Saturday, December 17, 2016

Cora's update

Hello many loving people who have been thinking about us and wondering (asking even) if I am going to type out an update. Assumably, you are referring to an update on our situation here in Michigan. Yes, I will get to that, but not tonight. That is a long story, that's far from over, and I'm not sure I'm ready to put it into words yet.

No, tonight I am here to get out my summary of Cora's latest procedure before all the details fly out from between my ears, never to be found again. So, without further adieu, a very short summary of where we've been in the past four years:

At 6 months Cora's eyes were still crossing, as many newborns do. But 6 months is too late for that to still be happening. She had an anesthetized exam at 7 months. It was discovered that she had malformation of both eyes, resulting in the turning in (crossing/esotropia) in her right eye. Also, she had "scaring", also called "atrophy" at the retina in both eyes, which appeared at the time not to be progressive in nature. At 11 months she had eye muscle surgery to straighten her right eye. We've patched her left (stronger) eye 2hrs daily since 6 months to encourage it to work extra hard to maintain a good/decent visual pathway with the brain, and discourage amblyopia (poor eye-brain communication which results in visual distortion). And since then we've seen her pediatric ophthalmologist every 4 months. Whew!

Then... we moved to Michigan.

Little did we know, Michigan is home to one of the foremost eye research centers in the country; the Kellogg Eye Center. We were recommended to Dr. Gappy (PO) who saw her last September. After looking at her eyes and agreeing with most of what her NE docs said, he referred us to a Retinologist who specializes in pediatrics, Dr. Besirli. We saw him in late October. He took pictures of Cora's eyes using two special cameras and came to us with the following additional diagnoses:

Coloboma of the eye - bilateral
Peripapillary atrophy of both eyes
Exotropia (because the eye that once turned in is now slightly turning out. Normal)
Choroidal neovascular membrane - bilateral

It's that last one we hadn't previously heard of. What that basically means is that Dr. Besirli thought it was possible that the atrophy at Cora's retinas was not indeed scarred off, but that it was still active. In the event that his suspicion was correct, he said he could inject a drug called "Avastin" (actually, a cancer drug) into the region which would cause the leaking vascular membrane to scar off.

He asked to do another anesthetized exam, which we agreed to. Although originally set for November 9th, we were bumped twice and she finally had the procedure done last Wednesday, December 14th. So, back to Ann Arbor we went early that morning with our easy-going Cora in tow. She was hardly bothered by all the action. Couldn't have cared less about all the doctors in funny masks, the IV's, and all the medical equipment. She was tickled to be wheeled back into surgery in a big bed all to herself.

When we were finally called back for consult we learned that the membrane in Cora's left eye (her strong eye) was indeed still leaking. Injecting the Avastin would theoretically stop that leak, and potentially restore some of Cora's vision, if any had been lost for that reason (side note: we don't know if this leaking has been taking place since birth, or since three months ago. There isn't any way to know ). We agreed, and he was finished with the procedure 15 minutes later. An hour in post op, and then another half hour in "the go home room", and we were on our way back to DeWitt.

May I just take a moment to say what incredibly magical places childrens hospitals are? My only other experience in one was when Ezra broke his femur, but were were just visiting for a second opinion, we weren't there for treatment or surgery. They had Cora wrapped around their finger at Mott Childrens Hospital. They dressed her little lamb in scrubs, cap and mask included. They let her "paint" the inside of her Anesthesia mask with her favorite flavored chapstick, They had all the TV and toys a kid could want, AND the first thing they gave her after surgery was a popsicle! Aside from the needle still being in her arm when she came-to, she was happy as a clam!

So, post injection, we have an followup appointment with Dr. Besirli in a month. He'll dilate her eyes and take pictures again to see if anything has changed/improved. About half of patients in her
situation will end up needing a second injection, so only time will tell.

How does this relate to her vision?
Good question. No idea. Her vision is another issue entirely. I'd love to say that its unrelated, but in truth we don't know. She doesn't even know. Because she has nothing to compare against except her previous vision, she is her own baseline. I mean, sure, we can run her through standard vision tests, but those only tell how far away you can see things. That is only a very small fraction of her situation. So, we watch her, wait, and do lots of learning in the meantime. We never cease to be amazed by what she CAN see, and the things she can't see don't surprise us all that much. She's also developing a keen knack for "selective vision" which is uniquely similar to "selective hearing" if you catch my drift.

So there you go. I haven't blogged in 2.5 years and all you're going to get today is an update on my dear sweet NEARLY 5 year old daughter. Alas, more later