Elise’s doctors made a request a long time ago for a video of Elise inserting her prosthesis to show other young patients who have yet to undergo enucleation. The prosthesis isn’t supposed to be removed and inserted regularly, because it will cause her lower eyelid to weaken. If it’s too weak, it won’t be able to keep her prosthesis in place, so obviously I didn’t keep removing it for her to practice. We mostly waited.
Someday last week, it fell out when she rubbed it so I asked if she’d like to try fitting it in herself. In any case, it’s a skill she needs to learn.I’m proud of her positive attitude and bright personality. I don’t think it was passed down from either of us. I promptly sent the video to her doctors and gave them the permission to show it to their patients. Mission Accomplished.
Apparently, some of them visit my blog to find out more about retinoblastoma and enucleation. Honestly speaking, it’s not profitable and I post more on IG now, but I know that many parents and patients have found encouragement through my posts on the blog so I’ll try to keep it hosted or export all the content to a free site. I’m glad that we’re at least making a positive contribution to society in this aspect.
Unlike real eyes, prosthetic eyes don’t grow, and in children who grow quickly, they need to be replaced once every few years. Elise’s first prosthetic eye was done in April 2017. We observed that the prosthetic eye kept moving out of alignment. After a consultation with Dr Ganga, he advised us to get a new one fitted.
Prosthetic eyes are handmade, and the process requires roughly three working days, including the time it takes for curing and drying. We got ours done with the same ocularist at NUH, Dr Sue.
The clinic is a small enclosed space featuring some prosthetic samples. The more complicated eye prosthetics include those made of latex to mimic the flesh surrounding the eye.
This is the imprint of Elise’s eye cavity and this is what the base of the prosthetic eye has to look like in order for it to fit snugly. I didn’t take a photo, but this was done by pouring a mixture through a mould that was fitted onto her eye cavity.
This is a brief summary and I can’t fully convey the full experience as 80% of the time involved waiting – Elise playing or on the phone watching YouTube, me mindlessly checking social media. On one particular day, I packed in a huge sticker book and other activities and my shoulder nearly gave way because I carried a tote bag.
It involves a lot of fitting and adjustment to get the angle and position right. Mainly, what we want to do is to determine the specific placement of the pupil, whether it should be right smack in the centre, or a little nearer to the nose.
Time for a #momjoke – this is Elise side-eyeing her eye. Every eye is handmade and it’s not one-size-fits-all. It’s not oval shaped, but it has a little pointed tip at the top so it holds in place.
Next, Dr Sue adds details to the eye using pigments to make it more realistic. Most of the time for Asian children, their pupils are black. Westerners have more complicated eye details and there’s a technology that can print the pupil onto the base, but it’s a film and likely isn’t as lasting.
Dr Sue mostly handles Asian patients, and paints the details by hand. This won’t be Elise’s last prosthetic eye, and we will likely have to fabricate a few more eyes before she reaches adulthood.
One thing Dr Sue advised was not to remove the prosthetic eye regularly as it affects her lower eyelid and its capability to hold the eye.
This is how she looks like now with the new eye! Due to the better fit, it doesn’t move around that much anymore. It has limited functions, like it can’t follow along when she rolls her eyes, something she does pretty often nowadays, but it’ll do!
Her prosthetic eye moves out of alignment easily nowadays, and when it’s misaligned, it can appear frightening to others. When that happens, I am tasked to realign it using a small suction cup. Knowing how uncomfortable it is, she drags her heels on it. If she flatly refuses, I have to clamp her down with my legs and use one hand to pry open her eyelids while squeezing in the suction cup while she cries murder.
Today, she decided to try doing it herself. With some verbal guidance, she caught the hang of it and not only took it out, but re-inserted and aligned her eye! No tantrums, no screaming. Mighty proud of herself for having achieved this milestone, she ran off to brag to her dad and granddad, while I shared this accomplishment with her doctor via email!