (and so much respect to those parents that can get their child to patch for half their waking hours – that’s the goal!) With the patch on, Olivia has always been able to maneuver her way around so we had some suspicions that maybe blind in her Nemo might have been a stretch…
Oh man, I’ve lost my point here! Back to our eye update 🙂 So after that catch up, you know we went into this appointment with these 4 ‘facts’ in our minds. Our expectations are always pretty low but we hope for the best. My husband had to work so my wonderful sister – otherwise known as YaYa – stepped in to come along for this appointment.
We headed to Olivia’s eye doctor/lens specialist early in the morning. One silver lining to Olivia growing up in these offices is that everyone knows and adores her. We walk in and their first response is “oh my goodness, you’ve gotten so big”. They knew her when she was just born and they’ve watched her grow into this independent little girl. Crazy to think how far she has come.
At previous appointments – being that Olivia was so young – the only way they would measure how much vision she has is with some special instruments. But this time, we were surprised with pictures! Dr. Mcleary handed Olivia a piece of paper with black and white pictures on them. Olivia was then told to point to the picture she could see on the screen. She practiced with both eyes and then the doctor covered her dominant eye, forcing her to use her Nemo to see. To the doctors’ surprise, she could do it. Mind you, the images were big but that doesn’t really matter! The fact is, she could see that piece of cake enough to identify it on the page in front of her! Even with my suspicions, I never dreamed she would be able to see an image that far away and be able to identify it. She was able to do a few rounds on the eye test before become completely agitated and ready to go play with the stickers she earned.
The doctor recored the data and spun her chair around. The air around us got so still. Then she said,
Your daughter is not blind.
Yup, you heard that right. She is not blind. She has terrible vision. Her prescription is so high in the double digits I didn’t even know they could go that high – but she is NOT blind. I cried right then and there. I couldn’t contain my excitement.
This means, the patching worked. It means the surgery was the right choice. It means, so far, in a field filled with so many unknowns, we are doing okay.
The doctor was sure to remind me that due to her condition, there is a limit to how much vision she is likely to gain. Since her retina was detached and was never able to completely finish developing her eye, she will always have a lot of trouble. But she’s getting better. She’s a fighter (usually fighting me to take the patch off but who’s counting) and we are going to keep fighting to get as much vision back in her Nemo eye as possible!
When Olivia received this diagnosis 2 years ago, we began going into these appointment with the idea to expect the worst but hope for the best. Even though I could see her getting around a little better with the patch on, and watching the iPad – no matter how close – I wouldn’t allow myself to believe she was truly gaining vision in her eye. So beyond ecstatic to have been wrong this time.
So, in this new year, we are going to just keep patching – hoping to increase our time per day! The doctor is having us wait on her next surgery since her eye is looking good and the ultimate goal is to get her a little bit older and bigger before they go back in. We left the appointment over the moon and headed over to Dee’s One Smart Cookie to get our brave girl an allergen-free cake pop.
Thanks for reading and stay tuned for more fun ways to get this girl to keep her patch on!!
One thought on “Eye Update!”
My 14-month old son has also right eye PFV, without a surgery. It is very nice to hear that your daughter is gaining a useful vision! Wishing you all the best. Good luck with your journey.