Eye Surgery #1

Thursday September 1, 2011, Lilah will have her very first EUA( exam under anesthesia) and her very first eye surgery. Click here to read about what will likely happen during her surgery.

Most of you that have read and followed this blog and her story from the beginning know that I have tried EVERYTHING in my power to prevent surgery. I am a stickler when it comes to patching and working her eyes. I believe in prayer. I believe that prayer changes things and/or changes the perspective on those things.

When I learned that Lilah would need surgery even after all the hours of patching I felt very guilty, like I hadn't done enough to help her. My friend Sam, an Optometrist, told me that I should be the opposite. She said I should feel proud because Lilah not only has vision but because of my "anal" patching, she now has binocular vision. Irene, Dr. Greenberg's nurse, spent over an hour on the phone with me describing the surgery, where, when, and why. She told me to expect better balance and walking, and that Lilah would have better vision because her eyes would be working together more often.

I needed to hear that. JUST like I needed to read the words my friend , Amy, wrote to me telling me that Lilah loves life. That she is so happy JUST the way she is. Amy is right. I have mourned and mourned and grieved the dream I had for Lilah. But Lilah IS happy. She is scared to walk and do things because she cannot see it like we do, but she is learning. I pray that this surgery gives her such confidence.
I am not scared of the surgery. I am not scared of what will happen. At least not today. Dr. Lee, Lilah's corneal specialist, has agreed to come in during the surgery and EUA to check out her eyes and corneas. THAT makes me VERY happy. We LOVE Dr. Lee. We haven't seen him in over a year and a half. We trust his judgment. His guidance had gotten her so far. Honestly, I put up with Dr. Greenberg because Dr. Lee recommended him. (Greenberg is NO where near as awesome as Dr. Lee but gratefully no where near as cruel and evil as Dr. D here in Savannah)

I took these pictures this morning as Lilah was eating breakfast. Here is a picture of what her eyes look like. You can see how clear her corneas look from where they began. But this image also shows how her right eye (the one on the left of your screen) turns in.
My girl is so happy. She smiles and giggles and dances often. She also fights me hard. She is one determined little girl. I know that this determination will take her far.

So, as we prepare to leave for Atlanta this Wednesday evening we wait to hear whether or not we will get a flight from Angel Flight. We have plans to drive up to Atlanta after Aaron gets off of work Wednesday evening. Lilah is scheduled to be at the hospital at 6am Thursday. Her EUA and surgery will begin at 7:15. The procedure should take about 2 hours. She should only be in recovery for a little while and then we will get back in the car and head home.

We are asking for prayers for safe travel, surgery to go very well, and for protection for our children here at home and for Dr. Lee and Dr. Greenberg.

I am more nervous about Lilah's EUA because she has not had her pressures checked in over a year. Nor have corneas have not been tested for thickness during this time. I am anxious to hear what they really see in her eyes. Are they clearer? Can they see both retinas? Optic nerves? How do the parts of her eyes look?

As I write these fear and anxieties I also know that we have so many more battles we must face: the upcoming MRI to determine tethering, possible spinal surgery if that is true, Lilah's many delays, continued fight for SSI and medicaid(oh the joys of THAT fun!)...

But, I also know... and I know this to my core: God is in control. Even in the midst of ALL of this uncertainty, God remains in control. I know HE loves Lilah VERY much. Lilah will be ok because HE is in control.

We bought the movie Soul Surfer a few weeks ago. We have watched it over and over. The more I watch it, the more I realize that God gave me Lilah so I would tell of HIS love to all people.

Lilah is no accident. Lilah's eyes are NOT a mistake, as Dr. Devarro so un-kindly told us at birth. Lilah IS perfect. Not by THIS world's standards, but what she does. WHO she is, what she SHINES tells of something FAR greater than this life. Lilah is here to spread the good news of Jesus Christ. Nothing will stop her. Nothing will stop me from telling her story and sharing of her miracles.

Jeremiah 29:11