World Sight Day 2020: Hope In Sight

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.

To me, the best way to spread awareness is by sharing progress, our story and any helpful information we’ve discovered along the way in order to help someone who may need answers and words of encouragement to know they are not alone.

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!

When patching, it is truly fascinating how she is able to navigate around the house – it gives us hope that there is some vision in the ONH affected eye – unfortunately, we aren’t sure how much! She will tell us she is able to see things when we ask, and we think the vision is coming from the lower half of her eye because of how her eye looks up when we hold something straight out in front of her. TBD on this theory, but that’s what we notice!

We patch for 2.5 hours a day and have made adjustments to our patching schedule now that she has two full days of pre-K. This is something we struggle with and are wondering how we will navigate when she goes to school full time. 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

Last December, 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 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!

Hope In Sight

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.