The Beacon

Sterling Is a Champion Cherrio Chewer

Posted on May 12, 2011

By Miss Jessica, Speech-Language Pathologist

When Sterling started at The Little Light House at three years of age, he was eating soft, mashable foods or puree. For a period of time early in life, he received his nutrition through a gastrointestinal tube. He was successfully weaned from that but needed support in learning to tolerate food in his mouth. This can be typical for a child who hasn’t always eaten by mouth.

Sterling craves sensory input in his mouth. He often gets this by chewing on a chew tube just as we chew on gum. When it comes to food, however, it can be difficult to allow in new textures, tastes, and temperatures.

To start the acceptance process, we slowly encouraged new textures by providing a food he liked (pudding) and added a new texture such as crunchy Cheerios. We also played games at meal time where the unwanted food was placed first on his hand, then moved up his arm, landed on his cheek and finally rested in his mouth.

Sterling first gagged at even the sight of a crunchy solid on his plate. He now accepts many varieties and combinations of tastes, textures and temperatures. Sterling continues to work hard to chew those crunchy textures with his teeth but certainly enjoys eating. Good work, Sterling!

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My Miracle Of Life By Taylor’s Mom

Posted on March 8, 2011

Mrs. Downing?” the nurse said, as she called me to take my vitals and prepare me for one of the most exciting moments of my life… the ultrasound.

My mother, right by my side, waited patiently to see what news the ultrasound had to reveal to us. To our surprise, it was a girl! Excited as we were, I noticed that Taylor was already head first in the birth canal, which seemed a bit odd to me, but with assurance from the RN that babies tend to move around in utero, my mind was set at ease.

Off to Mathis Brothers Furniture I went, and within one hour of shopping I started having contractions. A hurried hospital visit on March 20, 2003, resulted in a 24 week delivery of the most determined, big-hearted little angel you have ever seen. During my emergency C-section, the doctor looked at me and told me what a beautiful little girl I had. Unfortunately, I would not see how beautiful Taylor was for another twelve hours.

Within minutes of delivery Taylor was rushed to the NICU weighing 1 pound 3.5 ounces and 11 inches long, with a life expectancy of 15%. She was immediately intubated, and a life-saving plan was established for optimum care. Taylor’s eyes were still fused shut, her skin was transparent and she had suffered brain bleeds on both sides of the brain. The Neonatologist explained to me all of Taylor’s diagnoses. She had Hydrocephalus, a grade 4 brain bleed on her right side, and a grade 3 brain bleed on the left (4 being the very worst). Along with seizures, Taylor had a valve in her heart that did not close and required surgery.

In more than enough words, the doctors told me that Taylor’s life expectancy was slim to none and her chances of being “normal” were not likely, so if I chose to pull the plug, they understood. As stubborn as I am anyway, this was definitely NOT an option. God gave Taylor to me for a reason, and he would be the one to make that decision to quote “pull the plug.”

So Taylor’s long five month fight in the NICU had now begun. In May, Taylor acquired Meningitis and was put in isolation. She was very ill, and the doctors told us to tell the family she wasn’t looking good and we might lose her. Miles away in Bixby, Oklahoma, my grandmother was suffering from Emphysema and wanted to come and see Taylor to hold her before her time was up. The next day my grandmother went with the Lord and Taylor started recovering from her illness. I believe to this day that my grandmother gave her life for Taylor.

After five long months in the NICU, five months filled with hurdles, Taylor finally came home. My family and I had looked into The Little Light House, and we put her on the waiting list. After almost two years our prayers were answered, and Taylor’s first day of school at The Little Light House was upon us. All of the therapists and staff members were so nice and so comforting, making sure all of Taylor’s needs were met, and that I as a mother had no reason to worry.

When Taylor first started at The Little Light House, she couldn’t walk or talk. I knew it was going to be a hard task and nothing short of a miracle for Taylor to ever do so. The staff at the Little Light House understood my wants and desires for my daughter, and they soon became a part of our family.

Taylor has grown so much in so many ways with the help of the Lord and The Little Light House. She is walking on her own; she is talking and recognizing words, letters, objects, and people. Taylor is learning manners and how to be a young lady. And anybody who knows her knows that she is definitely a character with a loving and fun personality. To be honest, I thought this day would never come. All I knew was that I had this blessing from God and it was my responsibility to make sure she had the best resources in her grasp in order to have the best life possible.

