Last Wednesday we took Braden to the Jules Stein Eye Center to have his electroretinol gram test done. This test was, what our doctor said was, really the only way to go to determine what is causing Braden's Nystagmus. So of course we wanted to do it. What we didn't realize is what it entailed. Basically this is what they do: First, they put drops in your eyes to dialate your eyes and more drops to anesthetize the surface of the eye. Then, you sit in a completely dark room for 30 minutes. Then, they put an eye contact in your eye that is attached to wires and they attach wires to your forehead as well. Then you look into bright flashing lights and the machine measures the electronic movements in your retinas to make sure they are working properly.
Sound like something a four month old baby wants to go through? Yeah, right! Braden did really well for the eye drops and sitting in a dark room part. No problem at all. But as soon as they tried to put the eye contact in, he started screaming! Now, the biggest problem with the crying is that the whole purpose of the test is to measure electronic movements, and when he is crying, it creates electronic noise, and alot of it! Therefore, they could not properly administer the test and we had to go home without it being done. At this point, the choices are to either sedate our beautiful child and do the test again (NOT happening) or wait until he can have the test done without screaming.
Brian and I both really felt like we wanted the test done for the sake of knowing what is causing this problem so that we can help Braden manage it, but the truth is, no matter what is causing it, we really can't do anything to correct it. The doctor doing the test said it is either a retina problem or a macula problem, and either way, nothing can be done to fix the problem. So, at this point we feel like we will wait a few years until Braden can understand what is going on during the test to have it done. So, our next step is to meet with the Ophthalmologist in December for a follow-up appointment.
For those of you who are confused as to what this could mean for Braden, let me try and explain what some people with Nystagmus face. Some people are color blind. Some experience problems with depth perception. Some see as if their world is shaking. Some people can't see very well at all even with eyeglasses. Some people can't attend normal schools and they will never be able to drive because their eyes cause such a disability for them. Now, because we don't know what is causing Braden's Nystagmus, we have no idea what problems he will and will not face. Only time can tell. However, Brian and I both feel that he won't have too much trouble with his eyes because Braden is always interested in his surroundings and he loves to look at everything. He laughs when we make silly faces and do silly things. He follows us with his eyes when we walk through the room. He stares at what he is holding in his hands as though it were the most interesting of things. He loves to look at the books I read to him.
So, we will keep you updated as we hear from the doctor or when we go to his next appointment. As for now, we are enjoying our baby boy so much we hardly notice that his eyes are different.
