Our New Normal [s] » Our little family's realization, that there is no normal

My New Normal, chapter 2



This Month at our Ocularist appointment, we arrived with Rio’s shell out. He had quite a cold in the days leading up to his appt. which caused his eye to be extremely irritated and runny. He was digging at it all day long, so I finally just took it out. It cleared up after a couple of days, and then I just left it out since we were going in for the appointment, anyway.

Hanging out in the waiting room

Hanging out in the waiting room

It is so interesting how people have different responses to their condition. I really had no idea that other people would be so protective, or unsettled, or weird about it. I had my camera again this month, and I could tell people were just “to themselves”. Last month, I asked a mom with a gorgeous son about 4 or 5 years old if I could photograph him for the documentary, and she said yes at first, but I could tell she was uncomfortable. A little while later, she came back to me and asked me not to use them because she wanted to protect her son. I felt bad, and said ok- but it occured to me that some people are still not at peace with their child’s condition. It is so very sad. I would love to do a photo shoot highlighting these beautiful children, so as to raise awareness. If anyone out there is interested, please contact me.

Anyway- back to the story:


Rio is teething like crazy right now, so slobber abounds! He also is trying to walk already, he slipped and bumped his nose, thus the little boo-boo. Here we are waiting for Scott to come in the room and we have some time for some snuggles…


Rio also has a minor cleft in his lip- which you can see here. We will be having surgery on that later next year.

picture-193Scott comes in, and Rio give him a look-see. “Hey, I know him…”

picture-202Scott wants to put his old conformer in since it has been a few days since he has had it in. He thinks that if we put in the next size up, it will be too large- as the eye socket can shrink back in a very short time- he doesn’t want him to be uncomfortable.

picture-216picture-223See my toofer’s? This looks much worse than it is…

picture-234Adjusting it…

So, after he put it in, he checked it for sizing. After that, we took it out again so that Scott could measure him for his actual prosthetic piece which he will receive next month. Check Back for those pics… AND a video blog coming soon…

June 12, 2009 - 11:59 am

Sarah - He’s such a strong little boy! I love the picture of you nibbling his ear. Noah gets so bugged when I do that to him, but his ears are so squishy I just have to!

June 12, 2009 - 7:59 pm

jenna - What an amazing little guy, what a blessed family. Your blogs and stories are always so inspiring, everyone who knows you is lucky to call you friend.

June 12, 2009 - 9:21 pm

Jennifer - Rio is so sweet, I love to watch him grow up in pictures. You are welcome to take pictures of my baby boy at Scott’s office anytime.

June 13, 2009 - 7:51 am

julie - oh Rio is so cute! we’re going through those ocularist sessions too…mr. pataky always manages to pop the scleral shell in and out in milli-seconds! i wish we were that good. alas, with us, it takes half an hour with lots of tears.

you could take photos of our ocularist visits, but i suspect you don’t live in texas…

June 13, 2009 - 10:26 am

Martha - I was pointed to this entry from the Micro group on Yahoo! Boy, what memories this brings back! My now 7 year old son has a micro right eye as well as a small midline cleft lip that has now been repaired. I totally remember trying to photoshop baby pictures to try to figure out how he would look when his shell was finished. I worried so much about if he would grow and develop like his peers. So far, at 7 years in, it’s all good, and I hope it will be the same for you!

July 9, 2009 - 10:22 pm

My New Normal: part 3, SURREAL, Rio’s Prosthetic Shell » And Baby Makes Four - […] READ My New Normal part 1, HERE and part 2, HERE […]

October 8, 2009 - 12:25 pm

Mel - I just found your “part 3″…I only saw “part 1” earlier…Rio looks just great. Would love to add to your picture gallery idea…it will help so many others in the future. Look forward to hearing from you.


October 31, 2010 - 2:02 am

faitoria - hi there, Rio looks like my son who is 5 month old now, but his microphthalmia (right eye) is major meaning his little eye is deep inside.
He’s going for his 1st procedure end of next month.
I wish to share his photos with u soon!

January 21, 2011 - 7:47 pm

Chandra - Thank you so much for sharing your family’s experience with the world. I have a 4month old daughter with bilateral micro. She had her first appointment with an Ocularist today. When I was told she would need a conformer, I panicked and was so glad when I found your blog. Now when family members worry about her appearance as she gets older, I send them to your blog and say “She’ll be fine, look how cute Rio is!” I can’t wait for pictures of him with his painted shell 🙂

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