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

My New Normal… a trip to the Ocularist

The Office

The Office

When my son was diagnosed with Microphthalmia, I felt my world come crashing down,  fear and grief flooded in. I was exposed. My prior feelings of invincibility forever washed away by one word I had never heard before, but would grow to know all too well.  Micro meaning little, ophthalmos meaning eye.

“Little Eye.”

What is this? What does this mean? What causes this??? Did I do this to him? So many questions. And LOADS of technical, sterile, and clinical answers boiling down to one thing: My son is blind in his right eye and it is significantly smaller than his other eye. It will not grow to the same size unless science or God change that someday.

More Questions: What will this look like? What happens next? Is he in pain? I’ve never even heard of this thing, much less know where to turn. I turn to the internet. NOT wanting to call another doctor who will just fill my head with more “maybes” and “possiblys”, and now talking “surgeries”. I couldn’t stand one more “worst-case-scenario.” I hear the song “A Day in the Life” by the Beatles… The middle of the song where all the traffic and noise come to a crescendo, and then the alarm clock goes off… “WAKE UP… This is your new reality. Your new “normal”.

What does this new normal look like? Is this going to change everything? I couldn’t get answers fast enough, as my gorgeous teensy 3 week old baby boy that I couldn’t wait to meet, was yet again having to go in for yet another needle prick, and yet another MRI to make sure his brain had fully developed. My sweet, fragile, innocent and pure baby. I searched and searched. All I found were things that scared me even more. Taking my fear and giving it to God were not an option in those days, because I couldn’t sort through my disappointment enough to even consider He didn’t cause this, yet, or He wasn’t punishing me or my husband. Although, I know that is not His nature to do that. Tell that to a woman who’s whole foundation has just been shaken! Who had spent the last 10 years serving the Lord whole-heartedly. So, I kept looking for an answer. Doctors’ dissertations, and clinical case studies, extremes. I just wanted a photo. One stinking photo that I could look at to tell me what my new normal would look like. So I could begin to wrap my head around it while we waited for weeks and weeks to get referrals and appointments. The longer I went without information, the bigger this thing became in my imagination.  “I know this isn’t about me, but if I can’t come to grips with this, HE never will!” I would pressure myself into thinking “If Gabriel and I don’t settle this in our hearts, what are we ever going to be able to tell him?” Envisioning the day when he comes home from school crying because someone was making fun of him?

One picture. That I never found.

Well, now that I have had 7 months of our new normal, I have decided to document Rio’s trips to the Ocularist so that I can paint the world the picture that I so desperately needed to see. And hopefully, someone else out there can relate and curtail half the anxiety I had, just by seeing the photos. And having someone tell you “It’s not that bad!” And the “new normal” gets more and more normal every time.

I am not an expert on this, by any means. I can only offer to you- my experience. You can’t argue my experience. It’s mine. But, I share it with you gladly.

“Hey, It’s not that bad…”

……………..

The human skull needs the growing eyeball pressing against it to stimulate the skull to grow properly and proportionally. So when someone has “little eye” or “eye-s” a scaleral shell or conformer is fitted and inserted into the little eye. Is kind of like a very thick, very hard contact lens. Now, in our case, he has very little, (if any) sight in this eye at all, so we are not trying to “save” the vision or help it develop at all, If we were, then “patching” would come into play where the good eye is patched for a certain amount of time per day forcing the child to look only out of the under-developed eye, thus causing it to “work out”. The human eye is done developing and growing by the time a child is 5 or 6 years old so the window of opportunity for this is narrow. Some people take that option, but it was not recommended for us by some of the worlds leading Opthalmologists and Retinal Specialists, so we took their advice and are just doing the ocular therapy, recommended by both Rios Opth’s, and his Cranio-Facial Docs.

He also had to see a Geneticist, and an Endocrinologist for loads of other tests as he also has a small cleft in his lip- right down the middle. They wanted to rule out all kinds of other serious conditions. Which, thank the Lord, he does not have.

