The trip to India this time has been much more difficult for me personally. Before we left last time we did not have any expectations. We did not know what a miraculous place of healing this hospital was nor the power of human embryonic stem cells. Now I know what can happen because I have seen it with my own eyes and have felt it deep in my soul. The experience here changed who I am as a person and how I view life. It gave back hope to Monica, myself, my family, and our friends.
I was so caught up in the excitement of Monica's progress last time little did I realize that she became a "poster" child on what stem cells can do for people who come here. They use her as an example of how stem cells can change your life - as they should. The second day of receiving stem cells Monica saw results in that her body started to sweat. It was a glorious day! Over the course of almost three months Monica showed progress in dramatic ways, but the most obvious was that she came home walking. She worked her ass off to be able to accomplish that goal. You look at her now and she appears "normal" because she can walk.
I arrived here not wanting to have any expectations, but I absolutely do have them. I believe so strongly and deep down to my core that we are going to have success. I absolutely believe it is possible. I believe that the power of positive thinking and visualization can create miracles in your body. However, no matter how much you pray and think positively it won't make a difference if you don't have the science to create that change. We are at that place where everything can come together.
I believe that there is a switch that needs to be turned on in Monica's body. It feels like we are close to finding it, but it is still out of reach. I will search forever till we find that switch! We can all sense there seems to be a minor disruption in her body which is causing major complications. We have seen past results which are huge, but I have become greedy and want something more every day. A little success is never enough - I want it all.
Monica has so many opportunities for improvement. The doctors base their protocol on the "changes" your body makes once it receives stem cells. How you react determines your next step in treatment. Patient feedback is imperative for the doctors. Monica is very difficult to treat because she has no feedback loop and therefore it is difficult to tell the doctors any "changes." I have to be extremely diligent in noticing every little nuance in Monica to provide feedback of changes to prove that the stem cells are working. Just as an example I am looking at whether her eyes are dilated more than normal, if she has an attitude or mood shift, if her body has an extra spasm, if her movements are a little different, etc. I hadn't noticed a change in her until two days ago.
Her "change" is that the muscles in her neck are engaged a split second longer so that she keeps her head up straighter when she closes one of her eyes. This shows that the that the stem cells are working hard in repairing and rejuvenating that area - more importantly it means that they are going to other places repairing damage in her spinal cord and brain.
As Monica posted earlier, her vision is her lifeline to the world and life itself. Her vision is double horizontally (side by side) in the right eye and she has normal vision in the left. The vision in both of her eyes is blurry and the problem is neurological which glasses cannot fix. When looking at something, Monica knows that the actual object is always on the left. Monica cannot close both her eyes, or let anyone cover her eyes, because she will collapse to the floor without putting her hands out to prevent injury. She loses all sense of proprioception (where your body is in space). If she is sitting she will slump down in the chair. If she closes just her left eye then the left side of her body collapses; if she closes the right eye then the right side of her body will collapse. She can even feel her body start to fall if she blinks too long. Monica will push you away or turn away if she senses her eyesight will be impaired. For her to be able to move her body she has to have her vision. She uses her vision to orient herself in space and make her body move. If she cannot see her feet when walking then she will fall - this is why she walks with her head down.
Dr. Shroff and Dr. Verma have been very good at listening to Monica and honoring her wish not to have a lumbar procedure. The doctors have hired two people dedicated to researching what possibly could be happening with Monica and whether there is any other person in the world like her. So far they haven't been able to find anyone in the world with symptoms like hers.
Currently, we are having Monica touch her skin and telling herself what that should feel like based on her memories. We are trying to teach her brain that the touch represents a sensation. She needs to relearn what touch means. We are approaching it like a stroke victim is taught speaking or walking.
I will not have Monica do anything that she is not comfortable with and will support her 100% in any decision she makes. She has incredible wisdom and intuition and knows what is best for her body. It is her life and she is the one that has to live with the consequences. She is a pioneer willing to push the boundaries of science and herself to get better. I am incredibly proud of her!
Keeping the faith.