Eye Doctor and Neurosurgeon Visits

In less than 24 hours we had two very important doctor visits for Lilah. On Wed. Feb. 9th we went back to Atlanta to see Dr. Marc Greenberg again. A few days prior Paul, from Angel Flight, called and said our mission had been picked up by two different pilots. We would fly to Atlanta with one pilot in, one plane and the return to Savannah in a different plane with a different pilot.


So, yesterday morning we boarded a plane and made our way to Atlanta. This plane was a twin engine 6 seater. Lilah and I got cozy in the back. She really liked my headset!

Then she decided she needed to look out the window before take off to make sure everything was ok.

At take off she didn't cry. She actually giggled and raised her hands in the air. WEEEEEEE!

Daddy sat up front with our pilot, Mark. Mark is a flight instructor and was very happy to learn that Aaron has his pilots license.( A gift from Aaron's Dad when Aaron was 21)

Aaron had a great view right up front! Mark talked to Aaron about his kids, his wife, his job, flying, and much more. He was a very kind man!

He told Aaron to take the wheel. Aaron was a little nervous at first because he had never flown a twin engine.( Aaron has his single engine license.) Mark gave Aaron pointers on trimming the plane and how to read the instruments in this type of aircraft. So, Aaron flew us almost the entire way there! How cool is THAT?!!

Can you tell I am really proud of my husband and love him very much?

Lilah and I sat in the way back and had a great time. She was just as happy as can be!

She had a great time checking everything out and decided it was more fun to play with my lens cap. Little stinker didn't want me to have it back!

We just laughed and played and snuggled all the way up to Atlanta.

Lilah sang most of the way!

When we got to Atlanta, Paul from Angel Flight was there to greet us at PDK. The staff members at Atlantic airport fell in LOVE with Lilah. They even gave her an awesome little toy!

We got a taxi and headed to Scottish Rite Hospital. We were the first ones in the office after lunch so they took us back right away. Dr. Greenberg came in and asked us how things were going. I told him that I have noticed changes in her eyes. I told him that I thought her right eye(the Peters eye) was more clear and that the patching was working. I said, "To me, it seems straighter, less turned in and that it works better." I told him I believe the eyes converge, work together, and work alone. I told him about the simple tests I do at home and what I notice.

He did a few tests on her eyes, and really watched her. He opened her eye lid way up on both eyes and got a great look at how they have changed. He said, "That eye seems much clearer" pointing to her right eye. Then he said, "And that left eye, it is nearly PERFECT!" (Yes, you read that right! No surgeries and she has an almost perfect eye and her right eye is clearing ON ITS OWN!! THANK YOU JESUS!!!!!!!)

Then he sat back and talked, whistled, played with toys and really studied Lilah's eyes. He said, "I think you are right. The right eye doesn't seem as turned in. The patching is working. So, I know it would seem like we would back off, but actually we do the reverse. We increase the time. So, your goal is 5 hours a day."

I said, "OK. I'm on it!"

He went on to tell us that Lilah will probably need a muscle repair surgery because her eye muscle is still probably really tight. He said that usually the patching can only do so much and we will want to help it.

(This is where my faith, and my prayer life, takes over. I know what he said, BUT, I also know what God can do. Lilah wasn't suppose to see. AND she was, at BEST, suppose to only have one eye. She now sees with BOTH eyes and hasn't had a surgery. God can do anything!)

Dr. Greenberg went on to say that we would need to do the surgery and then get some pressures, thickness tests, etc while Lilah was under anesthesia. He said that right now she fights too hard and it isn't worth it to try in house. She would need to be sedated to get a proper reading.

He also told us some possibilities for her future. He said that glaucoma is still a BIG risk for her and that she may, in the future, need to be on medications to help that. He warned us that glaucoma could still steal her vision.

He asked me what she sees when she's patched. We talked about the toys, food, crawling, walking with her walker, etc. He said that if she could see a cheerio on our table, while she is patched that that would mean her vision would be in the 20/80-20/200 range.

He said that he wouldn't be surprised if, when she speaks, that she tests near 20/80.

THAT is the third time he has said that number to us in the last 3 visits.

REALLY?!!

God is way too good!!!!(at birth she was 20/800 at best!)

So, Dr. Greenberg said, "Keep up the good work, and I will see you in 6 months!"

I called Bernadette with Angel Flight and we got a taxi and headed back to the airport.

This time we met Robert, a flight instructor from Atlanta and his student, Paul. We boarded the Saratoga to head back to Savannah.

On this flight we all sat in the back. Together as a family.

I put a patch back on her eye to keep this miracle going strong!

Aaron and I took turns snuggling Lilah the entire ride home.

And I took some really awesome photographs of the view outside my window!

Check out this next image!!!

Look closely....

Do you see the cross in the light?(no, I didn't edit it that way. THAT was all God!)

We cannot begin to thank Mark, Robert, and Angel Flight for this amazing gift they have given our family. The opportunity to fly to see Lilah's specialist, not be gone 13 hours in the car round trip, have to find sitters for our children before and after school....PRICELESS!

Today Lilah had an appointment with the neurosurgeon. We saw Dr. Wil Thompson. I had heard many stories about him. Some were not so great, some were really fantastic, but I wanted to meet him and make my own decision. I prayed long and hard about this visit and realized that today was JUST a visit. That no matter what he said, we would get a second opinion JUST to be sure. We are talking Lilah's spine here.

So, we met his NP first. She asked me ALL the history about Lilah. I filled her in on the last two years. She examined Lilah, her sacral dimple, her legs and her feet.

Then Dr. Thompson came in. He examined her legs, feet, sacral dimple, asked us MANY questions then he asked us to come in his office and review the MRI results.

He showed us several images of Lilah's spine. He showed us where Lilah has an extra vertebra. She has an L6. He showed us several things, then we discussed the brain portion of the MRI.

He told us he didn't see any true "tethering", any signs of Spina Bifida, and he didn't see any problems with the white matter in her brain. He said that in the one cross section he could see how the radiologists could say there is a volume loss, but it was because Lilah has a thin corpus callosum. He didn't see anything to worry about and he recommended that we do NOT do surgery at this time. He would like to see us back in 6 months to check Lilah's progress with PT, OT, ST, and potty training.

Aaron and I are very cautiously optimistic. We will be getting a second opinion JUST to make sure that there are no stones left un-turned.

We are VERY grateful for all the wonderful news this far.

And tuesday....

I had to make some VERY hard decisions to help benefit Lilah's future.

I made the decision to change the PT and the ST. This came with VERY much prayer, a LOT of tears(from this Mommy) but knowing what Lilah can do....I knew it was time for a change.

Being an advocate is NOT easy. Making choices for your child is hard. But, my job is not to keep friends...my job is to get Lilah the best care possible. I love these women VERY much, but at this point in Lilah's care, she needed a change.

The future is open and endless for Lilah...

and God is so very, very GOOOOOOOOOOD!