So, now, with the tests run, and the results in, we go to the Ocularist once a month to switch out Rio’s conformer for a larger one that helps him to open his eyelid, and presses against the socket of the eye- stimulating that part to grow. We do not take the shell out. The Ocularist does. Rio rubbed it out once, and we found it in his crib- and washed it, and put it back in. They taught us how to do that. And that first time was really scary, and Rio screamed, and I cried because I made him cry. But he stopped after about 30 seconds.

We have only had to take it out ourselves once because we all had severe pollen reactions (him included) to the point where his eye was completely bloodshot red. It cleared after 2 days, so I put it back in.

Please enjoy the following photos and comment back and spread the word so that other people can easily find this when they do a search on Google or whatever. If you blog about this mini photo documentary, and link back to it, it raises it up in the search engines.

Thanks, and feel free to check back for updates, or look in the archives to see the whole journey as it is played out. I began this blog while I was pregnant with Rio. And continue it today.

The Chair...

The Chair...

Rio

Rio's Chart

Shell Boxes- they are like little jewelry boxes- for different types of jewels

Shell Boxes- they are like little jewelry boxes- for different types of jewels

His old shell

His old shell. If you look really close you will see little air bubbles trapped behind the shell this is normal.

Waiting with a scowl

Waiting with a scowl

The Ocularist removes the shell

The Ocularist removes the shell. That blue tool in his hand is a rubbery suction-cup type thinngy that sticks to the shell and helps slide it out.

Still taking it out

Sometimes it takes a couple of tries- especially when baby squirms

Rio with out the shell

Rio with out the shell: without the added support, his eye is very sunken in which becomes more and more noticable as he grows

No shell... I make funny faces.

No shell... I make funny faces.

the most handsomest (sorry, I can

the most handsomest (sorry, I can't help it!)

He rubs his eye alot while the shell is out

He rubs his eye alot while the shell is out- it must feel strange to him, because he is used to it being in all the time. Scott says it actually provides him with relief once it is in.

They wrap the old shell in wax and keep it for further shaping and sizing reference

They wrap the old shell in wax and keep it for further shaping and sizing reference

The shiny, new shell: little holes are drilled into it, so the eye can still get oxygen

The shiny, new shell: little holes are drilled into it, so the eye can still get oxygen

Conformer Detail: size reference

Conformer Detail: size reference, the black dot is so that you can tell if it is in. Sometimes, since it is clear, it can be hard to tell for sure. So, thus the black dot. Vivia, Rio's sister discovered the black dot one day and asked me.. "Mommy, why does Rio's eye have a black dot?" And I said, "So do yours..." She didn't believe me, so she looked in the mirror, and goes. "Oh... yah. I do!" 🙂 She never brought it up again except to say "We both have black dots, right mama?"

conformer detail: inside. note the thickness

conformer detail: inside. note the thickness

Ocularist Scott prepares the new shell for insertion

Ocularist Scott prepares the new shell for insertion

all set. Here it comes

You can see the suction tool well here

Rio knows what

Rio knows what's coming... fusses in protest

Inserting the Conformer

Inserting the Conformer

adjusting it

adjusting it

done. this takes all of 5 seconds, he fusses for about 30 more. And he

Done! This takes all of 5 seconds, he fusses for about 30 more. And he's happy again in no time!

On our next visit, Rio will be getting fitted for his prosthetic piece. Which means it is an eye with “art”. This will be the actual piece he will wear that will have a pupil and iris painted on it so that you won’t even be able to tell the difference unless you are looking for it. I will make sure and keep documenting our journey through my lens. If you want to know more, and be updated, you can “follow” my blog by subscribing to my rss feed.

Thanks for stopping by, and please don’t forget to leave a comment.

