LIFE WITH LIVY
|6/17/2011 - Olivia's Daily Food And Medication Routine
Olivia has an extensive feeding and medication schedule. We start the morning off at 6:30 AM, 7 days a week, 365 days a year. The breakdown goes like this: 6:30 AM – Meds
7:30 AM – Food and Meds
8:30 AM – Food and Meds
10:30 AM – Food
1:30 PM – Food and Meds
4:30 PM – Food
7:30 PM – Food and Meds
8:30 PM– Food and Meds
For us, this schedule is a part of our lives regardless if we are at home, at an appointment or at a restaurant. Olivia is fed through a tube in her stomach called a MIC-KEY button. Sometimes, she gets agitated when hungry. But other than that, it is up to us to follow the schedule. She is not like a typical child who may eat a large meal and then not be hungry for a longer period of time. She is fed a certain amount from her recommended daily intake at regular intervals to ensure she has the proper nutrition. We have a half hour leeway with her medications but if we stray too far from that, it becomes a risky proposition.
Olivia visits a gastroenterologist and a nutritionist every six months. They oversee her digestion and caloric/nutritional needs. Her neurologist appointments take place every 6 months in Gainesville, FL (a 6 hour drive round trip). During those visits, we discuss her progress and her medications. Making adjustments to medications takes many months. If we are able to wean her from a particular drug, it can take as long as six months or more depending on her current levels.
Feeding by mouth is a skill that Olivia is learning slowly. Some of the things she currently can eat are yogurt, applesauce, and most pureed foods. One of her favorites is her grandmother’s chicken fricassee gravy. Basically, foods she can swallow without much chewing. That of course includes ice cream and melted chocolate, treats that most children love. We figure the enjoyment of eating is a part of life that every child should experience. Someday, we hope that Livy will be able to sit at the table and feast on a holiday meal. But until then, we are taking baby steps and enjoying what she has accomplished thus far.
LIFE WITH LIVY
|10/28/2011 - Olivia Standing In Her TeeKoz
We recently purchased a TeeKoz suit (pronouned Tee-Ko-Z) for Livy in order to help her to stand while being suspended from above. Her school has been doing this for a few weeks. Her therapist connects her to a ceiling track lift and is able to move her around the room and let her feel what it would be like to walk. At home, we attach the TeeKoz to her lift so we can replicate that feeling. Although we are not able to maneauver her throughout the house, she is at least able to put pressure on her legs and reposition them when she wants to. Our hope is that she will eventually realize that she is standing and use her own strength to hold herself up. Hailey wanted to narrate what Livy is doing in this video. She is always so good with helping her sister in any way she can. As Hailey will mention, this is the first time she was able to give Livy a big hug in an upright standing position.
Livy still has a long way to go but our end goal is to one day see her stand with very limited help. Livy is an incredibly strong little girl and is capable of so much. As parents, we try to provide her as many ways as possible to reach her full potential.
LIFE WITH LIVY
|2/27/2012 - Young Hero
There are many times in a father’s life when he is proud of his young child…when she is taking her first steps, speaking her first words, learning how to ride a bike and the list goes on. Back in November, we submitted an entry for Hailey for the Pinellas County’s School Young Hero award. We nominated her because of her dedication and devotion to her sister Olivia as well as her outstanding academic performance. She received two letters of recommendation, one from her principal and one from her kindergarten teacher. The description of the award is as follows:
“The Pinellas County Schools’ Young Heroes award program was created in 2007 as a way for the district to honor students who have overcome adversity, excelled in academics or given back to their community. These students have perseverance, strong work ethics, and are character role models. Six students are honored each school year, (one elementary, one middle and one high school, per semester). To date, the district has recognized 25 Young Heroes.”
In January, I was perhaps more proud of Hailey than I have ever been. We were contacted and told that she had won! She is the first student from her school Leila Davis to be honored with the award. My heart swelled with pride and tears filled my eyes and overflowed. Allison and I were walking on cloud nine for days.
The definition of a hero is “a person who, in the opinion of others, has heroic qualities or has performed a heroic act and is regarded as a model or ideal.” I hope and pray that Hailey continues to exhibit the amazing qualities that she has displayed thus far. I can only imagine what Olivia would say to her if she were able to speak. I envision it would go something like this:
“To my sister, my best friend, and my biggest supporter...you amaze me. You protect me, comfort me and love me like no other. You include me in all that you do and look past my disabilities. You are so proud of me and are not afraid to tell others my story.
Today, I am the one who is proud of you. You deserve this honor for having courage in dealing with a situation and lifestyle that is beyond your years yet you embrace it with dignity and grace. Your joy has helped mom and dad through the darkest of hours and your smile and laughter fill my days with beauty.
You visit me in the hospital when I am sick. You are not afraid of the medical equipment and procedures I have to go through. You console me when I am upset or in pain. When my body doesn’t work like it should, you are there to assist me. You have spent countless hours painting canvasses and creating bracelets to raise money for my therapies when you could be playing. When you go to therapy with me, you help the other kids that are there. You see them just as kids. You encourage them and give them praise.
I couldn’t do this without you. I may never be able to walk or talk, but you make me feel like I can do anything. I will always try my hardest so I can impress you. I cannot tell you that I love you, but I hope my warm glow and constant smile when you are near lets you know. You frequently tell me I am the best sister in the world. But it is I who could not imagine a better sister than you. You are my hero and I will be forever grateful and blessed to have you in my life.”
I have put this video together in honor of Hailey. There is so much that cannot be expressed unless seen first hand but I tried my best to capture her pure spirit and her remarkable character. She is our little hero in more ways than she will ever know.
LIFE WITH LIVY
|11/19/2011 - Changing Livy's Mic-Key Button
Olivia is fed through a tube which we connect to a Mic-Key button that is inserted into her stomach. A Mic-Key button is a small plastic peg with a balloon on one end and an access point on the other. The end with the balloon is inserted into the stomach and is filled with water to keep the peg in place. Food can run freely through the peg and into her stomach. She receives all her food and medications through her Mic-Key. Every three months or so, the Mic-Key Button must be changed. The video details how this is accomplished.
LIFE WITH LIVY
|6/8/2011 - The First Six Years
Olivia, along with her twin Hailey, was born on December 15th, 2004. This video depicts Olivia's first six years of life and all she has endured.