Yesterday was a very long day...physically but more than that emotionally.
We took Alex and Sammie to school, left Eli with GaGa and GaBill , and drove to Atlanta for Lilah to see Dr. Marc Greenberg: Pediatric Opthalmolgist.
Lilah's was amazing the whole day.
Lilah babbled in the car the entire way to Atlanta....except for the small catnap she took. When we arrived at the Doctor's office, we filled out the paperwork and waited. We were taken back to the exam room and Dr. Greenberg came in. He said he wanted to get her pressures first. He got her pressures VERY quick and in a totally different manner.She didn't cry, flinch, or move. Her pressures were great. (15, 18) But Dr. Greenberg said that that means that the Trusopt is working and she obviously needs it...if not her pressures would've been around 10. He said after seeing her chart and diagnosis he expected them to be around 35, so at least her pressures were within normal range, even if on the medication. He asked me to put Lilah on one knee and we placed Lilah's head into the hole for him to look at her eyes under microscope. Again...Lilah did great. She didn't cry, move, or scream. She sat still and let him look into her eyes.
He pushed his chair away and said he was done. He began writing and writing. I began nervously asking questions. He told me that he wanted to dilate her eyes and then tell us what he thought.
Next, he placed the dilating drops in her eyes. We were sent back out into the waiting room, and watch her pupils get REALLY big. Lilah was still in a great mood. After about 40 minutes we were called back into the room.
Dr. Greenberg looked and looked at Lilah's eyes. He used different tools to see inside her eyes,he used a magnifier, placed lenses over her eyes and looked....and looked...and looked.
Then he got very quiet and sat down and wrote, and wrote, and wrote.
VERY quiet...all we could hear was his writing.
I couldn't take it anymore....
"What did you see?" I said.
He stood up and pointed to the eye diagram beside of us. He described what he saw and her condition.
Lilah's left eye has Sclerocornea. Lilah's right eye is definitely Peters, with a variation of Sclerocornea on the peripheral. NOT nomal for this condition.
He began to talk to us about transplants... and I got nauseous. He told us how the corneal transplants only have a 20% success rate, and how if it were his child with one eye with Peters...he would NOT do a transplant. Relief. Then...here comes the truth.
Lilah's left eye...the clearer eye....still has significant cloudiness on the back layers of the cornea that we cannot see with the naked eye. Lilah's right eye is still very cloudy, smaller than the left, and it has a much more narrow chamber and NOW...the hard part...her brain has already begun to "shut it off." I asked what her acuity is...since many of you have asked and I was interested myself. He said...that is really not important right now, but her right eye(the worst) maybe 20/400 or 20/200. He said her left could be anywhere from 20/100 to 20/60 but that is a HUGE variation.
Lilah is and will always be legally blind...at best. We knew this. I have blogged about this in previous posts. Hearing it...and seeing it...and having it spelled out in black and white are very different.
Now..to make myself very clear.... Lilah will never see like I do. Lilah, if we are lucky, will be able to see "the food on her plate and walk around in her environment without knocking into things."
In order to TRY to help the clearing of the cornea.....Dr. Greenberg is switching Lilah's eye drops. Lilah has started Lotemax 3/day. He said that the Lotemax has less side effects than the FML.(cataracts,etc) He said that I must increase Lilah's patching to 3 hours/day! He said that we need to get the brain to register the right eye, even if it is JUST light, so that if something were to happen to her good eye, she could at least see light and dark. He also said that sometimes these eyes will clear on their own and that many times Drs. jump to surgery too fast. He said that we also do NOT know what God has planned for her eyes!
Now...I am faithful enough. I believe in miracles. I will NOT settle for this. I will NOT settle that the Lord is done with her. I will NOT do it!
He's NOT! I know it. I know...as I type this...tears streaming down my face...I believe HE WILL HEAL HER!
I will NOT give up...NO... NEVER.....NEVER....NEVER!
The Lord is true and faithful. I am HIS servant. I trust HIM. I do NOT understand HIM, but I TRUST HIM! I am weeping. I am NOT going to accept this diagnosis as final. My God can and WILL perform a miracle with her. I HAVE to believe this!
Many of you have asked what you can do to help. I will tell you EXACTLY what I need....
