Eye Update!

Our Latest Adventures, Our Patching Stories, Patching

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!!

Little Milestones

Our Latest Adventures, Our Patching Stories, Uncategorized

I remember when we were first told Olivia would need to put a patch over her dominant eye in strengthen her Nemo eye, I was horrified. So, as we all do, I took to Instagram to read about how other families deal with patching a baby/toddler and what types of accounts I could locate with some good advice. I came across one of the most popular and respected instagrams that showed an adorable little boy that was a master patcher – and his mom, of course is a saint. She had posted a video of her little patcher opening the patch all by himself to get ready for patch time and I was completely blown away! As our avid readers know, (hi moms 😉 ) when we put Olivia’s patch on in the mornings, it starts with a cute, catchy little song but almost always continues into a meltdown. I couldn’t even begin to imagine a time where Olivia would feel so comfortable with the patch and her eyes would be strong enough, to focus on such a small object, and open it on her own.

Since Olivia only has one eye with strong vision, she has very little to no depth perception. This makes some fine motor skills sometimes hard for her to grasp. So, in theory, using eyes to focus in on a small patch in front of her and having enough visual acuity and fine motor ability to peel apart the patch should be near impossible for this tiny human. But you guessed it…she took after her fellow patching friend and opened the patch all on her own!!

Now, there are both pros and cons to her new discovery. Pros: this shows that her eyes are getting stronger, her fine motor skills are improving and she isn’t afraid of the patches and what they represent! The cons: as many of you know, patches are really expensive! So we have to be super careful about leaving them around because she WILL open them, and stick them to her clothes, the iPad screen, or even the cat! She is starting to put together that every time I see her steal a patch and open it, it ends up on her eye and results in some serious patching hours – so she has slowed down a bit – our little smart cookie.

Since the surgery, our patching time has been significantly cut short so that her eye can properly heal. She has some residual swelling and redness which has required extra goopy ointment that makes her vision even more blurry. But, we are still hitting our 60 minutes a day until we get the all clear to work our way back up to 3 hours! Olivia is starting to become an active participant in everything patch time so you know what we are going to do…just keep patching :).

It Takes a Village

Our Patching Stories

I have always heard the phrase – “it takes a village” – but I never truly knew what it meant. When Olivia entered this world and we were faced with our first real challenge as parents with her PFV diagnosis, we were terrified. But I’ll tell you what softened the blow. Our village. We are beyond lucky that not only do we have a village of people behind us but rather an army. I went to that first optomology appointment with my mom by my side. She sat there strong as stone as the doctor informed me that my 2 month old daughter had a cataract in her right eye. She hugged me and squeezed me tight as I melted into a pile of mush as soon as the doctor walked out the door. And she stayed with me, playing with her granddaughter, until my husband could slip away from work and get to the office to take care of us. Countless times, my mom (Pacha) has taken the 3-hour drive to Long Island, NY with a baby that despises the car just as much as she hates napping alone. Without complaint, Pacha and Poppou purchase patches and allergy friendly snacks for our family and Grammy and Grandpa cook up allergy friendly dinners. On those nights when my husband and I need a small reprieve from the worry of food allergies and contact lenses, my sister is over in the blink of an eye to dance to Moana, eat avocados by the spoonful and make Olivia belly laugh over absolutely everything. When Olivia is having a hard time keeping that patch on, we call Olivia’s grandparents to make her smile as she talks to all their puppies and kitties and watches Poppou crash into the phone or grandpa say ‘hello’ in the way only grandpas can ☺. My brother in law makes fires outside to keep Olivia focused on the bright lights and comforted by the warmth as she plays peak-a-boo with all of us. Gigi is always ready to play BeeBo with as much energy as possible and lets Olivia talk to all the kitties on FaceTime. On those especially difficult patch days, Olivia’s Grammy comes over to play with magnets and read books to keep a smile on Olivia’s face and that patch on her nemo. My mother in law is always there on the other end of the phone to talk us through how we are feeling and to remind us that we are doing the right thing for our little girl. When we found out about all of Olivia’s allergies, my mom and mother in law were there to keep us strong and brave. Our friends and their children keep us fun and light. They remind us that everything will be okay and to stay positive.

I know that we are extremely lucky to have such a force field around us. Our family and friends are the source of light on these challenging days. We know we can count on them to stand by our side in the face of adversity. In storm seas, they are our lifeboats. Words cannot express how lucky we are to have people in our lives that love our little girl like they do. I want to encourage anyone reading this post to ask for help. Lean on the people in your life for help on those darker days. Together, we can do this. Together, we can just keep patching.