Everyone at the Little Light House is a BIG part of Taylor’s life, and always will be. It has been a long road with Botox injections to help Taylor walk, many ER visits from unexpected seizures, heart-wrenching nights watching Taylor in pain after a surgery in the hospital, and holding Taylor when she cried from fear of the hospital room knowing that something painful waits. Through all of this The Little Light House has stood by Taylor and my family. It gives you the hope we all so desire when going through trying times. The bottom line is that without The Little Light House doing God’s will, and my Mother who stands beside me through thick and thin, Taylor wouldn’t be where she is right now!

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Sterling’s Story by Sterling’s Mom

Posted on December 8, 2010

We had been married for two years when Sterling arrived early in the morning of August 8, 2004. We were expecting nothing less than the birth of a perfectly healthy baby boy. Everything with the pregnancy had been perfectly normal and we had no indication that something might be wrong. A few hours after Sterling was born, the doctor making rounds came into the room and told us something was “off” about Sterling, and they wanted to run some chromosome tests. You could have knocked us over with a feather. In an instant our carefree and comfortable emotions were stripped away and were replaced with bewilderment and fear.

The chromosome tests came back normal and, after the course of a few days, Sterling was released from the hospital into the care of his pediatrician. This is where our real journey began. He was quickly diagnosed with failure to thrive due to a poor suck reflex, resulting in a lack of weight gain. The first nine months of life were filled with doctor visits 3-4 times a week. Specialist after specialist, therapist after therapist, nutritionists, gastroenterologists, neurologists, and geneticists.

Emotionally, we were both drained and looking for a diagnosis that we knew we may never get. Our hunt for a diagnosis was never about finding out what was “wrong” with Sterling but rather to ensure that we, as parents, were providing him with the best care he needed. We didn’t want to miss something that might have made a difference had we caught it earlier.

Realizing that none of his many doctors were communicating, we came to the conclusion that the best option would be to have him admitted to Saint Francis Hospital where the doctors would be forced to come up with a plan of action. Sterling was 9 months old and barely weighed 12 pounds but none of the doctors seemed as concerned as we were. The first 48 hours were excruciating and filled with dozens of tests, wires, needles, machines, and ultimately a major surgery. The only real knowledge we gained from the medical community during these 10 days was that Sterling had suffered from severe acid reflux which led to a fundoplication and the placement of a feeding tube. It was at this point that we realized we were not in control of this unknown journey…. God was. It was also at this point that we switched from “diagnosis” mode to “care” mode. And over the next year and a half, care was what we did. We did the best we could with the resources that were available to us but we still felt that Sterling had so much potential that remained locked away inside him. This was when God handed us the most important key we have ever held in our hands….the Little Light House.

When we received the letter that the Little Light House had a spot reserved for Sterling we can honestly tell you without a sense of exaggeration that we know the feeling a parent must have when their child is accepted to an Ivy League school; we were ecstatic. When Sterling first arrived at the Little Light House he could barely walk, wasn’t feeding himself independently, and hadn’t spoken a word. With much pride, joy, and thankfulness, we can say that he is now running after his siblings, riding a tricycle with the neighborhood children, feeding himself at the table with the family, and has a 4 word vocabulary accompanied by limited sign language skills.

Even though Sterling cannot speak much, he certainly can communicate and through our observations of him, we can tell exactly what his opinion is of the Little Light House. When we pull off the highway and he realizes where he is going, Sterling gets a huge grin spanning across his face and when we ask if he is going to school we get a hearty head nod. When he sees the Little Light House logo on shirts he gives a big yell and tugs at the shirt and does his famous little “wiggle dance.”

Not only Sterling but we, as his parents, will be eternally grateful for the light that the teachers, volunteers, therapists, staff, and parents have provided, not only to Sterling, but to countless other families- past, present, and future. The most touching difference between the medical world and the faith-filled world of the Little Light House is hearing, “Bye Sterling, we love you…see you tomorrow” instead of hearing, “See you next week. Check with the nurse on your way out.”

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