🙂

If you want to learn more, you can check out these sites I have found that actually had good information:

http://www.prostheticeye.com/

http://www.geocities.com/phpv_2000/

http://www.anophthalmia.org/index.shtml

May 12, 2009 - 10:24 pm

Ang - My dear Freedom. Your heart is incredible, you are beautiful both inside and out. Thank you so much for sharing yourself so vulnerably. I loved reading up about Mister Rio and think it is just fabulous that you are documenting this journey both in your writing and your photography.

For the record, I want to squeeze and kiss his little face! Such a beautiful boy!

Hugs! 🙂

May 12, 2009 - 11:01 pm

Dr. Rona Michelson - Thank you so very much for this. We are going through the same thing with our grandson and we are a few months behind you, so this is extremely helpful. All the best– and I will be linking to you.

May 12, 2009 - 11:20 pm

Ilene - Wow! This was very insightful..I a brand new baby girl who just turned 3months last week and she too has micro in her rigt eye and they say she is blind in that eye.I had a lot of the same emotions and concerns you did and it’s nice to ow that I am not alone and “this too shall pass” and is becoming my new normal. Thank you! and best wishes to your adrable baby boy 🙂

May 13, 2009 - 2:58 am

cara - Freedom, you are so brave and your kids will be even more so because of it. Thanks for sharing.

May 13, 2009 - 5:59 am

Jennifer Neisz - Thank you for putting this on your blog. It all looks familiar, even the little blue boxes and Scott’s hands on Rio’s face. It is comforting to know that there is someone else in the world who understands exactly what it feels like to go through this…in that chair at Scott’s office. I will send a link to your blog to my family, who will find this very helpful in understanding what we do at the ocularist’s office. Thanks again for putting yourself out there. It will help so many people with babies who have microphthalmia to know that it really will be okay!

May 13, 2009 - 6:57 am

julie - this is a wonderful photodocumentary! i, too, had a hard time finding photos and information online when we first discovered that our son (now 18 months) has microphthalmia – at least any photos or information that wasn’t completely scary!

and it’s so nice to see this post – “hey, someone else knows our “normal,” too!” that’s a good feeling. we use that same blue suction cup thingy!

i sent a link to this post to various family and friends, so they could get a glimpse into our brave new world. thanks for the great post!

May 13, 2009 - 7:27 am

Susan Bourgoin - Freedom–how beautiful…. your son’s legacy is the love he has from his family and church. What an incredible testimony of your faith. And the site and photos are excellent… Love you girl!

May 13, 2009 - 7:34 am

Jesse - Freedom, your journey is incredible and I love seeing your heart completely exposed…it is so beautiful. Your family is amazing. You are going to touch so many lives with this blog, so many lives will be given hope through you and Rio. Even though I have never experienced a situation like this, I want to thank you for what you’re doing. When I read your blogs I am consumed with a feeling of so many women being comforted…it actually makes me feel heavy, like I can’t move…so I know they are here and are enjoying the solice of being under your wings even for a moment.
Love you so much.

May 13, 2009 - 7:47 am

Jane Streff - Hello there! Yeah for you! Our experiences with Breanna’s micro eye, & shell processes are much the same. If you want a small glimps of what an older “normal” looks like (7 yrs. old). We have pictures of Breanna (in Nebraska) with her painted shell posted on the phpv picture site.
The painted shell will make a world of difference in appearance. We only have to go once a year now to get a new shell made. We go in for adjustments and buffing in between times for comfort. Thank You for thinking to take a camera in with you to document this process! I too wish that I had something like this to see when we had started our journey. I think it would have eliminated a great deal of anxiety! Thank You. Jane

May 13, 2009 - 8:42 am

Laura - Free, thanks for sharing this. I can’t imagine the difficulty you’ve been through, but I know that God is using this to reach so many others with a message of hope and love. Thanks for helping me understand your world a little better. Love you and your gorgeous, precious baby boy!!!

