Grayson’s Third Ophthalmology Appointment

Unfortunately, Grayson’s vision has changed. Our sweet boy went through hours of testing and ended with some tough news.

His aquity now seems to be 20/400-20/500 (previously tested at 20/200-20/300), although that can be subjective, possibly tired eyes, or a true result. And his ERG still shows some peaks in his test (meaning his brain and eyes are still talking to each other - thank goodness) but smaller than 6 months ago.

We hope that his vision plateau’s and he stays with this change. The way he has adapted is beyond me, he amazes me every single day. I still feel like he can enjoy many things still.

I held my tears in for as long as possible, until our doctor looked at me and said we are doing absolutely everything we can as parents and to never give up hope. She said her tears would come as soon as we leave.

We will keep Grayson on his medicine since vision is only one symptom of this awful disease. We need to save Grayson’s entire body.

This feels hard but as I look at his perfect little self it’s another reminder to never take our days, hours, minutes for granted. And to buy that extra toy (or two) at the store, and that’s exactly what we did tonight.

Never giving up hope, not for a second.