New here and have a GREAT Occularist!!!

[romybeth]

Hey all!

My name is Romy, my husband Jim and I have 2 boys. Henry 2yrs old,( with perfect sight).. and Linus 10 months old with micropthalmia in his right eye.

He was diagnosed 3 days after he was born and had been wearing a clear/black conformer since he was 6 weeks old. he received his first painted eye when he was 5 months old and is now on his 3rd one ( he gets a new one every 6 weeks or so) .

Originally we were going to a woman out of NC, who was charging us an arm and a leg each time we went to get a new clear conformer ( about $550 every few weeks) Our insurance would barely cover anything because she was "out of our network" as we are here in GA and she was in NC......So, every month we were shelling out $550 a month for "stock" conformers that she would take back when she's switch us up to the next size.... we were also told that Linus wouldnt get a painted eye until he was at LEAST 3 yrs old. At which time prices would go up to $2500 per eye.

I just about DIED when I realized that we were heading quickly into the red with that situation. We reserched other occularists in our area and found someone I believe is an ANGEL put on earth for families with kids who need prostheic eyes. His name is William "Tal" Cox, out of Atlanta GA.

After seeing him in January, he felt it was important to make the conformers look like real eyes, for the parents emotional healing and strengh. Linus is on his 3rd one now and looks beautiful.

This is Linus @ 10 months -
http://i16.photobucket.com/albums/b42/romybeth/DSCF2951.jpg
I wish you all, all of the best and look forward to being part of this community ;) ;)

Romy

[jesslibra22]

Your son is adorable!!! :)

[mom]

Your son has beautiful eyes!!

[ohbilatmicromom]

He is gorgeous! I agree, you have a WONDERFUL occularist!

[romybeth]

Thank you all :) Linus is doing quite well... He is on his 5th painted eye.... we will be going to ALT to have his next one made and fitted here in the next few weeks. You know he's growing out of it when it falls out more often, or spins alot... :o

Sometimes when it is out I put my hand over his seeing eye, to see if he can see out of his littleone.... a mother can only hope for miricles, right. But I have to say, the pain I felt when we were first told about his condition has been replaced with pride. Linus is such a sweet boy, he loves his older brother so much, he is so brave, and is never trouble. He just goes with the flow... laid back, ya know?

I know we have chalenges ahead, like any parent would.... but I will say I feel truely blessed to have Linus in my life. He has taught me humilty and unconditional love, even more so than I thought I had already learned in my life.

I send you all lots of love and best wishes!
Romy

[4Him]

Thank you for your information. Your son is beautiful! I sent you a private message with some questions, I hope you get it. Thanks again for sharing!

[romybeth]

Hey Kim

Sry its taken so long to get to you... I dont check ICAN with much frequency and I have learned people dont check in, or write back that often....

So I suppose congrats are in order first :) Babies are always a marvel!

As for my experience with my Linus and Microphalimia......I never got any indication that anything was wrong durring ultrasounds. MY concern was gestational diabites..... as I had it with my first son and it got worse with Linus.

Here are my feelings about Lisa in NC..... she came to Savannah..... her sale pitch was really hard for me, but I took it, as I was so fresh from having him and thought the worst... and wanted to do EVERYTHING I could for my son.....

I was told at my first visit:
expect to pay $525 each vist
you will visit every 4-6 weeks
insurance may not pay, but you must(pay).... and she will (work with you on payments)
conformer would be clear and possible 'stock' (premade/used) for the first 3 years

Kim, we were charged $75 just to talk to this woman.......than given a 'stock' eye (one already made and possibly used) and charged $525 for it only to have it taken back when it was 'too small'....

Tal is great... he believes in getting the conformer made to fit and look great... hes understands how important it it for us to feel we have a child that shouldnt be looked at or treated any different than anyother child.....

Linus is doing great... he is 17 months and is in great health, according to his checkups... he has bee going to Montessori School since he was 13 weeks ( as DH and I have to work) and is developing beautifully...... he walks, chatters and plays like any kid his age... I have noticed he is much more laid back than our first son..... but that comes with each child....

Kim, I invite you to call me to talk more.. i can fill you in much more verbally than I acan thru email. my # is 912-507-9111

I hope to hear from you ,
Best,
Romy

[VicciR]

I just wanted to say hi & introduce myself. My name is Vicci & I have the same condition as your cutie boy Linus. Same side & everything. I'm so happy that you found an occularist that you are comfortable with! The prices of eyes are rediculous anyway, I agree. I am almost 30 years old & when I was an infant to about 10 years old I was going to Major & Googleman for my eyes, then my mom heard of another occularist that opened a practice here in St. Louis by the name of Bruce Cook so we went to check him out. We came to find out that he & his secratery both wore false eyes & that made us more comfortable. So we swtched. Bruce Cook is great & you know how sweet he is? I was in the office getting a new eye made on 9-11-01 (as all the attacks were happening) because I was getting married that following weekend (9-15-01) so he did my eye for free as a wedding gift so my eyes would look perfect for my big day & our pictures. :) So I'm happy you found one that you are happy with. & don't worry always remember that he can do anything. He will be able to drive in the futuer too. If you have any other ?s please feel free to contact me! My email is : VicciRadake@hotmail.com

[Hayley48]

Hi Romy,

Hope this note finds you well. Linus looks amazing!! I am new to the forum, my husband and I have very recently adopted a 2 year old baby girl, micro both eyes, and still in very much the 'learning' stages. We are currently in India finalizing all her paperwork but would be heading back to our hometown in Atlanta within the next month or so. Can you provide us with the name of your 'hero' ocularist :)? Raveena currently has a conformer in her right eye but there isn't anything in her left eye as she previously had a cyst there. Anyway, hope we can be in touch, thanks, take care.

Hayley




Hey all!

My name is Romy, my husband Jim and I have 2 boys. Henry 2yrs old,( with perfect sight).. and Linus 10 months old with micropthalmia in his right eye.

He was diagnosed 3 days after he was born and had been wearing a clear/black conformer since he was 6 weeks old. he received his first painted eye when he was 5 months old and is now on his 3rd one ( he gets a new one every 6 weeks or so) .

Originally we were going to a woman out of NC, who was charging us an arm and a leg each time we went to get a new clear conformer ( about $550 every few weeks) Our insurance would barely cover anything because she was "out of our network" as we are here in GA and she was in NC......So, every month we were shelling out $550 a month for "stock" conformers that she would take back when she's switch us up to the next size.... we were also told that Linus wouldnt get a painted eye until he was at LEAST 3 yrs old. At which time prices would go up to $2500 per eye.

I just about DIED when I realized that we were heading quickly into the red with that situation. We reserched other occularists in our area and found someone I believe is an ANGEL put on earth for families with kids who need prostheic eyes. His name is William "Tal" Cox, out of Atlanta GA.

After seeing him in January, he felt it was important to make the conformers look like real eyes, for the parents emotional healing and strengh. Linus is on his 3rd one now and looks beautiful.

This is Linus @ 10 months -
http://i16.photobucket.com/albums/b42/romybeth/DSCF2951.jpg
I wish you all, all of the best and look forward to being part of this community ;) ;)

Romy