Tuesday, May 4, 2010

Meeting With The Doctors

I talked today with Dr. Shroff and Dr. Verma about Monica trying to get back her sensation. It is amazing how I am hopeful that Monica's body returns to "normal" and have a difficult time putting myself out there saying that she will out loud. I really, truly, deeply believe with all my heart, but just can't quite get myself to say, "When you feel this, or touch that, or smell this, or see that ...." I always talk about the day that it will happen - maybe tomorrow, next week, next month, next minute. I feel like she is in there and we just need to unzip her to get her out. Where is that damn zipper!

The doctors are incredible to talk with because they are positive that she will return to "normal." Dr. Verma, as Monica would say, talks in "absoluteness" not hope. He does not believe or is hopeful but is absolutely convinced that she will be normal. Dr. Shroff believes she will leave here with sensation and because Monica last time was given the expectation of being able to walk out of NuTech last time, and Monica did it, it is hard not to believe her. All of this is due to Monica working really hard, being so incredibly disciplined and determined, and having competent and capable professionals who believe that their human embryonic stem cells can make a difference. I told them that their professional compassion has allowed Monica to feel safe and have the confidence to let herself believe she will get better. What a gift.

The doctors are so convinced that I told them that they better have documented who she is and how she has gotten to this point before the sensation returns. We laughed because I said I could go back upstairs and she could have feeling right then. I just really want them to have proof of her journey to prove to the world that human embryonic stem cells work. We talked about having an independent film crew come in and film. Unfortunately it is not just what a doctor can say and therefore have it believed, you have to have outside third parties to verify evidence. You cannot use another medical doctor or test as proof because it becomes questionable even though there is no relationship. I believe, in her practice everything is subject to disbelief and questioning because it is a new scientific frontier she and her patients are creating. I have witnessed the miracle that science has created in several of the patients here and with Monica being able to walk and sweat again.
They asked me if people knew about Monica and her disease. I said I haven't been willing to go out and publicize our situation. A lot of our friends at NuTech have gone out and done newspaper articles, community outreach, etc. because they were fundraising. I haven't had the time or energy to coordinate a fundraiser yet and therefore have not publicized our story. I said I have a story, but it is still a sad story and I want to go out with the happy ending. I told them I've looked up Oprah's website and I have 1,000 words. The story we have is not the story we are ready to tell. I told them that you get my daughter back to "normal" THEN we have a huge story - walking isn't enough. Then I will write Oprah, CNN, People Magazine, write a book, etc. to tell the world about human embryonic stem cells and my girl. In one way I want to do that today to try to find someone else like her, but I much rather publicize our success and let that individual know they have hope for a cure as it cured my child.

Of course there is the "cheerleader effect" because we all want it so much, the patients are willing to do anything for it, work extremely hard at eating well, doing physio, and visualizing the changes that need to happen to heal their body. This place is inspirational when a quad is able to flex a finger that was completely lifeless days, hours, minutes before. It is inspirational when you begin to realize that you can hear what your friend is saying a little clearer and you are not leaning as close to him to understand his words because his vocal chords are stronger and his breathing is better. It is inspirational to see someone walk in a straight line for a few feet when before they could not because their balance was so bad. It is inspirational when you know a paraplegic or quad has a little more bladder control or sensation. There is a special bond that gets created in moments like that, but it goes deeper because you also want to be there when that person does not feel well, has a bad bedsore (they treat it with stem cells), or is depressed. They help you become more patient with the process and yourself. So yes there is the cheerleader effect, but incredibly dedicated hardworking patients AND science is what is making the difference in ALL of these patients. All of this is a very slow process because we do not know when or where the stem cells are going to make the difference. However, it's like a lovely birthday present when it happens.

Physio for Sensation

I am having a difficult time formatting my blogs and getting them posted. I guess I want to be more creative than the "blog" will allow me. Frustrating and I don't know Html to fix the problems I create. Therefore you are receiving posts now not how I purposely have designed them and with some grammatical errors. I get stuck and post it in a panic and then am locked out of trying to correct my errors. Since time is of the essence .... this is what you get for now. I am approaching this as something is better than nothing.
Monica has been hard at work noticing different sensations around her. She has to pay attention to what sense she is using and think about what she remembered that sensation used to be like. She is doing this in her everyday life here, but during her physio they have about ten different items they are using to try and trigger a feeling.

For instance, she holds a hot water bottle that she puts on her face, legs, arms, under her feet, on her hands, etc. and needs to concentrate on that specific area and tell herself it is hot and then try to find in her body any sensation that gives her that feeling. After she does that item she moves on to a brush and repeats all the places with concentration, then she uses something rough like the top of kitchen sponge, sharp item (she is poking her hand in the picture), cold pack (which is the blue item in the picture on her forehead), cotton ball, etc. The doctor or physio person may touch the sole of her foot, she looks at it, then looks away and tries to feel it. So far there has not been any results, but we are looking at the situation like a stroke victim and working repetitively to try and reteach the brain what sensation feels like.

Sensation for you is different than sensation for me. I do not know if the same piece of cotton material feels the same to you, like it does for me. Therefore, we want her to recreate her own "vocabulary" of sensation. Another example would be using your vision to see colors. Some people see the world black and white and cannot detect color. We do not know exactly what color red your eyes see versus what color my eyes see. To relearn colors, I would then note that that shade of color represents red and work on learning green as a new color noticing any changes. I would create a new vocabulary for color based on the different shades a color may have even though I cannot actually see the color. When Monica eats something I am trying to teach her to think about why she is eating it and does she have any sensation in her body indicating she is hungry or full. She eats a lot because she is bored. Why - I do not know the answer nor does she. She can be busy on the computer but want to eat. Before she eats she needs to recognize that she is either bored or does she really need to eat. (I always let her eat because I think her body in some way is saying it needs fuel - sometimes I have attitude because she just ate a huge dinner and it has only been one hour, but I have to believe her body knows best.) By doing these exercises we hope to trigger something, somewhere in Monica to start to begin learning sensation.

Monica just had another procedure and is resting right now. We obvisoulsy are hoping for any, any type of sensation and will let you know once it happens.

Wishing with all my heart ...