World Sight Day 2021: Love Your Eyes

Each year, World Sight Day is recognized on the second Thursday of October and the purpose is to raise awareness about blindness, vision impairments and a reminder of the importance of eye exams and screenings.

Today, I see it necessary to spread this awareness and encourage you to take eye health very seriously – in particular being that advocate for our children. This is something they need us for! As a parent, it is our obligation to make sure we are aware of the vision developmental milestones and are actively listening and advocating for our kids.

If you’ve been following along, our daughter was diagnosed with Optic Nerve Hypoplasia – along with esotropia, hyperopia (farsightedness) and strabismus – at the age of 5 months. She is now 5 years old and has had 2 eye alignment surgeries. I shared our diagnosis story last year and since publishing, have heard from many people sharing similar stories.

Sharing an update on how Audrey is doing!

Patching

As mentioned above, Audrey has Optic Nerve Hypoplasia in her right eye. ONH is an underdeveloped optic nerve so she has little to no vision in the affected eye. Her Ophthalmologist recommended we patch aggressively 6-8 hours a day and while I wish I could say we are doing that, it is just not possible for her. Once we reach the hour mark – she is constantly asking to remove it and by the time two hours hits you can tell she is starting to get fatigued and annoyed!

School has made this very tricky too. One of the main reasons we held Audrey back a year was in order to get some more patch time as these early years are crucial! Our patching progress has really come to a halt with school, but we are trying our best to do a couple hours after school 2 days a week and patch one day on the weekend.

Last year I mentioned we had been noticing she will look up if you hold something in front of her. We’ve mentioned this to her doctor and he thinks there is a very good chance that is where she has vision coming from. She still hasn’t been able to articulate what she can see through her affected eye. She will tell us she can see everything, but then not be able to tell us the appropriate number of fingers we were holding up. It is also fascinating that she can navigate around the house and outside without too much trouble!

After our eye appointment this week, we learned that patching days could be dwindling. We are going to continue to follow the patch schedule I mentioned above and check to see if any progress was made in 6 months.

Speaking of patching, I’ve had several people ask me what we do about avoiding skin irritation from patch removal and we’ve found that applying a thin layer of milk of magnesia on the areas that the patch will be before applying has worked wonders!

Surgery

Two Decembers ago, Audrey had eye alignment surgery to assist with patching efforts and correct her esotropia. She did very well with the surgery and we are hoping this will be the last one. One thing we notice, when she is tired, she has a harder time controlling her eye and it will tend to bug her causing her to rub it and want to close it. In order to help with this, I feel it is important to do more eye exercises. I found this site and will work with Audrey to help keep her eye muscles strong!

Glasses

Audrey’s glasses have nothing to do with “correcting” ONH. She is slightly farsighted – one of the main reasons she needs them – but another important reason is protection. Her healthy eye is SOOO important so it is CRUCIAL that we do what we can to keep it safe!

Audrey does not need to be held back from anything – in particular sports. Her depth perception could be slightly off (though I feel it is not just because having vision only in her one eye is all she’s ever known) – so that is something we will keep an eye out for. We haven’t noticed anything that would lead us to believe that! One thing she will HAVE to do is wear protective sports goggles. We cannot risk anything terrible happening to her eye that has full vision!

Love Your Eyes

We are so hopeful for Audrey and journey with ONH! Whether you found this post in search for more answers from a recent diagnosis or you’ve simply been following along, I HOPE that you make sure your infants are reaching those developmental milestones starting at 2-3 months of age –
Following a moving object with their eyes as their visual coordination improves – focusing and tracking objects, reaching for objects, recognizing faces and smiling. All are extremely important to look out for because if caught early enough, you can make sure you are doing everything you can to give your child a HOPEFUL future!

We are fortunate enough to have the Save Our Sight program here in Ohio. The purpose of the Save Our Sight Program is to ensure that children in Ohio have good vision and healthy eyes. Under that program we’ve been able to receive free eye patches through the Ohio Amblyope Registry.