May 13, 2009 - 10:37 am

Sarah - Freedom, you are a strong, faithful woman of God, and He knows it!Nothing happens without Him having a good reason(as you know;). I’m sure you will help many, with the knowledge you receive, as you go through everything. I want you to know that I had a dream that Rio was healed. He was looking at me with two big brown eyes and smiling really big. I don’t know what will take place before that occures, but I will continue to have faith that someday, he will be completely healed, in Jesus’ precious name! I love you;)

May 13, 2009 - 3:10 pm

the moms of MAPS - What a great photo blog! Thank you so much for sharing. We have linked to you from our website.
We wish you and your son all the best.
The moms of MAPS: Microphthalmia Anophthalmia Parent Support

May 13, 2009 - 6:45 pm

Annie Henry - Wow!! I know exactly what you mean by all of this! My baby is now 5 and going off to kindergarten. She was born with micro in her right eye, and has a painted prosthesis. I know the process well! I’m now struggling with how to teach her to handle all of this in a classroom of kindergarteners. She is so smart and special, and I’m sure your Rio is. Feel free to visit my blog, although I did not blog in the beginning and haven’t really written anything about Alex’s micro.
Thank you for being so bold and taking this step! Feel free to write me if you have any questions or comments about anything.

May 14, 2009 - 8:13 am

Leihana - Thank you for sharing this. I wish I had seen this 18 months ago when my daughter was born with bilat micro eyes. It would have been so helpful and helped me be far more prepared for what we were in for. I hope many people will learn a great deal from what you have shared.

May 14, 2009 - 11:25 am

nayeli - It’s amazing how this new reality transform our lives, and how we can see the world now, our new perception of the beauty goes beyond the standars we had and that seems so far and shallow. Our beautiful babys gave us the opportunity to learn, grow, reevaluate our values and discover a strengt we didn’t know we have. Keep going, keep discovering and keep believing. Great work !!!

May 14, 2009 - 1:44 pm

Katie - In my limited understanding of what God is doing I am so sorry that you and your family are going through all of this. As a mom my heart aches knowing how hard this must be for you and Gabe to see your precious baby have to suffer in any way. It’s one of those things that just doen’t seem “right”. Thank you for sharing this part of your life. I really believe that one day you’ll be able to look back on this time with genuine gratitude in your heart for what I know will be a tremendous testimony of God’s amazing faithfulness, goodness, and love in Rio’s and your entire family’s lives. I love you so much, and can’t wait to hear more. Love you!!!

May 15, 2009 - 8:04 am

Conni VandeBunte - Hi Freedom,
Thank on behalf of all the new micro moms & dad for this photo documentary! I have done a lot of “explaining” to new moms through the micro yahoo group website, but there are so many things that pictures can say that are enormously helpful! I am sure many future moms will appreciate the time you took to do this! Praying God’s blessings on you, Conni

May 15, 2009 - 8:22 pm

Freedom - I am truly blown away by the response to this little expression of my heart. I check my web stats, and since i have put up this photo documentary, there were 17,000 hits and 600 and something visitors! That’s that many people who now know about this condition. And are learning about it! Thanks for all the support and well-wishes, and blessings.
I will def. Keep up the work 🙂

May 16, 2009 - 9:00 pm

Kimishoe - What a beautiful boy and blog! You put into words what I only wish I could. My almost 8 month old son has bilateral micro and we’re just now going through the conformer process and surgeries. Thanks for sharing and I look forward to reading more about Rio’s journey.

May 17, 2009 - 1:47 am

Leah Goodman - Thank you so much for this. My son has PHPV/Micro and we’re about to start this process. It’s very scary and your explanation and pictures really help!

