"Its gonna be a little bumpy...."

Yesterday we were flown to Atlanta, again, by Welles. I have to tell you how much I really enjoy this sweet man. He donates his time, his plane, and his compassion to Angel Flight. He did so much more than all of those things for us. When we arrived in Savannah after the previous visit, he asked me when we were flying back. He said he would look out for us and try to fly us again. I told him about this website and told him that I try to update daily on Lilah's progress.

Wednesday night Aaron spoke with Welles about our flight Thursday. He told Aaron that he has been reading the blog and loves the pictures, the music, and all. So sweet!

When we arrived at Signature, Welles was talking with my father-in-law. When we walked in the door he stood up and said, "Hi Lilah." Boy did this heart melt. Lilah had already touched his heart. We talked about the flight and made our way to the plane. Aaron and I hugged his Dad and got inside. Welles told me that my buckle should fit because I was the last one to use it.

I, jokingly, but really seriously said, "I hope its loose, so maybe I've lost weight!" It wasn't.(Darn, those 10 weeks of walking at 5 am haven't done much, yet.)

The flight on the way to Atlanta was wonderful. Lilah was perfect. No tears. She laughed the entire time. She is the sweetest, most patient baby....ever.

Mommy and Lilah en route to ATL

When we got to Atlanta my cousin Mandy was there again to pick us up. This time her son, George, came too. Lilah got a chance to bond with her cousin before and after her appointment.


When we arrived at Dr. Lee's office, Aaron and I felt like we were going to receive some good news. We thought that she seemed to be improving.

We were wrong.


Normally when we arrive at his office, I nurse Lilah and put her to sleep so he can sneak the numbing drops in and try to test her as best as possible.This time she was awake and facing him. He was excited that she was looking right at him, but saw her right eye....right away.

I told him what I had seen at Dr. Cossio's (see previous post) and I was concerned about her reflexing. I told him that I thought the FML was working to clear right cornea more.

He is very concerned because her right eye is turning in and upward and moving more. The patching hasn't strengthened her eye...yet. He is concerned that we may "lose" the right eye...meaning, the brain may have shut it off because of the opacity,lack of vision, and the moving.

He examined her right eye closely. It rolled and it took a second for him to see the iris. He asked me if I thought that her right iris was smaller than the left. I said, "Yes, I have thought that all along, but was wondering if it was just me being paranoid that her left eye was bigger and had more pressure." He looked again at Lilah's right eye, and said, "The more I see her, the more I think she has Sclerocornea." (click on the word to see definition) He showed me how the edge of the iris and the white part of the eye seem to fuse together. He said that, "in hindsight I am glad I didn't do a transplant on her because Sclerocornea patients do not transplant well."

He said that he wants me to increase her patching from 1 hour a day to 2. I told him that I am concerned because after about 30 minutes of patching...I lose her. (because there really isn't much vision...if any...in that eye at all) I said that it is almost as if she is playing a game in the dark. I asked if I could patch in smaller increments and he said that there isn't scientific results either way...so go ahead. He wants me to patch her 4 times a day for 30 minutes. During those 30 minutes, I must really work her eye. Stimulate it as much as possible with lights. I said to him jokingly,"Yeah, like I have nothing better to do than sit on the floor and play with her eyes all day." He said he was impressed at all we have done with Lilah...especially having four kids. (Does he know I don't sleep?)


He said that Lilah's left eye is awesome. I asked him if we could try and increase the FML to twice a day, in the right, to see if it would help speed up the clarity...and he said yes.

We agreed that the next best option was to go ahead and put Lilah under so he can thoroughly examine her eyes. He said he wants to get a pediatric opthalmologist friend to come in with him so they can do many tests on her eyes and determine what all is going on in her eyes. I asked him if he were to guess, what did he think her acuity would be. He said that IF her retina is good, than maybe 20/40 or 20/60, but that is only if her retina is good. (Children with Lilah's condition have damage to the retinas without any warning.) I am assuming he meant in her left eye, because that is the eye she seems to have vision from.

