Whether you turn to the right or to the left, your ears will hear a voice behind you, saying,“This is the way; walk in it.” Isaiah 30:21

Thursday, April 11, 2013

one of those eye posts.

So last week Grant had an appointment with a Cornea Specialist to get an opinion on what the next step for Grant is. 

Very quick recap:

Grant has an astigmatism due to the limbal dermoids on both eyes.
Local Pediatric Ophthalmologist believes it is an irregular astigmatism.
Regular Astigmatism=glasses. Irregular Astigmatism=surgery.
Surgery will be very tricky because of the nature of the limbal dermoids.

So...the Cornea Specialist took a quick look at his eyes and thinks it just a regular astigmatism, and that we should just pop a pair of glasses on Grant and call it a day. Right now the two doctors are at odds. I'm inclined to agree with his regular Pediatric Ophthalmologist because he sees Grant every 3 months, and has done many THOROUGH exams, both with dilation and non-dilation, using many instruments and tools-not to mention his profession includes working with babies and non-cooperative toddlers. The Cornea Specialist did not use tools, there was no dilation, and frankly, he is use to working with adults who can follow simple directions like "look up." Even so, I think the Cornea Specialist is incredibly smart and wants to help Grant.  He also doesn't think "we" should kick our feet any longer because Grant is getting older and it is easier to treat them when they are younger. So the two doctors are comparing notes and opinions and we have follow-up appointments with both in the next month.


I left the appointment VERY frustrated. 

I keep going back to the day he was born and peering into his eyes, wondering what in the world those "white spots" were. I kept telling myself they were probably just swollen tear ducts or something. I mentioned them casually to the RN-she smiled and said it was "eye gunk." I knew she was wrong.

I go back to the countless well-child appointments in his early infancy with his former doctor. How she couldn't tell me what they were, but because it wasn't an "emergency" she wouldn't put in a rush appointment to the only local pediatric ophthalmologist (who stays booked MONTHS in advance). 

I go back to the day he was 6 weeks old and I found the limbal lipoma in the corner of one of his eyes. I remember calling for another appointment with hot tears in my eyes. I remember angrily telling the office that I wanted to see a pediatric ophthalmologist in Chapel Hill immediately. 

I remember going in for a consultation with Plastics in Chapel Hill (for the skin tags on Grant's face) with a trusted Plastic Surgeon, and he, just like that, gave me the official name of those "spots" on his eyes (Epibulbar Dermoids-aka limbal dermoids), as well as the name of the condition Grant has: Goldenhar Syndrome. 

I remember frantically trying to remember all of the fancy names he used so I could go home and google everything about it under the sun. 

I remember going back to Chapel Hill just two days later to meet with a pediatric ophthalmologist who told me Grant's eyes were "perfect" and scared me into NEVER allowing ANYONE to perform surgery because they would ruin his eyes forever.

I remember pondering and praying about his radical diagnoses for a few months before deciding I would absolutely seek a second opinion-with our local ophthalmologist. We love him and have been seeing him ever since. However, we are at this point where something needs to be done, and we don't know what that something is.


This has been such a long, frustrating road. I just want Grant to be able to see, and to be able to see clearly. Right now, we are just praying and waiting for the "verdict" from his doctors.

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