One Child's Story with Horizontal Gaze Palsy with Progressive Scoliosis
  • Home
  • Blog
    • Blog August 2009 - March 2010
    • Blog March 2010 - NOW :)
  • The Road So Far...
  • Photos
  • Links
  • Contact
  • Vestibular Dysfunction and Scoliosis - A Theory

Today I Give Thanks

11/26/2009

0 Comments

 
Today I, of course, am thankful for all the usual gifts of family, friendship and love. But on this day, I have reflected on the journey we have taken with Makenna over these past five months, the many things that were “missed” by doctors along the way, and the place we find ourselves today. I firmly believe that we are the sum of our experiences ~ and our journey has shaped us as people and a family and has lead us to new information, new friends, wonderful support, a treatment plan with hope instead of waiting, and most importantly contacts with doctors, researchers and medical professionals who understand the frustration of our journey. All of which I am incredibly grateful for.
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
0 Comments

Day 1

11/4/2009

3 Comments

 
Did I say she would be a lot cranky? That would be putting it mildly. Yesterday as she awoke from anesthesia, we heard her screaming bloody murder. Dave reminded me that this is how she came out of anesthesia after her eye surgery. She doesn't come out well. She just gets really confused and disoriented and is mad as hell. All the nurses yesterday certainly earned their paychecks! Her way of dealing with these things is to sleep it off. So she screamed herself to exhaustion and fell asleep before we left the hospital. She slept during most of the drive back to Indy. When she woke up in the car, she was her regular self again - for the most part. It would be a big adjustment that effects all of your movements, so the crankiness and crying are to be expected.
Once we got home, she wanted to do all the things she normally does. We only had one slip... when she was following me to the kitchen. She hadn't really walked yet and I didn't really think about  it. She is top heavy now and she's have to adjust her balance. She has already adjusted to that now.
When she asked to go to bed at 6:30 last night, I thought for sure we'd be in for a long night of tears and crying. But, to my surprise, she fell asleep at 7:00 and slept through the night. She woke up at 7:30 this morning. See, she does like to sleep it off...
Her mood and temperment are better today. Yesterday, she asked me to take the "brace" off. When I told her I couldn't, she melted into tears and threw a fit. Today when I gave her the same answer she simply said (pouted), "Awww...", hung her head, stuck out her bottom lip, and walked away. So she is getting used to the idea :).
I will post some pictures later today, or tomorrow....
Thanks again to everyone for your support, thoughts and prayers.
3 Comments

Casting completed

11/3/2009

1 Comment

 
Makenna was a trooper this morning. She was cooperative and pleasant through all the pre-op routine. She was in the OR for about 45 minutes. The doctor and his nurse just came out and spoke with us. Her curve this morning was 25 degrees. They were able to get her to 0 degrees in the cast! Her spine is straight! We will keep this cast on for 8-12 weeks, take one week off between the next x-ray and cast, see what the curve is then and repeat the process. Dr. Sturm feels confident that we won't be at this for long.
So far the day has been a success. Now we are just waiting for her to wake up...I fully expect her to be a little sore and probably a lot cranky. But that's OK, we'll give her medicine for the soreness and she's allowed to  be a little cranky today! I'll post more later.
1 Comment

    Archives

    March 2010
    February 2010
    January 2010
    December 2009
    November 2009
    October 2009
    September 2009
    August 2009

    Categories

    All

    RSS Feed


Powered by Create your own unique website with customizable templates.