Getting a definitive diagnosis for Makenna and correcting the scoliosis is the most important thing. And we are on the right track. We are correcting the curve, and we have found the right people to diagnose Makenna. Only time will tell on the end results. We are doing everything we can, and I find comfort in that. So as strange as it may sound, I am equally grateful for every turn (both wrong and right in retrospect), every bit of misguided advice, and every heart ache. They have led us to where we are. There were so many small things and coincidences along the way, which taken alone probably wouldn’t have gotten us to the same place. They just all kind of worked together, almost snowballing as time went on. I’ve tried to summarize them here.
I am grateful that I work with people who are observant and take the time to create personal relationships with students and families. I knew I felt a curve in Makenna’s back, but you never know how much of what you think and feel is real as a parent. Maybe I was blowing it out of proportion. My co-workers all looked her over carefully, watched her move, felt her spine, and they all agreed. They felt it and saw it, too. So thank you! And Troy knew the whole story of a little girl in one of his classes who was 2 ½ and had just gotten out of a cast for scoliosis and told me her story was chronicled on the internet. And that’s how I met Tina and found out about ISOP, Mehta casting, and CAST.
I am grateful for the internet and modern technology. I know it has its problems and downsides, but it is most responsible for how proactive I have been able to be in getting Makenna the treatment she needs. I was able to not only find the information on Mehta casting, but was able to find the information on what potentially is the underlying condition for Makenna (HGPPS). I had the information on the condition before the possibility of it as a diagnosis was presented. I have found that you find more information when you have to dig for it yourself. So I feel as knowledgeable as I can be with the research that’s available. I have had contact with researchers in LA, Boston and Turkey. Certainly, I am grateful for the work that they do and the answers that work may hold for us, but I never would have found them with out a google search. In short, there is no way we would be where we are today if it weren’t for the internet.
I am grateful for the support that I have found through CAST. Again, thank you modern technology! No matter how frustrated I may feel each day, or as often as it seems I am feeling my way around in the dark; I know I am not alone. It’s frustrating as a parent to not know where to turn to help your child. With CAST, there is a wealth of information ~ either from direct experience or because most of us are the same person living the same story. I cannot thank you all enough for the amount of peace you have given me during this process.
I am grateful for Heather Hyatt Montoya and her daughter, Olivia. Heather is the sole reason Mehta casting is available in the United States. It came too late to help her little girl, but she keeps fighting, educating and pushing so that our children may benefit. There are no words for the amount of gratitude I owe them both. It also comes with a feeling of guilt that my child is benefiting from her child’s suffering. I struggle with that balance of guilt and gratitude every day.
I am grateful to the network of people I know in the medical field, so that I may pass the information about casting as an option along to them. There is only one piece of information that we were given that I cannot find a reason for or anything good that has come from it. And that was to “wait and see”. I am hoping that by passing this information on, more orthopedists will look at the RVAD and at least present casting as an option, and that more pediatricians will carefully screen for scoliosis and take aggressive action.
I am extremely grateful for the timing of everthing that has happened. Makenna’s first MRI was done when she was 5 months old. That’s been over two years ago. In hindsight it is easy to say that the neurologist should have picked up on the abnormalities present on her MRI, but I don’t know that it would have made that much of a difference. I don’t think she had a curve then. That MRI determined the sixth nerve problem and that’s it. At most, we could have been looking for the scoliosis to come. I don’t know where the EDF casting movement was at the time, but I am not sure I would have found it if the timing had been different. I also don't know if I would have crossed paths with Teresa or Jen, both who have children with the same potential diagnosis as Makenna. We make a better force as a threesome ~ our voice is louder.
Lastly, I am extremely grateful for my family. My husband has put up with all the late nights on the computer frantically searching for more information, he has been my sounding board for sorting through all the pros and cons, and he has been my rock to lean on when it all gets to be a bit too much. I can’t possible think of where I am at today without thinking of my parents. They made me who I am and gave/taught me the qualities which are making this a winning battle. My dad taught me about logic and reason which helps me weigh out good from bad information. My mom taught me the concept of ‘stick-to-it-iveness’ without which I certainly would not have found any answers. She also pounded into my head that all the challenges we face in life ‘whittle us into a fine person’. If I didn’t think I could grow stronger from adversity, I would not be up for this challenge and would do Makenna a great disservice!
And I thank anyone who had the patience to read this entire thing!!!!
Happy Thanksgiving 2009!
Makenna’s full story is chronicled at www.strengthofspirit.weebly.com