18 months old

Today you are 18 months old...

Thank you Lord for each and every second.

I am blessed beyond measure to have you in my life.

It is my honor and privilege to be your Mother!

Understood

Last Sunday Lilah and I had some VERY special guests come to Eli's birthday party.

Let me begin with this....

Being in Holland can be very lonely sometimes. Try as they may, people in Italy really do not get it. They want to help, and have been a great help.... They can love you, pray for you, support you, hold your hand, and be a shoulder to cry on, BUT....there is never a REAL understanding.

When our flight landed in Holland, almost 18 months ago, I was LONELY. I tried so hard to get someone...anyone...to tell me that my feelings, emotions, thoughts, fears, etc were "normal" for being in Holland. I got a lot of "it could be worse" or "she's not as bad as.." or "be happy that she isn't" or "well, you're strong, you can handle it."

What people didn't understand is that....I was dying inside. I loved my baby with ALL of my heart, and then some, but really needed to talk to someone who "got it" Who had a child JUST like Lilah. I have been SO, VERY grateful for the POSITIVE people I have found through writing this blog. I have been encouraged, made friendships, and as hard as I try... I tried to encourage them too.

Last Sunday...my loneliness......disappeared. I cleaned the house all morning. Watching the window, pacing back and forth....waiting for her to arrive...

Then, I took a break and went to my bedroom, and then............Aaron called out........ "SHE'S HERE!"

I was SO excited I didn't even let her get out of the car. (hehehehe)

I swept Lilah up in my arms and went out to greet her....

No, I didn't cry.....that is happening as I type this!!!

On their way back from vacation....Jenn and Emily and their family...stopped by to visit us!

Lilah and Emily playing in Lilah's room

Watching Lilah and Emily play together was like a dream. Really it was! To know that Lilah had someone she could play with that was "like" her was...beyond words.

Sharing lunch and a conversation

The girls shared lunch together. And when Eli opened his gifts Emily came and sat on my lap next to Lilah. God placed these girls in my lap for a reason...it was the sweetest moment. To watch these fighters...together...enjoying life...awesome!

As Eli opened his presents I held them both so close

Jenn and I talked and talked and TALKED!

It was SO nice to have someone I could ask questions and answer questions all without feeling like there was a "meaning" behind it. It was like she and I had known each other...FOREVER!

I have to admit that I did not want Jenn to leave. She and her family had only planned on staying for about an hour or so...BUT...it felt like minutes and we looked at the clock and they had been with us for over six hours. It was as if God knew exactly what I needed.

In the poem, Holland, it talks about how when you are in Holland you will "learn a new language and meet people you never would have before"

Jenn, I am SO glad that Lilah and I are in Holland with you and Emily!

In my heart I hold a VERY special place for Jenn and Emily. I pray that we can get together at least once a year...

New Jersey needs to be closer!


Thank you to the Bott Family for making a trip to the Sharp home!

AMAZING...

On Tuesday afternoon I received a call from Angel Flight that Welles had picked up our mission and would be flying us to Atlanta for Lilah's appointment.

I was thrilled because we hadn't seen him in months and this meant we would only be gone six hours verses eleven.

As I wrote in previous posts...I was at peace about this visit. I just knew Lilah's eyes were clearer...the big question was..."Did Greenberg think so, too?"

We arrived at the airport and I got a great big hug from Welles. (We also learned some sad news...keep reading)

Welles flying

Lilah asleep in my arms

Notice...she never lets go


My cousin, Mandy, picked us up at the airport and we got to meet our new cousin, Henry. We had about 40 minutes before the appointment, so we grabbed a quick lunch. Thanks Mandy ever so much for driving us to and from the appointment.

When we arrived at Greenberg's office...it was packed. Aaron and I gave our information to the receptionist and sat down. Lilah was in such a great mood. She crawled on the floor and laughed with other patients.

When we headed back to the room we told Greenberg's nurse about Lilah's improvements.
She told us that he would be right in...

When Dr.Greenberg walked in the first thing he noticed was her eyes. He said, "they look clearer from here." We said, "We think so!"
He said, "Well, let me take a look." Then he said he wanted Dr. Elliot to come in and have a look. He called Dr. Elliot in and began to tell him about Lilah's eyes and how cloudy they were before. (Dr. Elliot saw Lilah's eyes before we left the last time...I think he is a resident or new to the practice...obviously Peters Anomaly, Sclerocornea, and cloudiness of the eyes isn't common)

He asked if the nurse had put the numbing drops in, and we said, "no."

He said, "I doubt she's going to let me get her pressures, but we'll try."

He placed the drops in Lilah's eyes and reached for the tonometer. Lilah was actually giggling while he checked her pressures. He smiled and said, "18." Then he did the other eye and said, "9...let's try that again" and he did it again, "13!" Dr. Greenberg said, "wow." He smiled at us and gave us that look of, "see, she doesn't need the Trusopt." Lilah was phenomenal during the procedures!

He looked at her eyes to see if they were reflecting and sure enough, they both are. The left is most definitely, and the right has a small glimmer of red. Red is a GREAT sign! Again, Dr. Greenberg said, "wow."

He asked me if I was still patching her eye and I said yes. He asked me if we saw a difference and Aaron and I both said, "yes." He asked if she could see her food with the patch on and I said, "its better." Then he said something that gave me chills. He said, "keep patching three hours a day. I was certain we were going to lose it, but...its obvious she's seeing something out of it. The patching is saving her eye!"

