LILY A Story in Pictures
Susanna Grace was born July 2, 1999. Susanna means "A Lily." Susie is quite literally "A Lily of Grace." Susie, dubbed "Miracle Baby," is a blessing to us and an inspiration to many.
1. August 6, 1999 Susie is in the PICU, Children's Hospital, hooked up to a "vent" (respirator), bloated with IV fluids and trussed up like a chicken. We will never forget the pitiful look in her eyes. It clearly speaks, "Please help me." Susie is five weeks old. She will spend the majority of her first two months in the hospital. Finally, she is diagnosed with panhypopituitarism and given medication.
2.3.4. September-November 1999 Home with her family. We see the GRACE of God. Grace is God's favor, undeserved by mankind. Susie is able to drink thin liquids and even breastfeed, after two months of tube feedings, aspiration, and formula thickened with rice cereal. Susie has a trach, and is hooked up to a blue tube that provides cool mist. (She was given the trach before the panhypopituitarism (and later Septo-Optic Dysplasia) diagnosis.) However, she no longer needs extra oxygen.
5. November, 1999: Susie at home, working on her Christmas wish list.
December, 1999 All seems lost as we are told Susie's upper airway has become totally obstructed. Susie is abruptly scheduled for broncoscopy, and as an afterthought, possible "decanulation?" (trach removal). We are totally surprised, as doctors seem to think she is far from ready to get rid of the trach, and that her laryngomalacia is "probably worse." In spite of all negative odds, trach is successfully removed. We are so glad the doctors gave it a try! She is still considered medically fragile, but is able to make it without the trach. We were told almost NO ONE is able to get rid of a trach before one year of age. Susie is five months old and weighs ten pounds, eight ounces.
Sorry, we didn't think to take any pictures in the hospital. It all happened so fast!
Less than a week after the trach is removed, Susie discovers her voice! She begins to imitate sounds, like "Hi," "Uhuh," and "Lori." We'll have to watch what we say to Susie, if we want her to learn good grammar.
Susie Cruisin' at age One! Happy Birthday, "Miracle Baby!"
Thanksgiving, 2000: Susie alternates between frequent chattering, with a new word practically every day, to periods of quiet, without talking for weeks. Susie's been cruising for months, and taking a few steps. She began walking in earnest at sixteen months, following her sister and brother around the house. What a wonderful gift!
Update, Christmas 2004: Susie is 5, and loves playing nurse, tea shop, and house. She’s doing homeschool Kindergarten work this year, and is starting to read and write a little. We continue to be thankful for prayers for Susie. If you want to read about some of Susie's health challenges, here's information about Septo-Optic Dysplasia, http://www.focusfamilies.org/focus/ .
Update, October 2005: Susie talks in complete sentences and paragraphs, but articulation is still a problem. We’re Homeschooling first grade, though the grace of the Lord and the help of many friends and family. Since she was two, she has said she wants to be a nurse when she grows up. She’s learning to play chess, and enjoys playing with Polly dolls. She loves people, music, movies (including “Over the Hedge”) and posing for the camera.
Here’s our “Miracle Baby,” posing for the camera at age six. She's still medically fragile, because of adrenal insufficiency, and she copes well with her significant visual and speech challenges.
Many people have called her “Miracle Baby,” and even her doctor has said, “She’s a miracle!”
Thank you Jesus, and thank you family and friends, for all of your prayers. We are also thankful that Susie's life has touched so many hearts all over the world.
As of this writing (2009), Susie is nine years old. Susie composed the following essay, "My Wish Trip," using all her own words, and typed it into the computer herself. Her mom helped only with spelling and minor grammatical suggestions. Susie, you've come a long way, "Miracle Baby!"
My Wish Trip
March 3-10, 2009
I have to take pills because my pituitary doesn't work and shots to make me grow. My Mom wrote Make A Wish. I told them I want to see cowboys and Indians, ride a train, and see John. John is my big brother. He is a U.S. Army policeman in Germany.
We learned about cowboys at Cornerstone Co-op where I went to school on Tuesdays. On the other days I do school at home.
Make a Wish made a Wish party for me. I invited my friends from Co-op and my cowboy class teacher. We played "Place the Star on the Cowboy." We also played with a lasso. The cake looked like a horse head.
