Thursday, July 26, 2012

A Diagnosis, or three.

Whew. What a morning.
Praise the Lord, because whether we honestly believed it, or just gave it lip service, the outcome was, and has always been, in His capable hands.

First, a summary of where we've been, where we are, and where we're going.

As you probably already read (but I can never remember exactly what I've written and what has just been in my head) We went in for this anesthetized exam for a few reasons.

  • Cora's eyes were not tracking. They were turning in. The right one worse than the left
  • One of her eyes was not formed completely
  • She had what appeared to be scaring at the base of the retina, near the optic nerve, in both eyes

After a peaceful evening, a smooth bedtime, and a 2:30am nursing, we woke Cora at 5:45am to be at the surgery center at 6:00. Here's about how the next 2 hours went: Check-in, signature, signature, yet another signature, conversation with a nurse, conversation with an anesthesiologist, conversation with the pediatric opthalmologist. Prayer with the surgical team. Hand sweet young thing off to anesthesiologist. Cry. sit and wait.

At just past 8am Dr. P and Dr. S came out. 

Dr. P spoke first regarding the "scaring", which we shall henceforth refer to as "Atrophe". The atrophy near her retinas (surrounding the optic nerve) is bilateral (both eyes). It is also identical in both eyes. He supposes it has been present since she was in utero. In other words, she was born that way. He said atrophy is not progressive. It's essentially a developmental anomaly. Dr. P does not think this poses any issue to her at all, and does not require a follow up.

Dr. S then spoke about the malformation of her eye, which we will now refer to as a "Coloboma". Her left eye (yes, that's right, the eye that actually looks better and turns less) is not fully formed. This is a reasonably common problem. Ok, not common perse, but he sees a handful of them per year, and while such a diagnosis will effect her peripheral vision, she won't know anything different and it won't keep her from doing any normal activities. Any. The only thing they'll have to watch for as she ages (think 20's to 30's and beyond) is potential retina detachment. Rare, but it happens simply because the nerve doesn't have as much eye to hold on to back there since it isn't fully formed. Did that all make sense?

Finally, Dr. S discussed her eye turning, which we will now call Strabismus. This is relatively common. I bet you can think of at least two people you know who have a wandering or turned eye. Cora's her eyes are misaligned in two different ways.

Her treatment plan: Dr. S has prescribed a patching regimen for Cora. Patching only, no glasses. He "checked her prescription" (no idea how he did that) while she was under and said her eyes do not need glasses. We will patch her better (left) eye (the one with the coloboma) for two continuous hours, once daily, thereby forcing her to use that right eye to see. It's like a work-out for her eye.  This is done so that the neural pathway from the worse eye to the brain is well maintained. Without patching,  the young brain may decide the right eye isn't worth the work, and turn off that pathway. We don't want that to happen. We will see Dr. S again in three months at which point he will likely schedule her for surgery to correct the strabismus. 

Correcting the strabismus will involve tugging gently on the muscles of her right eye such that it is straight. This will not only be done for aesthetic reasons (so she looks symmetrical, so to speak) but also so that she can more easily focus.

When the Dr.'s were don'e talking to us the nurses brought me a crying, adorable, warm, thrashing, infant. She didn't quite know what to do with herself. She was disoriented, couldn't latch to nurse, wouldn't fully open her eyes, and had horrible medicinal smelling breath. After a few moments she would latch, but only for a second before sitting up and flailing for a bit. Then back down to nurse. This continued for 15-20 minutes. Sometime around then I handed her off to daddy so I could go to the bathroom. When I came back she was fussy, but not flailing. She was focusing a little more, and seemed to be more present. As I picked her up and carried her out into the larger room she really came back around, doling out smiles and trying to wiggle out of my arms. 

As much as I thought she'd fall asleep in the car and take some epic nap, she didn't. Nor did she fall asleep when we got home and I attempted to put her down for a nap. "mom", I could hear her saying, "I napped for, like, 45 minutes on an operating table. a girl's gotta play!" So, she's upstairs with Jonathan being her normal self plus a little feisty streak left over from the anesthesia. 

Thank you so much for your prayers - we're so grateful for friends that care for our kids. It looks like we've got a plan for the next three months, and then a potential surgery, so I'll keep you informed as I learn more.


learning to foster said...

thanks for keeping us updated. What a day. I'm thankful there is a plan and that her life will not be affected. Where did you go that the doctors prayed with you. That's great

Anonymous said...

We give God thanks for this good news.

Anonymous said...

Thank you Lord that Cora is full of life! We praise you for Doctors wisdom, we pray that the patching works well. -Kristina Cline
P.S. Super fast update, thanks!

Anonymous said...

Thank God it's something simple to fix and not epic surgeries to fix or loss of sight. Hope the patching works you'll have to post pics of pirate cora as you get started . Vanessa

Nat Crawford said...

I'm so glad to hear that everything went well and that the solution should be simple! Praise God! Patching for us was a struggle but mostly due to his major vision issues. With sweet Cora, you should have a much easier time since her vision is good! Huge congrats on a healthy and happy baby!! Let me know if you need advice on the patching thing.

Erica Boivin (Dominique's mom) said...

Oh Melissa, my heart goes out to you. It is so hard when something is wrong with your child. One of my nephews had to have patching and he is now a tall 18 year old with perfect vision! Andrew also had double vision due to strabismus that we didn't catch until he was in kindergarten. He did vision therapy and correcting prism glasses for 3 years. His vision is now great! You little Cora will be great. My prayers are with you and your family.

Brian said...

Sorry, just now got around to reading this. You expressed some curiosity about how they checked her prescription. Last time I went to the eye doc they did this thing where they checked it using a computer and a lens. I have no idea how it worked, but once they did the "rough check" with that thing they "fine-tuned" it after that. I was really surprised with how accurate it was, considering they just pointed a lens (with a picture behind it) at my eye, made it go blurry, and from that got a very close guess as to what my prescription was. I can imagine that technology has been awesome for young children who can't say "A looks better. Now B looks better. A. B." etc.

In related news: we love little Cora! :)