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

Rio’s Story pt. 3



This is not  . Or doctored. This is Rio, 2 hours into wearing his new “diggs”. He recieved his Scaleral Shell aka. (Prosthetic Eye) today. I am still trying to figure out how I feel about seeing my son like this. I need a little time to process it.

He’s gorgeous. As he was before. And here we are again, having to adopt a “New Normal”. That this is how Rio is going to look from now on.

It all seems a bit surreal right now.

READ My New Normal part 1, HERE and part 2, HERE




July 9, 2009 - 9:45 pm

Nicole Goenner - Freedom, this is the first time I have seen the little guy. He is gorgeous. It is a perfect match. He is a doll baby.

July 10, 2009 - 12:54 am

Ang - I rushed back from my exciting evening to check these images out. Such a beautiful boy BEFORE this, and just as beautiful NOW. What a wonderful fit 🙂

July 10, 2009 - 6:55 am

Leah Goodman - wow! That’s amazing. I can’t wait ’til my Ephraim gets his first painted shell!

July 10, 2009 - 6:56 am

Katie - Look at him, how exciting!!!! I can’t believe how good it looks, I can’t wipe the smile off of my face:o)

July 10, 2009 - 7:11 am

Nancy Long - I am amazed! That is incredible how much it looks like the other eye. Thanks for sharing.

July 10, 2009 - 7:12 am

courtney - WOW! that is really all i can say. i know “technology” has come a long way but that is unreal! Talented people/painting. i just keep going back up to the 1st picture and staring. how does he seem to be adjusting to something different in his eye?

July 10, 2009 - 8:04 am

Freedom - It doesn’t feel different to him. It is the same exact shape and size of the clear conformers he’s been wearing all along. 🙂
I keep staring, too. I have to get used to his new look! He looks so different to me now.

July 10, 2009 - 9:24 am

Rachel Inbar - I’m Leah’s sister – she sent me over to see the new pictures of Rio and I seriously had no idea what eye had the shell… What everyone said is true. He IS gorgeous 🙂

July 10, 2009 - 1:34 pm

Jennifer Neisz - He looks awesome! Amazing eye color match too.

July 10, 2009 - 5:55 pm

kasia - Wow!! He looks great 🙂 The color matches perfectly..What a cutie pie…

July 11, 2009 - 6:59 pm

Leah Goodman - I don’t know how people are where you live, but in Israel, everyone’s always asking me if Ephraim has an eye infection or what happened to his eye.
I’m sure no one would think to ask what happened to Rio’s eye now!

July 11, 2009 - 7:40 pm

Michelle - I am totally amazed, too! He is already a beautiful spirit and sweet boy but this is like icing on the cake. :o) Love ya’ll.

July 12, 2009 - 1:01 am

Debbie - With or without his shell, he is such a cutie pie. Thanks for sharing!

July 12, 2009 - 6:58 pm

summer finney - freedom, you have the most gorgeous kids! i pray the adjusting is going well for you all! i hope we can make our way back down there soon! i really hope to hear from you soon!!

July 13, 2009 - 4:14 am

miranda - he is absolutely beautiful.
he always was……i miss you guys.
by the way, we are moving to gainsville in september. i hope to see you guys before that…

July 13, 2009 - 2:39 pm

Laura - Wow, he looks so different! It’s amazing how realistic it is.

July 22, 2009 - 10:10 pm

Holly - I am so thankful that I have found your blog! My husband and I are getting ready to travel to China in the fall to bring home our 18 month old daughter who has anophthalmia. I have scoured the internet with hardly any luck in finding REAL stories and pictures of kids with these conditions. Yours is wonderful–informative and encouraging. Thank you! Your son is beautiful!!

September 2, 2009 - 8:28 pm

Jennifer - It is neat to see what you have done on this site. I ran across it just looking up phpv again. It’s been a while since I have done any research online for it. My daughter, Jenna is 4 and has phpv in her right eye. She has a cataract, her retina is scarred and her eye is a “small eye” so she has a shell or we call it “shelly.” She got fitted for a new painted one right before we left for vacation this past summer and ever since then we have stepped a million steps backwards. She complains that it bothers her and she even complains that her old one bothers her (which is silly because she wore it all of the time). We did put it in and take it out daily so I know that is different than what you do, but it is odd that she says she can’t wear it. Now she is at that age too where she is getting real smart and I wonder if she is “playing” me. She knows that I will remove it if she complains because I don’t want to cause her any pain. At any rate, she has her annual eye appt. tomorrow and I have an ocularist appt. for next Tuesday. This way the doctor can rule out anything major going on in her eye before we get persistent with “shelly.” 🙂 Anyway….I just wanted to say your site is nice-wish I saw something like that before I went through it. Think it is tougher on the parents than the kids.

October 19, 2009 - 9:25 pm

Bobbi - Hello! I visit your site frequently. It gives me hope that we will figure all of this out for our son. He was born with a microphthalmic right eye and coloboma in the left. We have had a rough time with the ocularist part of this process and wondered if you could shed some light. We were mostly wondering if Rio had a molding done when the shells began. Our ocularist seems to be using a trial and error approach with our baby and the shells have caused him so much pain. Any advice that you could offer would be so helpful. Your little guy is beautiful. I hope that we can find someone to help our Gavin as well.

August 16, 2010 - 9:55 pm

Heather - Hi- Rio is gorgeous, shell or not. No kidding. I wonder how my son will look when his time comes. I am enjoying his immense cuteness right now. (You don’t need eyes to be cute.) Thank you so much for sharing! :::Heather

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