Makenna's third birthday is quickly approaching. And as she shows her true 3 year old colors with lots of "No's" and plenty of "why's", I am still amazed by her ability to adapt to her circumstances and am overwhelmingly sad that I cannot give her the one thing I would love to for her birthday. I want to be able to fix this, and just make it go away. I want her to be able to take a bath when she wants to, to play in the water, to roll over on the floor without struggling, to curl up in bed, and to not have this scoliosis looming over her head. She amazes me because none of this bothers her. She stopped asking for a bath, she has adapted to her limitations in mobility, she sleeps fine at night, and she has no idea that what she is going through is abnormal.
So I continue to give thanks for Makenna's wonderful disposition, despite the emerging three year old behavior!
This new cast is incredible tight. Not that it's showing any signs of skin breakdown or anything like that, but I cannot imagine it lasting another 9 weeks. I have spoken with her Dr and am on the lookout for certain signs that the cast is too tight, but so far we are good. It is very snug and has a great 'shape' to it! She has a waist again :) I've spoken to a few other cast parents who have had a cast like this... with the figure... and they said it was the cast they got the most correction in. So, keep your fingers crossed on that one!!!

Makenna has an appointment at Children's Hospital in Boston on February 1st. This is the same hospital where she is enrolled in the research study. You can link to their website here: Engle Laboratory. The Laboratory studyies Congenital Cranial Dysinnervation Disorders (CCDD's). HGPPS is one of these disorders. The research team has been a great source of information ,support and comfort during the last several months. I am excited to meet them and have them assess Makenna.
Makenna will have a full neurological evaluation as well as an ophtalmologic assessment.
What I am most looking forward to, however, is meeting the other two children I have found along this journey. There are two little boys with similar stories and histories as Makenna. We will all be seen on the same day at Children's Hospital!
I am hoping that the doctors will be able to offer insight and confirm a diagnosis. But I think it will be just as interesting and helpful to have three moms sit down and compare notes on the road we've traveled.

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

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.

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.

Our initial consultaion was yesterday, 10/30. It went very well.
You know how when you think of something enough, you have a vision in your head of what it will be like? Well, this was nothing like what I had imagined. In my mind, based on the knowledge that Shriner's is a free hospital and on some reports I had gotten from other people, I was imagining a very large hospital, mostly white and stark. Kind of chaotic, crowded, disorganized... Well, it couldn't have been more different. Shriner's in Chicago is a very small hospital - two stories; but only one is visible from street level. Dave and I drove right by it! There were about 5 cars in the parking lot. I was sure we'd be greeted by someone at an information booth who didn't know why we were there and wasn't really helpful. Instead, we were greeted at the door by two nurses who wanted us to sanitize our hands and interogated us about the health of our family in the last 7 days - Thank you, H1N1! The lobby was bright, clean and very quiet.
They did new x-rays. Her curve had not progressed, but the doctor was convinced it was because we had her in the brace. In hindsight, we should have kept her out of the brace for the past week so they could get an accurate idea of what's going on. We will keep her out of the brace until Tuesday, and they will do one more film just to see the true starting point.
Although her curve hadn't progressed, he was very concerned about an angle he referred to as the "Mehta angle". It's my understanding that he was looking at the outside height of her ribs - as compared to one another. Apparently, this is angle is predictive of a progressive curve. Makenna's was pretty high, so he felt like casting would indeed be the best option right now. So, they scheduled us for Tuesday. We will arrive at the hospital at 6 am and wait for her turn. She is the fourth cast that day. She will be under anesthesia, so she will need to recover and do the normal eating, drinking, and peeing before we are allowed to leave.
I have been in contact with several moms who have already been through this, and they have given me great advice on what to expect and things to stock up on. I feel blessed to have found that resource. I have also talked with another mom whose son will be casted that day as well. He is on his 3rd or 4th cast, so she's a pro and will be there the whole morning to guide me through it.
I do understand that the relief I feel will only be followed by new challenges and different adversities, but we will adapt as we always have. I've said it before, and I firmly believe it - kids are resilient and kids who have struggles are blessed with an amazing spirit. I know Makenna will struggle, but I also know she will cope and handle the change much better than I will. I just have to keep reminding myself of that, so that I can copy some of her strength. Dave and I have already discussed that no matter how hard it is for us to watch her adjust to the cast, it is so important that we not show her our concerns, or sorrow, or frustration.
We also discussed with the doctor and must acknowledge, that the research and results have only been documented on kids with plain idiopathic infantile scoliosis. The fact that Makenna may have an underlying genetic condition causing the scoliosis, makes it hit or miss. There is not guarantee that it will work as well as the data shows on the other kids. But it could work. And that's the hope we hold on to. We have to.
Thank you all for your love and support along the way.