Tomorrow is Cora's spinal fusion. At 8:45am they will be grafting in cadaver bones and fusing her from T-3 to L-3. Titanium rods will be placed on each side of her spine and using at least 13 screws to hold that into place. Over time, the spine will fuse with the cadaver bone and screws and make one big, happy, straight spine. Today was a check list for me: 1. Get my amazing, selfless, hart-of-gold mother here and settled as my replacement for a week. Check 2. Deliver presents and well wishes to Cora from friends and neighbors. Make her feel very special and loved. Check 3. Give kisses and hugs to all my other children as I will be gone for a week with Cora. Make them also feel very special and loved. Check 4. Quick trip to Target to pick up last minute items. Arms Reach Extending Tool anyone??? Check 5. Run Cora up to Primary's for a final blood draw and lab work. Check 6. Make sure I get out for a walk and fresh air. Check 7. Watch my amazing husband give a heartfelt Priesthood blessing to my child and myself. In our Mormon religion, we believe men can hold the Power of God and be able to give blessings to others of health and comfort. This power has been used in our family many times during moments of need and has brought health, strength and peace to us all. Check 8. Breathe Check
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So very many people over the last few days have asked me how I am feeling. And especially how Cora is feeling. The answer has been spinning around in my mind for days. I'm not quite sure how to answer that. In a way, we're excited for the surgery. To see my sweet Cora in pain daily is hard. Its hard for her to sit for long and also hard for her to stand. She get sore very quickly and is constantly shifting positions and stretching herself out. Knowing she will be "fixed" brings us excitement. Knowing that after her recouperation, she will feel so much better is very much something to look forward to. This has been looming over us for months and it will be so nice to have it over and move on. We're nervous. There is alot of unknown with this surgery. I fear I didn't ask the doctor as many questions as I should have in the times we've had together. I have a bazillion questions that the internet isn't answering and I'm afraid we won't ever know the answers until we are in that exact position. I'm very much a "planner" and don't enjoy not knowing exactly how things will be. We're humbled. So many people, even from across the country, have reached out to me and my family. Cards, emails, phone calls, and gifts have been sent for Cora. Each item, each act of love has a special meaning and holds loads of comfort and love for my family. Many, many prayers and kind thoughts have been sent our way, each with a message of love and peace. It helps tremendously. But me? I'm very confused. Honestly, am I making too big of a deal about this??? People have had this surgery for decades. Did it seriously merit starting a blog?? People tell me everything will be okay, that I need to stop worrying. Am I drawing too much attention to our family, and instead should just keep it all to ourselves? Does someone need to pull me aside and shut me up?? I hate to cause a fuss. But, a little voice in the back of my head reminds me how helpful scoliosis blogs and vlogs were to our family when we first started this journey. If I can just help one person... This week will be full of running errands, buying last minute stuff (ie, makeup wipes because she can't bend over for months to wash her face and also extra pillows to surround herself with, OTC medicines to help with side effects of major surgery and all those new books and movies to keep her busy), getting her room ready, doctors visits, waiting for Grandma's relief to come, and more time than I can measure spent on my knees. Thank you for humoring me. Thank you for your comments and well wishes. I direct them all to Cora so she can tuck them in her pocket for the hard times. 3 days until surgery... One thing you may or may not know about me is that I tend to worry. Alot. I really can't help it.
