Bilateral Micro

[ohbilatmicromom]

Hello
I was just wondering if there were any other parents or people out there with or with a child with bilateral microphthalmia. Our son is 16 mos old and was born with cataracts on both eyes and bilateral microphthalmia. I would love to talk with other parents who are experiencing similiar feelings and issues.

I understand this did not happen to me, but sometimes I just can't help but feel down. I feel bad my son has to go through such a rough life. I understand even if he was not born with this something else could happen, but since day 3 of his life (when we found out) he has not had an easy time. Doctors and specialists and tests galore. He also had right lamboid craniosynostosis, which they say is not related. But I often wonder.

Any support would be greatly appreciated. We go to the University of Michigan's Kellogg Eye Institute and see Dr. Steven Archer and Greg Dootz. We absolutely adore both of them!!! ;D

Thanks ::)
Michelle

[Chandra]

Hi Michelle,

My name is Chandra. My son, Ryan, was born on May 7, 2003 with microphthalmia in his right eye and anophthalmia in his left eye. He is completely blind. He is getting conformers now and will get prosthetics in the future. I would love to communicate more with you about what you have and are going through. I live in Southern California.

[ohbilatmicromom]

Hi Chandra
Sorry it took me so long to reply. You can email me at mballard@buckeye-express.com and we can definitely stay in touch. I try to check it once a day.

How is your son doing? Did you get the conformers yet? Is he tolerating them? We were lucky that Jalen tolerated them. It was very difficult emotionally at first to clean his eyes twice a day and to take them out and clean them, but it gets easier. Jalen STILL throws a fit when we clean his eyes and take them out. We rinse his eyes with normal saline solution twice a day and he still fights us tooth and nail and its been almost a year that he has had them. I really hope it gets better. Now however I do not get upset emotionally cleaning his eyes. I know I am not hurting him, he just doesn't like it. RIght now his conformers are clear because he luckily has some vision. I guess it is not very common for a child without a lens and bilat micro to have this much useful vision. He must be a miracle.

I am assuming you are involved in Early Intervention. How about BCMH? Do you have that? What about Social Security, have you applied for that? Do you have Medical Insurance? If you don't want to answer all of this here, seriously just email me. I would love to help and chat.
Hope things are going well. :)
Michelle