Thursday, June 9, 2011

famous eyes.

"Look at her eyes! They are just gorgeous!"

And they are. They are stunning and breathtaking; large and delicate blue.

But they aren't seeing. Or at least not well.

Today's appointment in Chicago was to visit with yet another pediatric opthomolgist. This will have been the 3rd we have seen in the past 5 months. Each has looked into our lady's eyes and said the same thing, "they look structurally normal." But in my gut I have known all along that she isn't seeing me and there was more to the story.

When I first took Mabel to her primary physician 5 months ago, it was because I asked Rachel if she thought that Mabel was able to see me and Rache quickly confirmed with an answer I will never forget: "No she isn't."

It jumped out at me like glass shattering in a crowded restaurant and that is where our journey began. Little by little I have stood on the verse that I love so much, Proverbs 16:9, and trusted the Lord to direct my steps in this journey. We have trusted the Lord to bring us answers through doctors that He leads us too. Today I felt completely at peace with where the Lord has directed us. It is an amazing feeling to be slapped with the reality that you and the Holy Spirit are doing it together and you are in the center of God's will.

In the middle of physical therapy, occupational therapy, online research, seizure diagnosis, medicine, other specialists, everyday distractions, and trying to maintain a normal life--I had almost forgotten or overlooked Mabel's eyesight. We had seen two eye specialists who had agreed that her eyes looked good. They both suggested that we have today's test but I didn't feel a sense of urgency at the time. Our neurologist [who I LOVE], is the doctor who pushed me forward into today's testing, showing some serious concerns to what could be a huge clue into what is really happening with all of Mabel's symptoms.

Mabel has never really looked at us. Not in the way that any other baby does, or should. I have known that. Everyone who sees her knows it. Even complete strangers have waved their hands in front of her face to try and get her attention. I was set on telling the next random person that she was blind just to avoid the questions that follow the annoying antic. Now, I have an answer.

It was a long day. Things went rather quickly and it almost feels like a blur. We saw a woman first who took Mabel's history and who would later do the actual ERG test. Her eyes were dilated and then we waited for an hour. As we waited, a volunteer team came in and sang children's songs accompanied by an acoustic guitar. I snapped back to reality and remembered why we were actually there. I still can't believe this is me, talking about my life--at a Children's Hospital.

The Dr. finally saw Mabel and said that she agreed with the previous doctors and that her eyes are structurally normal.

As I mentioned a little yesterday, an ERG test is done to test the cones and rods of the retina. The retina is a multi-layered sensory tissue that lines the back of the eye. It contains millions of photoreceptors that capture light rays and convert them into electrical impulses. These impulses travel along the optic nerve to the brain where they are turned into images. To make that easier to understand, think of the retina as being the film of a camera. This is where the picture is essentially produced and then sent on to the brain to process the image. The retina contains two major parts: cones and rods. The cones are basically responsible for central vision. The rods function best in dim lighting. They are responsible for night and peripheral vision.

Science aside, the retina is obviously very important in it's role of vision. The ERG test that Mabel had done cannot tell us how much she is or is not seeing or what she is or is not seeing. It can only show us how well her retina and all of it's parts are functioning. It is extremely important in diagnosing any retinal disorders or diseases.

The ERG is done by numbing the eye balls and then placing a contact lens receptor on the eye. This holds the eyelids open for the test. There are also electrodes placed on the ear and the forehead to show responses in the brain. A large machine was placed over Mabel during this time and different flashes went off, allowing the computer to show the results. We did a set of flashes in the light and then again after being in the dark for 20 minutes.

A normal ERG should show a peak on the graph during the time of the flash. Mabel's graph was essentially flat.

I told Rache yesterday that I thought she would 'flatline it,' only because I think I've known all along that she isn't seeing or not seeing well. Her eyes don't change when we go from light to dark. She is unaffected if we are in the kitchen, car, or outside. She doesn't reach out for me or even prefer me to another person. I just knew. A mom knows.

When we met with the Dr. for the results and she explained all of this to me, I thanked her for answers. I told her that of course I am not happy. It's devastating and hard but I am thankful that we now have a definite answer, at least in the eye department. At best, we believe she can see outlines or shadows. There just is no way to know for sure. We pray someday she will be able to tell us!