What if my car veers over the edge of the bridge into the river below??? I'd better crack a window to make an easier get-away. What if that concrete pipe rolls off the back of the semi truck in front of my van??? I'd better switch lanes to be safer. What if this chicken really isn't baked all the way through and I end up poisoning my whole family??? I'd better cook it until it's disgustingly dry and tasteless. What if an active shooter shows up at my kids school today and this is the last time I ever get to pack a lunch for them?? I'd better put a love note in it. So, here I am, worrying...about all that can go wrong in Cora's upcoming surgery. And I'm trying my hardest to focus on all the precautions the Medical Center is taking to make sure things go smoothly. I found some of these precautions facinating and thought you might be interested: They will be using "intraoperative neurophysiological monitoring. IONM is a general term used to describe testing and monitoring of the nervous system- the brain, spinal cord, and nerves-during a surgery. IONM helps the medical team understand how the nervous system is working during surgery. This knowledge can increase the safety of the surgery, lowering the chance of complications like loss of movement, feeling, or hearing. IONM is done by a specially trained technician or doctor. This provider stays with the patient throughout the surgery. The provider's job is to set up the equipmetnt, connnect it to the patient, and to monitor the IONM readings throught the surgery. Another doctor, -a specialist such as a physiatrist or neurologist provides extra oversight during IONM. This doctor will also watch the waveform data from IONM, either from within the operating room or from another location" So basically they will be hooking her up to a machine at the wrists and ankles, the scalp, the ears, the leg and arm muscles and the sacral portion of the spinal cord. Then we watch and see... Another cool fact I learned about the surgery: Cora will not need a blood transfusion because they will be "recycling" her own blood. "To recycle the blood, a machine known as a cell saver is used to collect what a patient loses during surgery, rinse away unneeded fat and tissue, and then centrifuge and seperate the red cells, which are then returned to the patient." Wow. I feel so blessed to live in a day where my daughter can receive amazing medical care, close to home, with a renowned orthopedic surgeon. I also feel so blessed she will not have to have a brace, a body cast for months or total bed rest. We are told the day after surgery, they will sit her up. Day 3 she gets into a chair, day 4 she stands and day 5 she walks. As much as I will want to crawl into that hospital bed with her and hold her tight until she heals, I know it will be in everyone's best interest if I instead hold her hand and cheer her on as she takes that first step. So for the next 8 days, my mantra will be: Let go and let God. Let your faith be bigger than your fear. Trust in the Lord with all thine heart. Repeated 100 times a day So last night, Cora danced for her last time. Well, that might be overly dramatic. The last time before her surgery and quite a while after, at least. It was a beautiful performace that she had choreographed herself with a friend, complete with periwinkle colored dresses and lots of movement and emotion. Very powerful. After the perfomance I waited in the lobby for my dancer who comes to me with tears in her eyes and pain on her face. We held each other tight in the midst of all that chaos and cried. She sobbed from her heart and deep from her soul. I could feel her pain- her knees hurt, her back hurt, but more than anything-her heart hurt. Who knows if she will want to dance again? Dr. Smith tells us she can resume normal activities 6 months after surgery. And he tells me stories of patients that have done back handsprings down his hall after their recovery. But I also know Cora won't bend the same after her surgery. I know she will certainly be moving differently. Who knows what her future holds? This is where our faith comes in to play... I do know she has danced for 12 years. She loves it. And one of the first thoughts we had when we were told about her scoliosis was that she was going to have to quit the dance team. As a Sophomore, Cora had made the high school dance team this year. Complete with competitions, traveling, matching uniforms and 4 hours a day of practice. Kinda a big deal. So I called her dance teacher, Julie, and told her what was happening. I asked if she needed to let Cora's spot on the team go so someone else could fill it. And Julie told me something that taught me a beautiful lesson, "Cora tried out and made the dance team. Fair and square. She is still on the team, even if she can't dance for the school year. We will find a purpose for her." Pretty cool, huh? I've met with all of Coras teachers. We are planning on a week's stay at Primary Childrens Hospital and 30 days of missed school. Thats ALOT of missed school. Cora is a 4.0 student and takes pride in keeping it that way. Having to not be in school will be very hard for her. Every teacher has been so helpful. Her Seminary teacher prayed with us when we told him, her ASL teacher cried with us, and her math teacher tells us with a wink, "I know how to work these things out." Cora and I both left the school knowing she had full permission to use the elevator, leave class early, have someone else carry her backpack, and even lay down on the