May 17, 2009 - 5:26 am

M.Adel Mahdy - I just had a grand son Adam born last week with anophthalmia in his left eye >> your pics gave us a great hope to start doing the conformer as soon as possible ..by the way when you started the process? 1-2M. of Rio’s age or a little later ? our little Adam is very tiny kid I wonder if the socket tissue can bear inserting the conformer in >>>> in our case I think it would be sphirical shape
best of luck to you & to Rio

May 18, 2009 - 8:43 pm

saffronrose0 - Thank you so very much for this. I joined group way back in 2000 but, due to circumstances had not been back in until recently. My daughter’s name is Kiana and I am Mandy so we used to go under mandykiana. Kiana too has a micro right eye but, unfortunately for us we were driven in the direction to not have shell. Kiana turned 13 last month and now due to this her right side of face has collapsed and she now wil not only have to have a shell but, will have to have right side of face reconstructed surgically. Thank you for posting these photo’s and for writing your story. I hope this will help other parents not to be scared of the unknown and to go with the shell, that will honestly make things a lot easier in the future for their precious child. Thank you again. Mandy

May 18, 2009 - 9:43 pm

Freedom - We started when Rio was 6 weeks, or so, old. Our docs all agreed this was the best path for him. I think it is good that he get used to wearing it right away because when they get older, they have more likelihood to mess with it, if they are not used to it. It was a little difficult at first, but now we are all used to it. And it looks worse than it is. I liken it to wearing contacts. They are irritating at first, but you do get used to them after a while, and forget they are even there.

May 19, 2009 - 8:15 am

Cameron Petersen - Freedom, I haven’t spoken to you since high school. I remember you being a wonderful person with so much to offer. I see now that I was right in remembering you in this way. This is an impressive story. I have never heard of this and quite frankly not sure how I would handle it. I would hope it would be in the same manner as you.
I hope everything is going the way it should and that you are doing well.
This is a great and honest story of true love.

Be well

~C~

May 19, 2009 - 8:34 pm

Miranda - Free, You are the strongest women I have ever met. And so extremely loving. I am blessed to have met you.
You are helping so many people by telling your story.

I miss you guys, lots.
If you need anything, I am here. Just give me a call.

May 27, 2009 - 11:01 am

Laura Martinez - Hey Freedom, this is Laura, Gabriel’s cousin. We visited you guys a few years ago, before you even had any babies 🙁 (time for a new visit!!!) Well I stumbled across your page through face book and I’m so glad I did, it is wonderful to see so many pictures of my baby cousins and reading about them makes me feel like I know them at least a little, but I really hope to meet them soon. I hadn’t seen pictures of Rio in a very long time, I might have seen one or two since he was a new born but none recently. I was aware of his Microphthalmia and wondered a bit how he would look, though I knew he’d be handsome because his parents both missed their calling to be models 😉 but I couldn’t have imagined this handsome!! he is gorgeous and so is Vivia. Send everybody hugs and kisses. I love you guys

July 9, 2009 - 10:22 pm

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

September 5, 2009 - 9:26 am

Shannon Kerns - Freedom thank you so much for sharing this with me! My son Dominic just got his first shell put in a few days ago. He is only 7 weeks old and I am still trying to get used to the fact that he is blind in his right eye. From reading your blog and the websites I do know that this will be my “New Normal”. He is doing great with his first shell … he has shown no signs that it is even bothering him! I know we all face a long hard road ahead with all the appointments and questions and comments from other people. Thank you again for sharing I really appreciate it. The more I read about Microphthalmia and see how well other children are doing with the same condition it makes me feel very hopeful that my little guy will do great! God bless you and your family!

September 15, 2009 - 8:42 pm

Souk - Thank you for sharing your story. I have a newborn baby boy who was born with a small eye. We are in the process of learning what all of this is and means and how this occured. We’ve seen a specialist who have diagnosed him and next step is seeing the Ocularist. This realy puts a whole in someones pocket if they don’t have insurance coverage. My visits just starte so we have many more to come.