Please PRAY. Do NOT stop. Please commit to praying for Lilah daily. Please commit to praying for her healing. Please...even if you have NEVER prayed before. Even if you think you do not now how....PLEASE.....PLEASE pray for LILAH! You will be amazed at what the Lord will provide for YOU if you trust HIM and pray. I am begging you. As a weary mother who NEEDS this....PLEASE pray for her...and for me. I need you to help me. Please do NOT give up.
I HOPE in the Lord and TRUST in HIM!
Matthew 19:26Jesus looked at them and said, "With man this is impossible, but with God all things are possible."
10 comments:
Oh Katie! I am crying, not for you, but with you...I can not even begin to fathom how hard all of this is on you and your family. I CAN and WILL continue to pray! You are all in my thoughts and prayers...PLEASE call me anytime!
Katie, I am sorry to read about your day yesterday, but I agree that you must not give up just yet.
I once experienced a day just like you did yesterday....it was the 'day of truth'....we were going to find out what to expect of Elisabeth's eyes. And they told us she would be blind forever; that her eyes would not receive sight. But Katie....they were wrong. They forgot to calculate in the power of God in all things. And now, Elisabeth does have some vision, not a lot...but enough. Enough that she can understand a little about the world around her. She can see a favorite toy when it's placed right in front of her, and most importantly, she can see the loving faces of her family. Perhaps not with the clarity with which you and I see, but with something....and that little something has been a miracle in and of itself.
So, I write this to remind you that this is most definitely not the end. It's not over. Lilah can still improve. I know this, because I experienced the exact same things that you experienced yesterday.
Continue in faith and in love. Find joy in the blessings that surround you. And most importantly, never give up hope.
-Lisa
20/400 is what my vision is with out glasses... 20/200 is the cusp of "Legal Blindness"... 20/60 is drivable in most states... I also know many who have had cornea transplants, but they did not have them till older, at least 8-12 or so... Blind spots and fuzziness are of course things you won't know till she gets older and can tell you... But I think the news is OK; I was thinking she was much worse...
Have you ever talked to the doctors at Wills Eye or the Philadelphia College of Optometry? Akron Children’s Hospital, OH also has an amazing pediatric ophthalmology department...
Katie, I know the heartbreak of children facing chronic disabling situation. It is not the same as Lilah's but it is hard in it's own way. Mental illness. I can feel very cynical sometimes when I look at all the communications gadgets out there but looking at it another way Lilah has dealt with this since she was born and will grown up dealing with it from day one. Now among all the electronic gadgets are many resources that will enable Lilah to live a close to normal life as she grows up and is exposed to them. No don't ever give up. As you are already aware, new things are coming up everyday. Maybe you can get her into a medical university with pediatric research.
QMM
Katie,
My friend, I will pray for you and Lilah. I'm sorry for how hard this is. May God use every part of this to glorify Himself and draw countless people to trust and know Him better. And may He HEAL Lilah!
Love,
Lana
Maddy is also legally blind...we knew that, expected it, but when we heard it come out of the doctor's mouth for the first time it stung and it hurt me for days upon days. I have a feeling Lilah is going to show everyone just how AWESOME she is...just like Maddy! Call me if you need anything at all! -Katie
Oh Katie, those are some stinging painful words to hear. I think you're right, that God is not done yet. This is not as far as His miracle workings go.
Do you know the song "Always" by Building 429?
The chorus is perfect:
But I believe always always
Our Savior never fails
Even when all hope is gone
God knows our pain and His promise remains
He will be with you always
My prayers continue to surround you all.
Kates,
We wil NEVER GIVE UP, NEVER GIVE UP, and we will trust in Him.
You did nothing wrong, nothing!!!
We now know what it is we are up against and we will just change directions. Our love will sustain us all through this very hard time, and we know He will lead us where we need to go.
Poppa and Cindy
Kiss the Kids for us and tell them we love them all so, so much.
Kates,
I can only imagine how difficult this is for you. I feel your pain as I read this. As you said, "I believe in miracles" and miracles DO happen! You and I both know that! Keep trusting in God, praying, and doing what you CAN. The rest is up to God! Give it to Him and allow Him to heal Lilah & you!
I am here for you and will continue to be.
Always remember how much GOD LOVES YOU & I do too! Laurie
I don't know anything about Lilah's condition. And I don't know much about faith. But I do know what it's like to be legally blind. And I DO know these doctors. Please have faith in medicine and know that Lilah is in excellent hands.
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