On Tuesday, someone picked us up in a limo to take us to the airport. We went through Security, and checked our luggage. We walked on a walkway to get on the airplane. We found our place and sat down. We put on our seatbelt and the airplane moved from the gate. We went down the runway slowly then it started to go really fast. Then we took off. Then it flew higher. Then you can't see anything but clouds.
Our plane landed in Georgia. We got off and went in to the airport. We waited for the other airplane to take us to Vegas. Our other airplane came and we walked onto the plane. We found our place, sat down and put on our seatbelts. It went down the runway slowly, then it started to go very, very fast, then it took off. We landed in Vegas.
We got off our plane, went in to the airport, and then we got our luggage back. We had to ride on a bus to get to the car rental place.
Daddy drove us to the Stage coach Trails Ranch in Arizona. I think it was after 10 when we got there. Carrie came out to show us around the ranch. She told us "Breakfast is at 9:00 and they ring the bell for lunch at 1:00 and dinner at 7:00."
We went to eat breakfast on the day after we got there, Wednesday. Then we went horse riding at 10:00. But that time I didn't want to ride a horse. Carrie came out. Mom got off her horse. Randy picked me up. Carrie sat behind me and held me on the horse.
The next day, Thursday, after 9:00 breakfast, at 10:00 I got on the horse myself. Carrie was still sitting behind. The cowboy asked if we wanted to ride around the corral. We did. I was just scared a little bit. At 4:00 I rode that horse by myself in the corral. The cowboy was holding the reins and walking Diesel the horse around the corral. Do you know why I didn't want to get up on that horse at first? He was big!
The next day, Friday, we had to take my big brother to the airport. I was happy he got to be on my trip, but I was sad he left.
Cowboys sang songs on Friday. The cowboys were being funny; ridings stick horses around the lodge. Then a little boy got his stick horse too and rode around the room.
On Saturday, after 9:00 breakfast, at 10:00, a cowboy, Jef, picked me up on the horse, Diesel. Jef guided the horse to where Mom, Dad
and Lori were. Then the leader led us through the gate and on to the trail. I rode Diesel again on the trail at 4:00 but somebody still picked me up. Diesel ate a little bit. The cowboy pulled on the reins, and said," Come on Diesel!"
When we had to go back to the ranch we went down hill. We got back on the path, and through the gate, down the path to the corral, and then someone picked me up off the horse. After that, we watched TV in the lodge with a boy named Ian. Later, we had a horseshoe tournament, and a bonfire. Sunday we had breakfast at 9:00, then took pictures and said "Goodbye" to all the people at Stagecoach Trails. We also drove to the corral and said "Goodbye Diesel."
We drove to the Grand Canyon Hotel. I got a fake hotel key and a train whistle. We bought our tickets for the train, and went to supper at the Depot Restaurant.
Next morning, Monday, we ate breakfast at the Depot. It was raining and snowing. We watched a little bit of the gunfight. We waited outside the train, and then a train worker opened the door and put a yellow stool there. We gave our ticket to the train worker. We got on the train and sat down. I liked the singing cowboy on the train.
Our train stopped at the Grand Canyon rim. Then we got off. Daddy went close to the rim taking pictures, and his hat blew away down into the canyon. I'll bet a mule is wearing his hat.
On our way back to the hotel our guide was funny. She said, "If you liked the train ride my name is Amber Rose. If you didn't like it, my name is Stephanie."
A fake gang robbed the train. We put our hands up and screamed. The sheriff was picking up a box of donuts in that other car. The sheriff said, "I pistol whipped them off the train." Then the sheriff gave me one of his bullets! (They were blanks.)
Our train stopped at the Depot and we went back into the hotel. Next morning, Tuesday, we had to pack, and throw our stuff in the car to go home. We ate breakfast, and then Daddy drove us back to drop the car off. We rode the shuttle to the airport. I liked the plane ride home; I'm glad that I got to see cowboys and my big brother!
Susie riding Diesel the horse.
Thanks you http://www.makeawishohio.org/ !
Luke 8:2,3 "...and certain women who had been healed of evil spirits and infirmities...and SUSANNA, and many others who provided for Him from their substance."
Song of Solomon 2:1-2 Prophetic of Jesus: "I am the rose of Sharon and the LILY of the valley."
Ephesian 2:8,9 "For by GRACE you have been saved through faith, and that not of yourselves; it is the gift of God, not of works, lest anyone should boast."
Do you need help with an illness or trial? Find encouragement at http://www.eaglesnesthome.com/words.htm
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