September 25, 2009 - 1:42 pm

patti - Hi
I am totally inspired by your story and so happy to have stumbled upon it. My daughter Julianna was born 8-2-09 with a “small” left eye. After much devastation and trying to cope with this We have seen a pediatric opthomologist who referred us to an Opthalmic surgeon who has referred us to an Ocularist. We’ve been told she is blind in that eye and that this is not genetic. The Ped. Op. said that the tissues the eye forms from are supposed to go away after the eye is formed and in her case did not. Thus causing her small eye problem and the blindness. I am searching and searching for info.on this condition and trying to understand how these clear conformers are going to look . Her iris is so much smaller than her right eye, much like the picture of your son. I hate the thought of her eye not looking normal. I would love any info you may have, how you dealt with this, any photo’s of how the clear conformer looked. If you could take the time to email me back. I’d greatly appreciate. I will be checking out the websites you recommend viewing. thanks for sharing your story!
patti

October 8, 2009 - 5:53 am

Mel - We are in UK and our 16 month old daughter, Kara, also has a right Microapthalmic blind eye. She had her first eye shell (as we call them in UK) at 6 months and her first painted shell a few months later. Hopefully Rio now has his and you will be feeling as great as we did when it replaced Kara’s clear shell….they are so realistic people cannot tell she even has it in (unless she pops it out, as she did at a mall in Phoenix when we were on vacation there last month). Take a look at http://www.macs.org.uk, you will find Kara’s story on their message board (so much was the same as your experience). You can contact me or my wife Teresa through the site and we can send you some photos.

All the best.

November 9, 2009 - 9:32 pm

Shelley Laughton - First of all I have to say that your little one is absolutly beautiful. I was in tears when I read your story but was also so happy to read that someone else is going through the same thing as my daughter and I are. I don’t mean I am happy that this has happened to your son but maybe I can get some answers from other people who are going through the same thing that the Doctors can’t give me. My daughter was born 2 months early with Micropthalmia in both eyes. Her eyes were actually fused shut. She looked like a doll. About a month later they slowly began to open, slits appeared, then eyelashes. She has no corneas or lenses and is completley blind. Several tests have shown that she does see light. When I found out what was wrong I knew she would still live a wonderful life and do so many great things but I wanted to make sure she wasn’t teased and that her face looked as normal as we could make it. Toronto Sick Kids suggested to go see an Ocularist right away. Donna-Lynn had conformers in until April when she had her first set of prosthetics put in. I had them painted the same colour as my eyes. She openes her eyes very wide now and is the most beautiful little 10 month old baby I have ever seen. Back in July when we went to Sick Kids they said corneas are starting to develop. Maybe a miracle? We don’t know. I go back next week to find out if there is anymore development and to have her prosthetics made larger. As rough as this road has been every time we go to Toronto I’m so excited to find out more. I do have some questions that maybe someone can answer. She rubs her eyes all the time and the prosthetics come out. She actually choked on one a few weeks back. Now she sticks her thumbs in there. Is anyone else seeing things like this and what should I do? I put mitts on her but she needs her hands to explore. I put patches on but she rips them off. Please help!!

May 10, 2010 - 2:39 pm

Amber - This is exactly what my 8 month old son is going through right now. Almost identical trips to the ocularist, genetics, endo, several MRI’s and test cause they think something else could be wrong but so far everything has come back NORMAL!

I am excited to check out the rest of your website and am curious if you son developed slower like mine is…as in sitting, crawling etc. Thanks so much for doing this!

Amber

May 11, 2010 - 10:53 am

Freedom - Hi Amber!
He does seem to be taking his sweet time developing in certain areas, now that you mention it. He walked later, and he’s talking a bit later than our first. But it could be related to the Micro, or it could just be because he’s a second-born, with a VERY chatty sister.
🙂

May 23, 2010 - 6:21 pm

Jalanta - Thank you for posting this. My daughter was bron May 11th, 2010 with a micro right eye. This gave me lots of insight on what to expect in the upsoming months. Thank you again.

