Tuesday, May 25, 2010
Monday, May 24, 2010
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.
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!
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!
Friday, May 21, 2010
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*
Tuesday, May 18, 2010
Sunday, May 16, 2010
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.
Friday, May 14, 2010
Thursday, May 13, 2010
Wednesday, May 12, 2010
Thursday, May 6, 2010
Tuesday, May 4, 2010
Monday, May 3, 2010
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.