Please read Novas story and go like her page! Super Nova!! When nova was four months old, we got the phone call. on a Saturday night, from an endocrinologist, asking us if we had a minute to sit down and talk. My world was flipped upside down when she told me more than half of my childs brain hadnt developed during pregnancy. Born without a pituitary gland, legally blind, and with a large unilateral cleft consisting of almost the whole right side of her brain. She would never sit, walk, talk, and she would most likely suffer from epilepsy. She would have to take growth hormone shots every night in her stomach back and legs, she would have to take thyroid pills and steroids to keep her alive, and while there was a chance she wouldnt have seizures, they were more likely to happen than not. We had no time to grieve- at that moment, our lives transformed into a never ending battle to make sure our daughter would live. we had to drop what we were doing and take nova to the childrens hospital first thing the following week. We dove head first into uncharted territory. They didnt tell you about any of this in the what to expect when youre expecting books, and when you were growing up, this wasnt something they teach you in school. You had to learn to follow your instinct and be your childs voice- and you had to learn that very quickly. I was 18, and Novas dad was 20, and we found ourselves making decisions and living a life we never imagined we would ever have. We were in the hospital so much we might as well have lived there. Our daughter was in the spotlight of the ICU, and it seemed like every doctor in the hospital wanted to take a look at her. When your child has a rare diagnosis, they can be treated like a guinea pig, or some sort of doll in a display case. We had to give our daughter endless cocktails of pills and tube feeds, watched her get poked all hours of the night, put under sedation time and time again, and just when you thought youd get to spend a week at home with her and adjust to life outside of the hospital, you were right back in again. Schizencephaly reared its ugly head day in and day out. But we hadnt seen the worst of it. when nova turned five months old, when her dad was giving her a bath, she had her first seizure. The first of many. For the next two years, on top of all of her other medical complications, she would suffer from endless seizures of all kinds. She spent many of those days in status epilepticus. Status means that you are in a constant seizure and this is extremely life threatening. If she wasnt in status, the breaks from having a seizure were few and far in between. If there was ever a moment I got to see her smile, it was so short lived that it was becoming a challenge to remember what it was like to ever see my daughter happy. Her team of doctors wasted no time prescribing seizure med after seizure med. Valium, onfi, zonogran, Sabril, keppra... Medicine stacked on medicine that would fail to control her seizures, but would subject her to paralyzing side effects, ranging from dizziness to trouble breathing to having to take her to the hospital again because she was completely unresponsive and any effort to wake her up had failed. Most days my daughter was so limp and lifeless that I would question how she could ever have a quality of life because of the constant seizures and the side effects from these poisons on top of that. We had many MRI and EEG scans, showing that the right posterior of her brain was firing 24/7 and her cleft was a playground for seizures. After trying every seizure treatment available, the neurologist came to us to let us know she was a good candidate for brain surgery. The plan was to spilt her corpus colossum, and preform a leisonectomy, to remove most of what brain she had left. In the end she would be left with anywhere from 5 to 10 percent of a brain. The surgery was also not guaranteed to work, and it was a very extreme procedure that the neurologist would not tread on lightly. They Gave me the news that there was a chance novaleigh would not come out of the operating room alive. I agreed to the surgery very reluctantly... And we were sent home to wait for a spot to open for nova to get a MEG scan in Houston to prepare for the surgery. I packed a bag and once a spot opened for the scan we would fly south to the childrens hospital there, and the surgery would follow shortly after. But while sitting in my bed on Friday while nova slept, I broke down. Cried quietly so she couldnt hear, and called her dad to come have a talk face to face. I told him I was packing up all of our things and we were moving to Colorado. We had to try cannabis oil first. You heard the stories everywhere, on the news and on the internet. Parents claiming that their children were saved from oil made from cannabis plants. To some it sounded far fetched. Some didnt believe we would actually have the guts to go. But more people had our backs completely, and supported our decision ten fold. We packed our house, put nova in her car seat, and we left our home in Austin Texas, the place we had lived our entire lives and swore we would never leave. We left our families, had to break our leases, and say goodbye to the place we were born and where we grew up, the only place we ever knew. But Colorado welcomed our family with open arms... And has been treating us rather nicely. So now it is October, and novaleigh has been on cannabis oil for five months. I want to clarify something, my daughter is NOT taking charlottes web. She is not taking oil made from a strain that is CBD only. She is taking an oil made from a strain of cannabis called grape crush, and this strain is an indica, with a high thc content and a low CBD content. Yes, my daughter experiences the phsycoactive effects of cannabis. Does this worry me? Absolutely not. My daughter has expirenced a 99 percent reduction in seizures. She is down to one seizure every couple of days. She is happy, she is sitting up, she is trying to STAND up, she is saying mama , and she even looks up at me with her big blue eyes. She will look at me, smile and say mama. And that is a gift that gives me a feeling I will never be able to describe. She is off of three of her anti epileptics already, and we are working on weaning her off of a fourth one in the coming month. No more zonogran, no more keppra, and no more Valium. We have not used any of them for over four months now. Nova has been off of her growth hormone injections for five months now and she is growing at a very healthy rate for her age- she is even a little high up on the growth charts! At three years old she is wearing a size 5t. No more nightly shots. Since her seizures are gone she is learning to play. Her favorite things to do are practice standing with her daddy, getting dressed, playing with her rattle, and dancing while I hold her upright in my arms. She also likes to have long talks- babbling at me with such a happy tone and disposition that you cant help but to laugh from the warm feeling in your chest. I finally know who she is because of her cannabis oil. She is a spunky, fun, happy little toddler full of energy and love and light and when you look at her now, you would never be able to imagine the horrible things she used to endure everyday... A constant nightmare that we called our lives. She just turned three- because of cannabis oil. She has a long life ahead of her, and we have big dreams for her. This is something that should be available to all children- and my child is living proof that cannabis oil DOES work. Better than anything I could have expected. We have not been in the hospital one time since starting cannabis oil. Not once. Our lives have been changed forever, and every other child that is suffering so unfairly deserves nothing but the same. I hope that Novas story can somehow make a difference- but even if it only motivates one parent to try this wonderful medicine for their child, I will have done my job. Cannabis oil is how to save a life.
Posted on: Sat, 25 Oct 2014 12:35:45 +0000
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