Many people have been writing to know how our appointment with the ocularist went today so I thought I would share a summary of the day’s events.
Yesterday we spoke with Maya about where we were going and who we were going to see. We encouraged her to think of any questions she might have for the ocularist that might make her feel better about the whole situation. When she woke up this morning, she explained to me that she only needed one thing: she wanted to ask the ocularist to show her an eye.
Our appointment was at 10:30 this morning and anyone who knows us well knows that we gave ourselves plenty of time to get there in order to be on time, which meant that we arrived half an hour early (it took WAY less time to get there than we anticipated and we were blessed with no traffic!) When we finally found the place, I was quickly reminded of how much I detest street parking in Montreal and why I did not own a car when I lived there. Fortunately for us, the parking angels were generous and we found a spot near the office.
When we walked into the office, we were greeted with smiles and we instantly felt at ease, as did Maya. There were puzzles in the waiting room for Maya and coffee for us. It wasn’t long and we were called into an office where we were introduced to the various people who work there, including Mr. D, the ocularist. Again, everyone was so welcoming and warm and Maya took to them immediately. Mr. D asked us if we had any questions and Maya was quick to ask to see an eye. He took out a box filled with prosthetic eyes of different shapes and colors and Maya spent quite some time looking at them and holding them in her hand. He explained to her that everyone is different and they all need different kinds of eyes. Some eyes are thick, some are thin, some have many red veins, some are blue, some are brown, etc. Maya was truly captivated by them and kept asking to see more. When Mr. D explained to her that he would be making her a special eye just for her, her face lit up and for the first time we saw excitement in her. He asked us some questions regarding Maya’s temperament and how we thought she would react to the various steps and he examined her eye to see how it is healing (it’s healing perfectly).
Then we went into another room where we were introduced to Joëlle, his apprentice, who actually began painting the iris for Maya’s prosthesis. Wow, did we ever discover a new art form today! She first looked at the iris in Maya’s good eye and examined it closely to choose the matching size. She then took out what looks like the top of a flat-headed thumbtack on a long wooden stick. She then mixed the paints with a clear liquid that allows it to dry instantly and began painting an iris. She used a very small paintbrush and painted one small line at a time. She would stop often to look at Maya’s iris and then she would paint another coat. Maya’s eye is particularly difficult to copy because she has brown, orange, green and grey in her eye. Watching Joëlle work was incredible and we were amazed by how challenging this job is. Maya was helpful and always looked at her when she asked, which facilitated her job. She was able to look closely at Maya’s iris in an attempt to match it as closely as possible. As she painted, she chit-chatted with Maya and had Maya laughing and singing to her. Maya at some point was even tickling her and tried to initiate a game of tag. Joëlle made her very difficult job look so easy. Robbie and I took it all in and enjoyed watching her create what will undoubtedly be a masterpiece made with love. Maya was also impressed by it and was excited to see the iris of her fake eye take shape.
Once that was done (it took about forty-five minutes), Mr. D showed us a video of a mold being made on a 5 year-old. Maya watched it with us and she was really impressed by how happy the little boy seemed. It was good for her to see that it doesn’t hurt and that the little boy smiled during the whole thing. It also gave Robbie and me the information we need to be able to talk to Maya about it ahead of time and to prepare her for February 9th when she will have the mold of her own eye made.
So here is what we know after today:
1-On February 9th they will make the mold of her eye.
2-On February 16th, we will be at the clinic from 9 a.m.to 5 p.m. to finish painting the prosthesis. There will be fittings, painting sessions, etc. We need to bring snacks, toys, videos and treats to keep Maya busy and focused so that they can do their work. It will be a big day, but at the end of it, Maya will have her new eye.
3-The prosthesis will need to be removed and cleaned by us every 3 months, something that I still find difficult to imagine doing, but I know we will get used to it.
4-Maya will go into the clinic every year to have the prosthesis checked. She will need new ones as she grows so that the prosthesis grows with her. Also, at the beginning, it takes up to 2 years for the eye socket to completely heal and lose all its swelling. Therefore, they often have to make a new prosthesis to ensure a better fit once the healing is complete.
5-They do everything they can to make the prosthesis look like the other eye. However, the eyelid may not fall exactly the same way as the other eye, the range of movement will not be as great as her real eye and the color may or may not match exactly at first, depending on how well Maya cooperates on the 16th. The more Maya cooperates and lets Joëlle look at her eye, the more precise the coloring will be.
We left the office feeling excited and relieved that we now have all the information we need. Maya is also more excited than she was and we believe she will go through this process just fine. Once again, our hearts filled with pride as we watched Maya woo everyone with her happiness and love.
To add to the growing list of things we have learned during this entire saga is just how many amazing people there are in our health system. Throughout this very difficult process we have encountered so many friendly, caring and giving people. Maya has received the best care and we have continuously felt as if Maya were the only patient these specialists have. For that we are truly grateful.
Sending you love and light.
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