milo’s left eye is smaller than his right eye since birth and the retina is detached (hence no vision). we were always told that at some point (roughly before the age of 5) he would need to be fitted for a prosthesis so his left side of his face will grow equally with his right side. the prosthesis is to stretch out his left eye since the face grows around the orbit of your eye.
so in his march EUA* (exam under anesthesia), his ocularist tag along to look to see if he is ready for a prosthesis and indeed he was. milo had his first fitting on april 20th and my husband and i were feeling pretty anxious. the process wasn’t as bad as we anticipated. i did have to hold his arm and head and my husband was on guard for his legs in case he kicks. milo cried. it was over pretty quickly. (imagine an evil** version of a contact fitting) we left the office after awhile and milo seems to be okay with it. that very night he went crazee and was screaming and crying for over an hour and finally went to bed without his dinner. the next day he was fine and even went to his regular swim class. after lunch he screamed and cried and only this time you could tell that he was obviously bothered by the prosthesis. in summary, we had to take it out. the ocularist gave us this tiny suction cup to use. it was hard to get milo to listen to us. we kept telling him what we need to do to make him feel better but he just wouldn’t listen because he is too bother by the discomfort. unfortunately we had to be sneaky and we had to do it when he was asleep. it was horrible of us and we were the wicked evil witches but we had no choice. after we took out the prosthesis, milo had both of his hands cupping his eyes for a long time. it was his natural human reaction to the trauma and his way of protecting his eyes while sleeping. it was heartbreaking. we really want to say frack this whole prosthesis to pieces because its not worth it. milo is SO traumatize by this and he still has his whole life of doctor visit and people looking at his eyes and how would he ever deal? the hard decision of parenting kicks in on this because if we don’t do this now it will be too late. its now or never because his face is still growing.
SO FIRST FITTING OF PROSTHESIS: F.A.I.L.E.D.
oh. a little history of the prosthesis. milo has an actual left eye so all the ocularist gave him is a clear scleral cover shell. no need for fancy painting of an actual eye on it.
on may 24th he had his routine EUA, a lower eyelid epiblepharon*** on his right eye, and second fitting of his prosthesis (the ocularist made the shell a bit thinner this time). that same day (tuesday), he was great. the second day (wednesday), he was okay with the prosthesis eye and was only upset about putting ointment on his stitches on the right eye. the third day (thursday) was bad. the night before he was crying a lot in his sleep and in the morning he refused to open his eyes and was like that until the next day (friday). on friday he was still refusing to open his eyes and finally we took him in to see the doctor because he told us that its his right eye that was hurting. the doctor checked it out and said all was well and the stitches are healing nicely and he is good to go. that night he finally opened up his eyes and that was the best feeling my husband and i had. we were SO relieved and milo was so happy. the next day (saturday) came and milo did not open his eyes again and it was not until the evening he opened them. this pattern went on and is still going on. we now know how to handle it and how to talk to him and how to get him to do it.
the thing is, throughout all of this, we talked to him the whole time about whats going on and how we know how he is feeling and how we are there to help and what can we do to help and we even told him about the shell in his eye and how it does get uncomfortable especially when waking up because it gets dry.
i will never know what he is feeling. it does break my heart to see him like this because i cant help him. all this reminded my husband and i of all of milo’s conditions and how he has to face this for the rest of his life.
milo is truly my superhero of all time. i am so proud of him. he has been so brave since day one, literally.
he is better about opening his eyes each day. our ipad is loaded up with his Pixar buddies – the TOY STORY gang and CARS to encourage him to open up his eyes. they are always there when he wakes up and before he falls asleep. they are on a as needed basis. milo likes to show people his shell and we encourage him to do so. we talk about it with him often just like how i always tell him he has two very amazingly amazing eyes, right eye is the big one and the left eye is the small one.
BUT HONESTLY: i wish someone can tell me how long it will take his eye to adjust to this giant plastic shell???!!!! its like a turtle shell on your eye.
*milo has been put under since he was born so that they could look at his eyes without having him scream his lungs out. he used to get it done every 2 weeks and now its every 3-4 months. and this is mainly with his glaucoma specialist.
** evil because the prosthesis is insanely thicker than a contact. its hard and thick like TWO Lee Press-on nail and the size of it is bigger than your eyeball.
*** fancy term of saying that they need to fix milo’s lower right lid eyelashes since they are turning in and poking his eye. he actually had it done about a year ago and its happening again. sine this is his only eye, they are extra conservative and therefore they are fixing it, otherwise it usually corrects itself.
He truly is a little superhero! This was a really informative post. Thanks for writing about it!