So, in 4-6 weeks Lilah will be going to Scottish Rite Hospital in Atlanta. She will be put under lite anesthesia. She will have a very thorough exam performed by two very educated people.

All of this is...a lot to take in at once. If Lilah has Sclerocornea, she could, really, be blind and only have light perception. Lilah could never have sight from her right eye...or both.
Aaron asleep on the plane. When he's stressed...he sleeps.


Praying with Lilah.

All of this information just puts more pressure on me. I am the one who patches Lilah and stimulates her eyes. I am the one who prays as I drop each drop of FML and Trusopt in her eyes. I am the one who feels at fault. I feel as though this is the result of me not doing enough.

I think I would be handling this information a little better if it weren't for everything that is on my plate.....

• The AC in the van is still broken....Aaron will be at his Dad's, 30 minutes away, trying to fix it...again..ALL weekend. I am so tired of that piece of junk! But...at least we have no car payment.
• Alex and Sammie start school Tuesday...at different schools.more driving.But..thank God Sammie got in
• Lilah starts PT, OT,etc. at Backus Monday...thank God it is at the satellite office here in Pooler. (She is delayed due to her lack of vision. You'd be very surprised at how low vision can delay development!)
• I have to reapply for SSI for Lilah...just got the Denial letter in the mail. It stated..."she does not meet the requirements for disability as defined by Social Security." OK...just HOW disabled does she need to be?
• Cook three meals a day, loads of laundry, Drs. appointments, school starting, school shopping, clean house, be a good wife, be a good mother, be a good friend...and attempt to sleep and rest at some point.
• I must continue to teach, love, listen, and nurture all four of my children so they can become Christ followers. I do NOT know what I would do without my faith!

I know that all of this seems...trivial. I know that I sound like I am complaining...which I am not. I am just....overwhelmed. I need people to stop asking me so many questions. I need for people to stop staring at Lilah like she is a sideshow(GS). I need a break. I need some things taken off of my plate. I need to be able to play with my kids without worrying I am not doing enough to help Lilah improve. I need to be...refreshed. I am emotionally...bankrupt.

Having a child with a VI(visually impairment) is such an emotional roller coaster. There are no definitive answers. There really just isn't. It is a constant emotional roller coaster. Constant! As much as I pray for normalcy and mundane...I will not get it. At least not my idea of normalcy.

I am trying to grasp and understand that this is my new normal. Busy. Uncertain. Scary....but at the same time...I am still holding on to my faith. I am still holding on to the HOPE that Lilah will crawl, she will walk, she will talk, she will run, she will...see. I will NOT give up! NEVER!!

I want to thank Welles for the awesome flight. I want to thank Angel Flight for the opportunity. I want to thank Mandy for picking us up. I want to thank Aaron's Dad for seeing us off, and being there to listen and be so supportive! I want to thank Rebekah for taking Alex and Eli to play, and for the yummy supper. I want to thank my Mom and Bill for watching the kids. I want to thank my Mom for being there and loving me and Lilah....without judgements. I want to thank you all for the prayers. We need them now...more than ever.

Please pray that the patching and the FML increase will clear and strengthen Lilah's right eye. Please pray that Lilah will not need muscle repair surgery. Please pray that Dr. Lee will see an improvement upon our return. Please pray that the exam will show Lilah has vision, that she is NOT blind, that she has more clarity, and that all she will need is glasses....and maybe more patching. Please pray for strength for me. Please pray for peace. Please pray that I will have confidence in my abilities to help Lilah, Alex, Sammie, and Eli. Please pray that the stress will be lifted and will be replaced by Christ's joy. I pray that this pain will go away, and my feelings of guilt will be replaced with knowing I am doing all I can do...and that the Lord will help me through it all.

I thank you all for your continuous support and love. I cannot express how much it means to me!