Baylee Scoliosis Warrior

My name is Melissa Smith. I am blessed to be the mother of Baylee Ann! As many know, she is our little miracle. She was born at 24 weeks weighing in at just a pound. She was in the Neonatal Intensive Care Unit for 129 days. We were so blessed to bring her and her twin sister Kaylyn home after months on ventilators, open heart surgery and much more. Baylee remained on oxygen for a year and was tube fed for 3 years. At about age 3 we were so happy that Baylee had surgery to have her feeding tube surgically removed! We so wanted her to have the opportunity to move past all of the medical treatments her life had always consisted of. Unfortunately, within months her pediatrician discovered that Baylee has Scoliosis. We were referred to Shriners Hospital and she immediately began wearing a brace 24 hours a day, and yes including bedtime. After years of that it became apparent that was not stopping her curves. The doctor then suggested a body cast. She then spent 9 months in a body cast, making for a rough summer to say the least. After the final cast was removed we were notified that had not changed her curves either. At this point her surgeon wants to perform a spinal fusion with growth rods. This would involve a very painful surgery that has very poor results. She is a poor anesthesia candidate because her extremely premature lungs have left her with chronic lung disease. Her heart surgery also left her with a paralyzed vocal cord which makes protecting her airway from aspiration very difficult. That also means if they were to cause any trauma to her one functioning vocal cord during intubation for surgery she would literally be left without a voice. This route would also include growth rod extension every few months until she stops growing. She would only grow for approximately 3 more years and then her growth would stop. At that point they would surgically remove the growth rods and place permanent rods in another spinal fusion surgery. Those of you that know Baylee know how much growth she still needs! This surgery has a 50% failure rate with the usual course resulting in numerous problems from instrument breakage, infection, curve continuation despite fusion, chronic pain with permanent disability, and the list goes on! As a mom and a nurse, my gut was sick and this didn't sound like the best option for our young 7 year old girl. Through much research I discovered The Scoliosis Academy with Janzen and Janzen Health Care in Campbell, California! I was so excited to discover their amazing results without surgery. To read the success stories of children all over the world was so encouraging. I even found out a friend of a friend had a daughter go there years ago and she has never required surgery. So, we discussed this with Baylee's pediatrician who was completely on board with surgery as the very last option. She submitted a referral to the insurance company. We were devastated when we got the denial letter. This clinic is run by three chiropractors with years of experience and expertise in this area. They have a holistic approach starting with why does she have scoliosis? She has already sent samples of hair, blood, saliva and urine. They already discovered she has Spina Biffida, which was never found before. They already have her on supplements to help her neurological system heal from the inside. They have already done X-rays and an MRI, which was never done before. They have built her a 3D brace to deal with the spinal twisting that causes much of this to worsen. She has only been offered a 2D approach by her medical team thus far. They have made her a traction chair just for her to fight gravity that just pulls on the spine causing more twisting. They took 3 weeks to dial that in for all of her specific curves, she has 3! They have discovered her nerve tension is so tight, that is probably what caused her spine to twist and curve because it was still growing when her nerves had reached their capacity. We now have a stretching plan and the doctor is building her a stretching table to help elongate those nerves so her spine can continue to grow. She has a spinal weighting regimen that will help train her core and back muscles to hold her spine straight once we get it there, so as an adult she can graduate from wearing a brace. This is an amazing team. I encourage you to look at their amazing work and success on their Scoliosis Avademy website. They care so much for these kids. After spending the last 3 weeks there with people from all over the U.S. to our new friends from New Zealand and all over the world that have come here to save their children and give them the best quality of life, I know we are doing the right thing! Our problem is this specialized therapy does not come cheap. As I am writing checks and charging our credit cards that we never use, I get scared to death going into debt over this! Don't get me wrong, we are going to appeal and appeal the insurance companies to try to get reimbursed for some of this at least! I am submitting everything from photos, X-rays, research, doctor letters and everything I can to convince them to help pay. We actually have chiropractic coverage and they denied us stating we do not. I am not nieve, and do realize this is not your average chiropractic visit. Rest assured, I am always up for a good fight. I will continue to appeal and have a friend that knows much in that area who I know will help as much as possible. Our problem is this intensive therapy is 3 hours in the home done by us and every 3 months we go back for a week to have changes made to her chair, equipment and such based on her new X-rays. We do a week of intensive therapy and return home. This will go on for years until she reaches skeletal maturity, usually around high school age to adulthood. So, being in the Bay Area hotels are not cheap, there is gas and time off work. All of this continues to add up even if insurance will reimburse us months from now for some of this. The families at the clinic mentioned this site that has been successful for families in our program to take some of the financial burden off. I started thinking about all of our friends and family we are so blessed to have! Everyone keeps asking how they can help. So many have helped watch Logan and Kaylyn, we have received gift cards and so many thoughtful messages. So, as difficult as it is to ask for help, I am going to do so for our little girl. There are absolutely no expectations! Times are tough for so many! I just thought this could help us help her and so many of you have asked to help. Even if our story just gets the word out that there are always other options! This is going to be a long, difficult road, but seeing her main curve of 67 degrees go down to 24 degrees in her new brace and 11 degrees in her chair shows me we can give her this gift through hard work! So, if you want to help I thank you from the bottom of my heart. Any little bit is appreciated! This site mentioned people often want to know how will you use this money and please know it will only be used to pay for her care in this matter or travel and lodging there. A couple of examples are her chair cost $6,000 and every week we stay down there it is about $950 just for the basic hotel. I promise it will go to good use and we will keep everyone up to date on her journey. If you can not help financially I completely understand. Just the fact that you took the time to read about Baylee's journey humbles me beyond belief. We feel so loved by all of you and thank you for supporting our small, yet brave Scoliosis Warrior!