Friday, August 29, 2014

Eye update

Here is the promised post about Emri's latest eye exam. I have said before that Emri's vision is one of the most frightening/frustrating/complicated parts of marfan syndrome...and I continue to have that opinion. This exam though, gave us a small ray of light as we learned that something GOOD could possibly be happening in Emri's eyes! The opthamologist at Childrens that we see is a highly sought after doctor, and we literally have to schedule 6-9 months ahead of time to get a slot in with him. He's good...and smart...but blunt...and brutal at times. He began the appointment by reviewing what we had learned about Emri's eyes last appointment. Basically with marfan syndrome, the lenses that usually lie in a crescent shape in front of the eye, many times become loose. When Emri was a baby, we used to be able to watch her lenses wiggle around in her eye-her eyes would look kind of like they were shimmering. Over the last couple of years, I haven't noticed this as much. This is because Emri's lenses have become SO loose that they have balled up into a spherical shape. This "lense ball" is in Emri's field of vision...which is why her vision is so incredibly distorted. Last eye exam the doctor explained that because Emri's balled up lenses are so much thicker than normal shaped lenses, they are most likely putting a lot more pressure on her eyeball and that this greatly increased the risk of developing glaucoma (pressure in the back of the eye that slowly deteriorates vision). If Emri were to develop any signs of glaucoma, it would be important to get her lenses removed promptly....but that wouldn't take away the glaucoma...and it would majorly increase the chance of retinal detachment (blindness if not surgically repairable). SO...the doctor has said to me...probably over 50 times..."You really are stuck between a rock and a hard place." Great. After dilating Emri's eyes with the dreaded eye drops, the doctor came in to do his exam...not expecting to see much of a difference. He found something that surprised us all. Emri's balled up lenses have slipped lower in her field of vision. This was a good thing in the sense that Emri's risk of glaucoma decreased dramatically...because the pressure was no longer being put on the front and back of the eye. Praise God! The doctor did explain that Emri's vision is still completely distorted by her lenses and that there is no perscription high enough to correct this. He explained that eventually her vision will get so bad, she won't be able to function and the lenses will have to be removed anyway. This was discouraging...but then I remembered the eye doctor in Baltimore saying something about some kids whose lenses just slip all the way down to the bottom of the eye, out of their field of vision. I mentioned this to the doctor and he said that he hadn't even thought of that....but yes, although rare, it could happen! If this were the case, Emri would most likely only need to be fitted with a thin set of contacts...and we wouldn't have to mess with her eyes at all. So needless to say, we are voting for option C. We are hoping that praying that some day Emri comes up to us and says that she can see better WITHOUT her glasses which are currently a perscription of -18. What a day that would be!
As of now, Emri functions quite well for having vision as bad as the doctor says she does. It's amazing how well she navigates life. Watching her, you wouldn't be able to guess that she's legally blind and is constantly peering through ball shaped lenses that drastically distort her world. I have often imagined a day where Emri sees the world clearly, without her lenses...and I always wonder if it would be a little scary...maybe she'll want her old lenses back! Maybe her world is even cooler than ours! :)
Anyway, I hope you who actually stuck with me and read this whole thing were able to grasp a little of what is happening with Emri's eyes. And join us in praying for those lenses to drop out of Emri's field of vision, and that her retinas remain strong and intact. Thank you!

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