Olivia
Let me introduce myself: My name is Olivia France’s O’Hara. I’m the precious daughter of my parents Francette and Tim O’Hara. I also have a brother named Max.
I was born a little earlier then planned. I arrived October 10, 2000. I was at 26 weeks gestation and weighed 1 pound 12 ounces and measured 14 inches in length. I spent the first 4-month in the hospital NICU and was treated for BPD (Bronchial Pulmonary Displacia) but for the most part I was progressing normally. I was sent home with my oxygen and a few medications but nothing like what was about to follow.
Within days of arriving home I was order back to the hospital by my pediatrician, where I was admitted to the PICU, because I had labor breathing. I was finally introduced to multiple breathing treatments, that worked good and I was sent home. I then received my immunization and developed a rare neurotically seizure disorder that further compromised my limited lung capacity. The seizure disorder was finally under control after trying multiple medications but not after being rushed either via ambulance or air lifted multiple times. My upper left lung would hyper inflate and block the remaining right side and I would go into distress or stop breathing altogether. I then developed a secondary seizure disorder, were I was having up to 175 seizures per day. This is when it was suggested that the top tier one hospital do some further testing. So off to Cleveland Clinic, my family and I went. Only to find out that I should not expect to live past three years old. We could not stop the seizure, so the dying (atrophy) of the brain would continue. At the time surgery was not a viable option because there was not a focal point.
My parents talked and cried all the way home about what they could do for me. Finally my mom suggested that they lift me up to God when we get back. So that is what they did and you know what, the seizure stopped within one month. All medication has since been removed and I been seizure free since. I know there was a Guardian Angel near me the whole time.
I need a tremendous amount physical, occopupational and speech therapy. I currently communicate visually and with my adaptive equipment. I try hard and learning to make sounds so I will be able to express my feeling vocally. I work on many words and can say mom and hi. I’m very cognitive with my environment I just can’t get my body to do what I want. The Doctors tell me that was the main part of the brain that was affected. I’m currently working hard to hold my head up and control my trunk. I like to walk with my walker and enjoy standing in my prone stander and playing video games and watching movies. I’m stilling learning to eat orally and I take about 70% orally by mouth. My parents and nurses supplement the rest trough my G-Tube.
I currently attend Bovenchian intermediate school and really enjoy it but I think I’m ready to move on to a Poe hi class. I also attend an intense therapy program called conductive education that is a lot of work and I’m usually really tired but my good friend Sarah is in the same class. I also go through Suit Therapy which is an intense 4-hour a day work out for three weeks to help develop my muscles. I only do this about four times a year.
But since I started the suit therapy and along with the recent hip surgery I can now roll over by myself. Which really scares my Mom and Dad but it is fun being independent.
Some of the therapies and special equipment is covered by insurance, but most is not. I want to continue with suit therapy, go to a specialty-feeding clinic, and get a therapy cage for my home and any other important equipment that will assist me in having a better life.
I love people and interacting with others. I would like to leave with my thoughts. Many people touch our lives. But only a few leave that special feeling in our hearts, which last forever. My parents and I would like to thank you for all your support, love and prayers. This comes from the heart that started as the tiniest, but now is the biggest of all.
Your friend,
Olivia O’Hara
