New to the site!

[AidanGregory]

Hello everyone just wanted to introduce myself. My name is Melissa and my son Aidan, 2 1/2 (7/02/2002) has bilateral micropthalmia and is completely and totally blind. He was born with coloboma, cateracts and cysts that grew out of the back of both eyes. In July 2003 we had the right eye removed and replaced with a donated human eye with the coral implant inside it. He was then fitted for the prosthesis or schelaric shell in Oct 2003. In july 2004 he received the schelaric shell or prosthesis in the left eye. We used to live in Grand Rapids, Michigan, but moved for a job transfer to Winston-Salem, North Carolina. In december, Aidan got an Ulcer on his cornea in the left eye, so we are now waiting on a new prosthesis. Aidan also has Septo-Optic Dysplasia. Aidan functions at about a 11-12 month old. He is standing with help and sits up well. He doesn't talk, but sings beautifully in his own language. He has a smile and laugh that are intoxicating! Would love to meet others and hear their stories. Our email address is melissaandcraig@netpenny.net

[ohbilatmicromom]

Hi Melissa
My name is Michelle and our son is Jalen. He was born with bilat micro with cataracts. He has all the normal eye parts, they are just small and some are a little malformed. He had his cataracts removed at 3mos of age at Mott's Children's Hosp U of M by Dr. Archer. I see you were from MI so just wondered if your son was born in MI or not? Anyway, since the cataract removal and the realization he had some vision to try and utilize, he was fitted for clear shells and highpowered glasses at the age of 5mos. Would have been 4mos but he got the flu and was hospitalized due to dehydration and that set us back a month. He also has nystagmus of both eyes and amblyopia of the left eye, but I guess not serious enough to operate on the muscle. Dr. Archer does not want to mess with his eyes, since he has useful vision. With the conformers and glasses he is able to clearly see big letters and pictures and will actually watch TV now. (this is only within the last 2 mos) He is quite the musician and has an absolute love for music, although having a Daddy who sings and is a musician probably helps with that skill also. He also had right lambdoid craniosynostis (early closure of the back suture of skull) and had surgery for that also at Mott's at about 1 yr of age. He was a little delayed in speech and has some fine motor delays but nothing too dramatic. I guess his microphthalmic eyes are on the bigger end, but they are still small to me!

He is our only child so far also.

Sorry we had to meet under these cirmcumstances, but nice to meet you! These little angels bring smiles to our faces no matter what!!!!!!

Here is my email if you would like to email me:

mballard@buckeye-express.com


Michelle

[chipandmichelle]

Hi - my name is Michelle Bryant and my son Cole was born on May 11, 2005 (almost 4 weeks ago). I am also brand new to this site and am looking for some people to talk to. Since my son is not even 4 weeks old we don't know all of what he has so far, but we have been told that he has micro ophthalmia in his right eye. His left eye seems to be fine and the Dr.'s think he can see out of the left eye normally. We are having an MRI this Friday (the 10th of June) to find out what exact parts of the eye are there and the Ocularist is going to fit him for a mold while he's knocked out. The Ocularist thinks Cole will get his first conformer on the 15th of June (our next appt.). I'm obviously worried about the MRI...seems really young to knock a child out. I'm also not sure what Cole will look like once the conformer is placed in his eye...right now his eye is just shut. I'm glad to know there are other people out here. I live in Seattle, Washington and would love to talk to anyone about this. I'm just learning all the terms and treatments that go along with this. My email is chipandmichelle@comcast.net.

Thanks,
Michelle

[suz]

Michelle,

What ocularist are you using in Houston? We live in Alvin and all very new to this. We are looking for a good dr's and ocularists in our area.

My grandson's case sound very much like your son's.
Other than the microphthalmia, he is right on course developmentaly. So much so that his genetic dr decided not to do the MRI on his last visit. We are seeing a opthamologist in Clear Lake but I strongly feel we need a second opinion. She is very laid back in her treatment.

She wants to wait till he is 5 years old before starting any treatment. I don't even think she is aware they make clear conformers.

Any contacts in the Houston area you can give us will be greatly welcomed!

[tank06]

hello everyone. this is Brad's mom Sarah. I just found the group and it will take me a little while to go through all of these posts! As my mother in law said brad's case does sound a lot like yours. For right now all I am looking for is a new pedi. for him. Someone that will understand his needs a little better. If anyone knows of any doctors that could further help us i would like to know of them. Thanks!

[JessicaHolt]

Hello Everyone- My name is Jessica and I am mom to my beautiful daughter Jadyn. She has unilateral micro in her left eye, and a mild coloboma in her right eye. She is 6 weeks old and had her first conformer placed on wednesday (May 31). Doesn't seem to be bothering her at all, but now she can open her left eye with ease. We had a ultrasound done on her left eye at 3 weeks that revealed she did not form an optic nerve or retina in the left eye. At that appointment I found out I, too, have a coloboma in my right eye. I also have a 2 1/2 year old daughter whose eyes formed normally so now we have an appt with the ophthamologist to make sure she has great vision or if she has a coloboma like her sister and I. If there is anyone in the Sacramento area I would love to meet you. I also have great doctors and ocularist who have been very encouraging. We are hoping she will have her "painted" shell by 3 - 4 months (at least that is what the ocularist is hoping for).

[Shalimar]

Hello, did your child need surgery? If so, who were your doctors? We are having difficulty finding surgeons

Thank you