The last thing she said to us was that alot of opthomologists refer patients with retinal disorders to her and that she would be glad to continue seeing Mabel because she does, indeed, have a retinal disorder. She also mentioned that she believes this will be significant in helping us find an underlying syndrome or disorder.

What we know at this point, based on the results of today alone, is that disorders like this don't typically get better. We suspect that this is a HUGE piece to a greater puzzle and once we get results from the geneticist we will know whether this is just another symptom or if this is cause of the symptoms we are already dealing with. Until then, we know that what Mabel sees right now is what she will probably always see unless there is a degenerative disorder involved; Practically speaking.

Spiritually speaking, we know that we serve a mighty God. A God who really does answer prayer. He delivered when we asked for answers. He is going to do continue to do so, I believe. I also know that the Lord has a will and I am at peace with knowing that He is in control of Mabel's vision, brain, body and life. And knowing that brings me great peace. Great confidence and an even greater love for the Lord.

This was a very informative post because quite honestly, I am going to need a couple of days to let everything sink in. Daniel and I embraced, cried, talked, and cried some more today. We will probably continue to do so. I cannot tell you how thankful I was for every text, comment, email & call that I received over the course of the past two days. You are my rock and I am thankful that you are in this with me. I know you are. It may be long and enduring but I promise you, if you hang in there with me it will be worth it. Eternity is always worth it and this, my friends, is only a short season in our eternity.

Our God reigns. Today I know that for sure.


Becky said...

I love you! I am hurting for you but know that you are now closer to solving the mystery of the sweetest little woo girl! I am here if you need me.....

Heather said...

Jer 29:11a (NIV) "For I know the plans I have for you," declares the Lord.

Dear Ramee,
I really don't know how to respond to your post. I never really know how to respond to any of your posts, so I haven't, but I read them, and will continue to read them for as long as you post them. I know that you do not really know me outside of maybe my name and what I look like, if even that, but I have laughed with you, cried with you, been in awe with you, and prayed with you, whether you know it or not. For some unknown reason, Mabel touches the very bottom of my heart and Ramee, you are an inspiration. Not just to me, but to any and every person that even gets just a glimpse into your life. I don't think you realize just how many lives you touch with each new testimony of what God does in your life. Your trust in him is quite an admirable trait. You are the parent the entire world wishes that they could be. Like I said, you do not know me. I don't know you, other than what you post. But what I can tell you is that when you're having a bad day or you are doubting yourself in anyway, I'm pulling for you, along with every one else that has read even just one post on your blog. You are amazing and I pray for you, Mabel, and your family often.

Your Sister in Christ,

Verena said...

Hey Ramee...on the one hand i am sorry that the anwers were not positive but on the other hand i am happy that you know now what going on with her eyes. I ams ending you lots of hugs, good thoughts and prayers. I am thinking about you !!!

Valerie said...

I am so impressed by your strength! You are doing a phenominaljob through all these trials! I admire your bravery! Even in the moments you are "down" and crying, your focus is not wavered. You are determined to gather info and answers to make Mabel's life the best possible! My heart is broken that Mabel is missing her vision. I know that even with this and any other disability that may be discovered, you will make the best life possible for her and she will add so much to your life and to ours! Sending all my love to you today!xo

Elizabeth said...

Ramee, I pray God's strength, love, and peace will overwhelm you and Daniel...that you will find refuge in the shelter of His wings. You are right!- our God DOES reign and nothing is too difficult for Him...His eye is on the sparrow...His eyes are on Mabel, and He is faithful. I am believing with you for a healing like Jesus performed with the blind man in Bethsaida...when Jesus first placed His hands on the man's eyes, he said he could see, but the people looked like trees (he was seeing, but not clearly). When Jesus touched the man the second time, he was completely healed. I praise God that Mabel's eyes are structurally perfect and that is the first miracle! I believe the second will be her sight completely restored- in His perfect timing, for the glory of His name. Love, prayers, and blessings to you!

Amy said...

I could just copy & paste Heather's comments here. Ramee, you are so incredibly strong, smart & a loving child of God. I pray for Mabel, you, daniel, your redheads. Stay strong.