July 24, 2010 - 12:54 am

Ana - Hi Freedom: My name is Ana, and I am from Guatemala City. I have been alone in this journey with my husband. We have a beautiful baby Adriana of 9 months old. She has a Microphtalmia on her left eye. No one in Guatemala, not even the doctors have a had a case like this, so we went to the BAscom Palmer on January. We are doing the same thing as Rio at Miami, but since we live so far away, we go to Miami every 6 months to change his conformer. It´s great to hear your story and hear someone from the first time, is like a light to me. At the BAscom Palmer they said the same about the bones growing properly and the poor sight she would have, so your story is like hearing mine.She has had a great develop, she even sit and did many things before my oldest girl. Do you think we should visit a genetic Doctor and when? is this hereditary? no one in our family has had a Microphtalmic eye. How is Rio doing? can he see with the other eye? Thank you so much for your time!!!!! and help!!!!!

August 16, 2010 - 9:49 pm

Heather - Oh my, I am soooo glad to have read your photo blog! Thank you, thank you! My son Orion is 4 weeks old and I’m not sure which is it he has bilaterally- anophthalmia or micropthalmia. I have been wanting to find out when it is time, when is it too late to ‘comfortably’ start using prosthesis. Nice photography, too. :::Heather

September 9, 2010 - 1:29 pm

Rena - THANKS! I sat and held my son Titus and cried while I read through your blog and viewed your photo tour. Titus also has microphalmia. Tomorrow we are headed to an ocularist to be fitted for his conformer. It was good to have a heads up, to see and read what to expect from another mom. Titus is 4 months old now and like you this was not a journey I ever dreamed we’d be on!
I found solice in John 9:1
-As he (Jesus) went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
‘Neither this man nor his parents sinned,” said Jesus, “but this happened so that the work of God might be displayed in his life.”-
And so my husband and I pray that through this He would use Titus to display the work of God in his life.
Thank you so much for you blog and the encourgement I found from reading it!
Rena

September 9, 2010 - 6:18 pm

Karen - Thank you so much for sharing the story of your beautiful baby boy. Our 5 month old grandson is being fitted for his first conformer tomorrow. We can olny be there in prayer and will be anxious to talk to our son tomorrow afternoon. You have helped us understand the process so much better.

September 10, 2010 - 6:41 pm

Barry - I wanted to thank you for your website. My sister-in-law saw your website and has taken a little comfort in it. I just wanted to let you know that you helped someone else feel a little better. Their youngest son is starting to go through this now. Thank you for being open and caring.

September 23, 2010 - 12:42 am

Janice Anderson - Wow! Thank you so much. My son who is now 4 weeks old has micro of his left eye. Like others my husband and I were totally blown away by this diagnosis. What did this mean? Could he see? Would he be normal? Thankfully we have recieved good support and good information and are learning more each day. He will be seeing the ocularist on October 18 and will be getting fitted for a conformer soon. God Bless each and every one of you. Thank you for the wonderful information and the sharing of your stories.

November 13, 2010 - 11:53 pm

Heather - I have stumbled upon your blog when searching the conditions; Micropthalmia and Anaplthalmia.
I am a nanny for the sweetest set of twins you could ask to meet. The little boy has these conditions and I had never heard of them before meeting with his family. Your blog has help me understand more what the family has been through before I came to know them.
Thank you very much, as there are not many personal accounts out there; all just technical mumbo-jumbo.
So thank you very much. Have a great day and the best of luck to all of you.

-H-

March 14, 2011 - 1:28 am

Robin - Hi there. Some of the pictures aren’t uploading & I wanted to show our ocularist the picture of rio’s shell with the holes drilled in it so the eye can still get oxygen. My LO Asa (1 year) also has micro eye & we are working with his first shell/conformer

December 7, 2011 - 12:18 pm

Lidisis Achang Rivas - Maybe you don’t know that you helped people who the first language is not english and even when I found your blog and your story and I read your simple but incredible words I felt so happy, I looked to my 3 months daughter and I thought “everything is going to be ok”. Thanks.

February 18, 2012 - 10:58 am

freedomg12 - I am so glad, Lidsis! That is why I did it. I needed to see. Even though I speak English, when the doctors told us, they may have well have been speaking a different language, because we didn’t understand! Where are you guys from?

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