classroom floor if she can't stand sitting just One.More.Minute. Every step of the way, I see the hand of the Lord clearing things for my girl. He is making her pathway smoother. The stumbling blocks are not removed, nor is this heavy burden being taken from her, but her steps are more sure so she won't trip, her path is being illuminated so she can see ahead, and she has her family to hold her hand so she can have strength and balance through this trial. Cora has taught her self sign language, and how to play the ukelele. She is an extremely talented actress, dancer and singer, she plays the piano beautifully and is a joy to anyone she comes in contact with. I have no doubt that whatever the future hold for her, she will accomplish it with grace, passion, and perfect posture :) My kids have always been very healthy. So, I admit, I skip back to school check ups. Unless, of course someone is due for an immunization. I know if they're growing. I know if they're gaining weight or not. I know if they need glasses. But Cora's back hurt. And her knees were hurting. So I figured a check up was in order. Routine pediatrician visit-check the weight, check the height (taller than her older sister!!), heart, lungs, ears and eyes. So I ask him to take a look at Cora's knees. Dancing at summer camp had really taken a toll on her body. She seemed to be achy and in pain alot more than usual. Dr. Knorr has her stand up and bend over (we all remember that from 7th grade scoliosis checks, yes?) Im sitting directly in his line of sight as he scans her back, and there is no mistaking the disturbed look on his face. "Im thinking Cora has scoliosis. It looks like a 20 degree curvature. You need to get this checked out!" He sends us to the hospital immediately for xrays. The hospital technician came out and asked us to call back our doctors office. He felt we had the wrong tests ordered and wanted to make sure we got a full picture of the spine. The technician comes to us and tells us we are all done and are welcome to leave...without showing us the xrays. I feel my "Mama Bear" starting to rise and ask to see the xrays. We are taken into a quiet back room and shown one of the most shocking things Ive ever seen. I snap a picture on my phone and Cora and I turn to leave. I have no idea what just happened. Cora is crying and asking questions and I have no answers. None. The next morning, first thing, I get a call from her pediatrician. "Mrs. Stalder, Im so sorry..." The 20 degree curvature we had assumed was actually and "S" curve with Cobb angles of 55 degrees and 49 degrees. He kindly gives us a phone number of a local spine specialist and wishes us the best of luck. That night I did ALOT of research. I know they say not to consult "Dr. Google" but at that point, that was all I had. I locked myself in my room to make some calls,(no one needs mom more than when shes on an important call). All signs pointed to Dr. John Smith. With rights at Primary Children's Hospital. He could see us the very next day. Dr Smith was very kind, but all business. I think after 30 years you would have to shut yourself off a bit from the emotion of operating on children and just stick to the nuts and bolts. We are told there is no bracing that would help, no therapy, no chiropractor care that can fix her back. Spinal fusion is our only option. So I'll admit, I thought of dollar signs. Can we afford a specialist? What will our insurance say? What do I do now? I had read spinal fusion for scoliosis can cost up to $500,000.00. So, I'll back track. We've had a rough year in the Stalder family. Steve had complete reconstruction of his foot and ankle in the spring, I have an older daughter with chronic daily headaches we've struggled to treat and she was also part of an accident earlier in the summer that we thought had broken her neck. Not to mention ailing parents and being sued (SUED!!)...but that's all another story. Our insurance had really been a blessing to us, but not as much as when I was told we were covered 100% for scoliosis surgery. 100%! I just broke down sobbing to the poor insurance rep on the phone. She probaby doesnt get to give good news very often. So we went home from seeing the surgeon and prayed. And cried. And hugged Cora so tight. And she prayed. And cried. And we all sat there in silence, wondering what in the world we do next. I felt as if we were the only people in the world that had ever delt with this. And then the doorbell rang. She was dressed in a flowy white dress, an older woman. Really not the type of woman you would see showing up on your doorstep to tell you how crappy your driveway looked and that she would like to give you a bid for pouring new concrete. Random, right?? I break down into tears, telling her we just received such bad news and that now wasnt a good time. And this random Concrete Angel puts her hand on my shoulder and says "Do not worry. My daughter of the same age just came throught this same thing with this same surgeon at the same hospital and she is fine. You will all be okay." So, I'll leave it at that. Little miracles. Big miracles. Lots of tears. Lots of questions. I'll continue to write, more for my benefit than yours. But hopefully, there is some sweet kid or mom out there looking for our story and I can help give them some hope. 14 days till surgery... |
AuthorMy name is Kirsty. I am the mom of an amazingly courageous daugher with scoliosis. This is our story. Archives
June 2019
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