The 1st inning...rewind

And so it began...  

  At about 9 months of age, I started noticing that one side of Hunter's back looked like the musculature was stronger on one side than the other. I asked my sister, Aunt Cara is our resident pediatric occupational therapist, and she gave me a few things to implement and suggested that we continue to watch him and then refer to our pediatrician. At his one year appointment, our pediatrician didn't say that anything was out of the ordinary, so I pointed the curvature out to him. He immediately asked me to take Hunter upstairs to get an x-ray. He called me later that afternoon and said that he hadn't seen a child this young with scoliosis and referred me to an orthopedic. Then began the whirlwind. We met with an orthopedic soon thereafter, and were immediately told, without a complete examination mind you, that Hunter would never be able to play sports or do anything active. 
Um..hello! Don't decide our child's fate without a thorough examination or even knowing his fighting personality. Never mind the fact that if you look up the word "active" in the dictionary, that I'm pretty sure his picture is next to the definition.    The ortho ordered an MRI and said he wanted to sit, wait, and watch for 3 months to see how much the curve progressed. We were scheduled to reconvene at the beginning of January. I'm not an orthopedic, but I would think if you know it's progressing, you wouldn't wait to see how much it is progressing. That was of course, before I know what I know now. If you have a feeling in your heart and your gut, then listen.We completed the MRI about a week later, which in and of itself was a hard experience having your little undergo anesthesia for the first time. Thank God that our brother-in-law, Roger, is an anesthesiologist and was able to explain everything to me prior to and after the MRI. He has a gift for calming nerves and easing anxiety by logical explanation. So, when they walked me back in the MRI room and they explained that Hunter may act like he's suffocating and his eyes might roll back in his head, I was able to shake my head with confidence that I understood that it would be okay. Roger was right, it was probably harder on this Momma that it was on our little man.  The MRI revealed that his spinal cord was tethered and that you had several syrinx or cysts within the spinal cord. We were told that the syrinx were fairly common, but the tethered cord would have to be dealt with. Normally, the spinal cord hangs loose and is able to move freely with growth, but his was pulled taut. I believe that the spinal cord of most individuals extends to end between the L1/L2 vertebrae and Hunter's extended to the L4 vertebrae, so it was pulled abnormally low. We were then referred to a neurosurgeon, whose first available appointment was about six weeks after his MRI.    Sit and wait, sit and wait. 
I've decided, waiting is for the birds!  
Needless to say, Mama Bear came out and frantically started researching and looking for answers. In searching, my mom and I both came across a website for the Infantile Scoliosis Outreach Program (ISOP) and I found myself engrossed in all of the personal stories on their website. I reached out and called ISOP hoping that they could help me find some answers. That was the best phone call that I have made throughout this journey. Heather Montoya, the founder of ISOP, patiently listened and solidified my fear that waiting was NOT the answer. She asked for Hunter's information, x-rays, and a picture of our baby. She then took our info and spoke with the chief of staff at Texas Scottish Rite Hospital, because they are the best fit for this condition. Shortly thereafter, Heather worked her magic and we received a call from Scottish Rite. We were told that Hunter needed to address the tethered cord issue before he could go through the admittance procedure for Scottish Rite. 

This is the picture that I sent Heather at ISOP and it was taken at the end of October 2013. Hunter is actually standing straight or straight for him anyway, while holding onto the coffee table. As you can see, the curve of his spine is very pronounced and has gotten much worse since then.
   December 17th came, and we met with the neurosurgeon, whom we adore and would love him to be Hunter's primary doctor. He has a wonderful bedside manner and great sense of humor. He was very matter of fact and told us that Hunter would have to have surgery sooner, rather than later, to release the tethered cord. James jokingly said, "We're available tomorrow", to which we were told that the surgery would actually very likely take place before the 1st of the year, especially since there were a lot of cancellations due to sickness. We received a call two days later on December 19th that he was scheduled for surgery on December 23rd and would be in the hospital until December 25th. 
Sit and wait, sit and wait, sprint! 
We were so thankful that the neurosurgeon was proactive and was able to get him in.   The surgery was stressful for Momma and Daddy, but very successful for Hunter. We stayed in the hospital from December 23rd through about noon on Christmas Day. "I love you Da"
Pre-surgery..."What have you people gotten me into?"
Directly after surgery..my sleeping angel.
Flirting with all the nurses in true Hunter form.
   I kept in contact with the nurse from Scottish Rite and as soon as Hunter was released after surgery we started moving forward with the paperwork for Scottish Rite. We were accepted into the Scottish Rite program and were assigned a consultation date of February 19th.   We still had our appointment with our orthopedic in Houston at the beginning of January, so James and I discussed and decided to keep the appointment to see what he had to say.  I'm an educator and coach at heart and am married to an engineer, so it's our nature to research and prepare. By this juncture, I had joined a Facebook group for parents of early onset scoliosis, and was completely engrossed in every aspect of this new found road that we were traveling. The great thing about internet research is that you have so much information at your fingertips, but the drawback is that I probably know just enough to be dangerous.   James and I went to our orthopedic appointment at the beginning of January armed with knowledge and I was ready to strike. I knew in my gut that we weren't supposed to be treated there, but felt as though I should peruse every inch to make certain we were on the right path for Hunter. I walked into the office with skepticism and left fuming. James asked if I wanted to be mad at him, but the truth is that I just wanted to be mad. Mad at the fact that, while I'm not a doctor/orthopedic, I know that our orthopedic hadn't done his homework. It is black and white to me. You can't profess and implement a philosophy and not believe in it and all of its parts. As a parent to a little man that can't yet speak for himself, I have to question and challenge, and honestly he didn't meet the grade. In parent/coach conferences, I used to always reassure every athlete's parents that they were their child's greatest advocate. That sentiment has never hit home more to me than it does now.  Luckily Scottish Rite was in the horizon and we are now onto bigger and better things. The lesson, advocate for your children and what you believe in. Don't settle for what someone tells you, research and learn the answer for yourself and challenge what you feel isn't right. Most importantly fight and listen to your heart.