New to this site

[shelbysmom]

:)
Hello Everyone!! I'm so happy to find this site from the newsletters. Let me first describe my situation. My daughter Shelby was born with micro in the left eye. I was devistated at first and thought there was something I did or didn't do during my pregnacy. The doctor assured me there wasn't anything I did or didn't do.

My daughter first saw the ophthalmologist at 9 days old. He has since been wonderful to us. She is now due on the 20th for her yearly exam and hopefully she can tell us what she can and can't see. She will be 5 on the 18th of this month.

We have not used conformers as her face has developed accordingly. Her eye is much small than the right one but her face has developed normally. Her pediatrician wanted to do a CAT scan to see if there was some neurological problems in the back of the eye as she said children with this affliction have. I refused, because I have a son that is 9 1/2 years older than Shelby and she was acting just as he was at that age. She has been meeting and or exceeding her milestones.

We may get her glasses to make the left eye appear the same as the right eye for cosmetic reasons and she will be entering public school.

I do wish that the next conference would be held on the western side of the US for those of us who live in the western states to attend. We live in Oregon and would love to email with parents closer to us with the same affliction.:)

[sarabault]

Your story mirrors mine! My daughter is 4 and has left micro also. We are in Michigan. At the last conference there was talk of the next conference in Los Angles or Phoenix. I really don't care as long as it is warmer that Michigan in April.

Hope school started well for all.:p
Sara

[sarabault]

Your story mirrors mine! My daughter is 4 and has left micro also. We are in Michigan. At the last conference there was talk of the next conference in Los Angles or Phoenix. I really don't care as long as it is warmer that Michigan in April.
We put our daughter in glasses when she was 2 just as a safety issue. Accidents will happen.

Hope school started well for all.:p
Sara

[ohbilatmicromom]

I guess my first question is does she have any vision at all in the micro eye and how much vision does she have out of the "normal sized" eye. Her micro eye must be on the larger side if she is not having any structural issues of the bones in her face, since she is not wearing a conformer in the micro eye. Neurological issues of the eye? Do you mean because she has unilateral micro the doc wanted to check for any possible neuro issues or to see the structure of the micro eye? I apologize just alittle confused. The theory is with micro that the eyes develop at the same time as all of the other major organs, so the docs wanted to check to make sure all others developed normally as well. At least that's my understanding

I see you have seen an opthalmologist but not an occularist? Have you actually seen an occularist? You stated she will be 5 years old soon, so I am just curious as to why no occularist or shells have been made as of yet?

[shelbysmom]

To answer the questions......No problem asking them. I'm not offended at all.....I guess the MRI was to see if there was any neurological brain problems with the optical nerve and the retna not developing.....At least that's what I was told. I refused to put my daughter through that so we didn't do it as she is just fine in that area.

We think her micro eye sees shapes, but she gets very upset when we patch her "normal" eye and ask her to just see out of the micro eye. Hopefully she will be able to tell us more this time as she is turning 5 on the 18th.

Her left eye is very small and noticeable. But for some reason her face grew as it was suppose to. Actually I had never heard of a occularist??? until yesterday. Her doctor has actually seen this condition which is rare in our area and he came from the University of South Florida where he was an associate professor and has actually seen this condition.

[shelbysmom]

Hi Sara!!!

So Happy to meet someone with a mirrored story as mine!!!! I would love for the next conference to be here on the west coast somewhere!!! Hint Hint!!!

We have not been able to attend on the east coast because of the cost in flying......

I understand wanting it warmer than in Michigan in April...heheheh

Please write back and we can chat more.

[aprilk24]

Hi SHelby's mom! I was just reading and noticed that you had not heard of an occuarist and that Shelby's micro eye was noticable. My son is 18 months and has bilat micro. He has had clear conformers since he was 8 months old. They put them in for facial structure but mostly for lid opening. It has really helped his appearance as well. He didn't really have any issues with the facial structure. BUt what I thought might help you is we recently took out one of my sons conformers to clean it and we couldn't believe the difference they have made. He has a caring bride site at www.caringbridge.org/visit/masonarchibald and we have a photo on there under photos that shows the difference if your curious. Have a good day. Do you have any pics of Shelby? April

[JessicaHolt]

Hello. I, too, am surprised you have not seen an occularist. My daughter will be 5 months on Sunday, the 16th she has already been through about 4 conformers and is ready to receive her 2nd "painted" eye. We don't know how her growth would have been without the conformers because we started them at 2 weeks old.

Jadyn (my daughter), too, has micro in her left eye only, a coloboma in her right. We know she cannot see with her micro eye as there is no retina and no optic nerve.

I love hearing other peoples stories, it interests me how different dr.s do things so differently.

Jessica

[sarabault]

speaking of MRI's. My DH has been thinking that our daughter (left micro) should get one. She's 4 and never had one. We are also thinking that when they knock her out for that the ocularist could take a new mold for her shell. I think part of her goopy discharge is due to fit. (we never had any problems the first 6-9 months she wore a conformer, only after he enlarged it) I don't know about the MRI, I guess if there were going to be other problems, we would have noticed by now. Maybe that's denial???
Sara

[shelbysmom]

Hi all,


I just looked at Mason's picture on the caringbridge webpage...What a cutie!!!!!!!! He is darling.

And I can't tell you guys how nice it is to "talk" via this site to others with the same concerns as mine and for lots of information.

Shelby's eyelid does open. It's her eyeball that is small but it also tracts with the right eye. Could you tell me what the conformers are exactly for?? We are seeing her opthalmologist on the 20th for her yearly exam and hopefully she can be more verbal in telling us what she can see. Cross your fingers. We know she sees shapes at least but not to what extent.

I could send you a pic of her or post it on this site of my story....

Let me know what you would like.

Jeanene

[aprilk24]

HI Jeanene! HOw did SHelby's appt go? DId you find out any more? I'll tell you my perspective of conformers. They told us that they needed to be placed for lid support (help keep his eyes open) and facial structure growth. They have also helped his appearance. Because they are so thick, they seem like they magnify his little eyes. He never really had a problem with his facial structure but maybe could have if they hadn't been placed. I do notice when they are out that his eyes look sunken. We just returned from our occularist and had Mason's 4th set placed. It's not all fun but it has been worth it. Being that Shelby is 5, you may have a harder time getting her to have them in. Our occularist is so patient and helpful. He said he would be more than willing to answer questions about conformers. HIs email is timbarrett@midwesteyelab.com. I'd love to see SHelby's story on the site. JUst email Jodi Dennis the story and a picture and they'll put it on. :) April