He told us to stop the Trusopt(glaucoma prevention...pressure control drops) and he said, "Its time to stop the Lotemax(steroid drop to clear her eye). She can't be on it forever." Then he said that some patients see an increase in the cloudiness after stopping, so he wants me to watch her eyes closely and give a drop every few days, then once a week until we can wean her off of them.

I have never seen Dr. Greenberg this animated. This excited.

He said, "keep it up" and gave me a HIGH FIVE!

He walked out of the room and looked at his nurse, pointed back at Lilah, and said, "She is doing GREAT!"

We have NEVER given up HOPE! We pray, have faith, and hang on to HOPE each moment....
Lilah holding on to my necklace...and HOPE!


Thank you God for Lilah and her miracle!

* Aaron and I would like to thank Welles for flying us. He has become a part of our family. We learned at the beginning of our trip that his granddaughter, Stephanie, was killed in Haiti during the earthquakes. She was a missionary. She was there to help others. Aaron and I ask that you keep him and his entire family in your prayers. Welles is a very giving, compassionate man. I can only imagine how amazing Stephanie must have been. I dedicate this post, this HOPE, this encouragement to her. She gave so much to help others. She sacrificed for others. Welles told us that his family will be building a school in her name in Jamaica this summer. Stephanie, you are greatly missed*

Yes, she IS!!!

The PROOF is in the VIDEOS....

That's right...

She is getting it!!

Will she need it anymore?

The last time we went to Atlanta for Lilah's visit, Dr. Greenberg said he didn't think Lilah needed the Trusopt anymore. Her pressures are low enough that he thinks she'd be ok without them. In order for him to get a true reading of her pressures we were told to stop the Trusopt 4-5 days before we head back. So, yesterday....no Trusopt.

I am at peace about this. I know that she will be ok until Wednesday, May19th, when we return. I know that five days is not a huge amount of time.

I am very curious to see whether or not she needs the Trusopt or not. I am curious, excited, and anxious about Greenberg seeing her eyes. I believe there is a HUGE change since our last visit.

Whether or not he sees the difference....we do. I believe that Lilah is improving everyday. Lilah has come SO far in such a small period of time.

God is Good...ALL the time!

God's Eyes

The only way to explain this...

This clarity...

straight...

brilliant...

BLUE...

This is God's work.

"God didn't make these eyes right, " Dr. D said when Lilah was 18 hours old.

Dr. D...you are wrong. HE made them in HIS likeness and in HIS image.

To God and to me.....her eyes are prefect!

MORE CRAWLING!

Yes, this has become video week...But she just keeps getting stronger each day.

I want you all to see how far she crawled this morning.

I am so proud of her.

All of her hard work has paid off!

Check her out!

I am AMAZED with her progress:

Crawling and babbling at the same time!

Multi-tasking...she is totally my kid.

GO LILAH GO!

Happy Dancing

I just LOVE her to pieces!

More Exploring

I love to see Lilah move around our home more.

I love watching her learn and grow.

(please ignore the Incredibles and cat in the background)

I love exploration!

Want to see the benefits of having OT and PT in the same day each week?

Lilah has worked VERY hard!

Just LOOK at how quick and easily she transitions. She acts as if she has been doing this the entire time!

Thank God for exploration and a curious spirit.

In less than 3 weeks..

We will be heading back to Atlanta to see Dr. Greenberg.

Normally, I get very nervous before Lilah's visits. I wonder, "What will her pressures be?" and "Will he be able to get accurate readings?" and "Will she scream her head off?" and "Will he see the difference that I see?"

After realizing that these thoughts and questions are "normal", "warranted", and "OK".....I don't like that the "what ifs" creep in sometimes. I know in my heart that Lilah's eyes are clearer, straighter, focusing more, giving her the ability to "see" more than we had hoped for. I also know that no matter what happens and what is said....Lilah will always be perfect in God's eyes. I think back to the comment that Dr. D gave us when she was born, "God didn't make these eyes right."

Really? God didn't make them right?

I don't agree with that statement. I don't agree with Dr.D. I believe that the Lord knew EXACTLY what HE was doing when HE made Lilah...and her eyes.

Are her eyes "perfect" by the world's standards? no. Are her eyes cloudy? yep. Do her eyes move? yep. Do her eyes turn in sometimes? yep. Does she work hard to see what others take for granted? MOST DEFINITELY!

I am at such peace with Lilah. I am at such peace about who and what and how she is. Psalm 139:13 "For you created my inmost being; you knit me together in my mother's womb"

Do I know when or how this peace came about? no. Do I know that I still have more questions? sure. Do I know that it is OK to ask, question, and wonder? yep.

At this next appointment we will see if Lilah really needs her Trusopt. (pressure control drops) Dr. Greenberg wants us to stop the Trusopt about 3-4 days before the visit so he can get an accurate reading of her pressures without the drops. Am I a tad nervous about this part? Not really. I know that the worst that can happen is that he says she needs to stay on the Trusopt. 4 days will not make her pressures go crazy.

I believe that Dr. Greenberg will see great things this visit. Will he get all excited, like Dr. Lee does? no. That's not his personality. Now, if he does, then I will get excited!

The only way I can describe this peace is to tell you that the Lord lives in me. I feel HIS presence. I see the wonders HE has created.

Have I been scared out of my gourd before? yes. But that is OK. I am human.

Will I be scared again someday? sure. Will I stop believing that the Lord God Almighty doesn't know and see and hear it all? never.

Jeremiah 29:11