Pirate Time

Our big news of the day: NO MORE PIRATE TIME! Kiran’s left eye has gotten stronger with the eye patching we have done over the last few months, so we were told we don’t need to do it anymore! I was not expecting this – at all – I assumed we would be told to continue. This is a relief! Kiran hates pirate time.

Kiran was an absolute rockstar patient today. He did way better than ever before with all of the tests and examinations they did – he even took a new acuity test, put his chin on the chin rest for a few seconds for the first time ever, and didn’t cry or squirm (much) when they did the dilating drops.

It’s almost as if he turned four and just became even more patient and good for the docs (He has always been a pretty darn good patient, but eye appts are the worst).

Dr D feels he is doing very well. It was determined the “cataract” we have been watching in his right eye is really just a bit of pigment. It isn’t blocking his vision, and this means it’s unlikely to grow (like a cataract might), so this should not need to ever be touched surgically. Always relieving!

His left pupil is really small but dilated well with drops today. Since it seems he is able to see well with it, she opted to not do eye drops at home (We have done these in the past to help open up his pupils – he likes eyes drops about as much as he likes eye patching). So thankful to not add any meds to our daily life.

All in all, his vision seems to be improving. She feels his nystagmus – that we still see from time to time but has improved a lot during his life – is neurological and has to do with gaining motor control over his eyeballs. He is improving with this too – as we know, because we can see the improvement.

All in all, it was a very good appointment with very good news. We will be back in July and will work on practicing with the chin rest concept between now and then so Dr D can get a good look at the inside of his eye with a special camera that requires some chin rest time. It will be a couple years before we do the ERG test, which will also give us some valuable vision info, because he just isn’t developmentally ready for that yet.

Today really could not have gone better. So thankful for my awesome little man. And SO thankful we are done pirating.


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