Monica's India Adventure

Migraine

2010-05-14T08:35:00.000-07:00

I haven't written in ten days because I have a migraine. For those of you who have ever had one you know what I am talking about; for those of you who have never had one you have no clue how it impacts your daily life. You just can't shake it or wish it away. If you are paying attention you may pick up the subtle clues that it is coming on. Personally, I don't pay close enough attention to the warning signs because all of a sudden I will realize that my behavior has changed and then I am past the point of recovery.

The first sign that I am protecting myself is when I start to wear ear plugs. I become sound sensitive. I will try to protect one side of my brain from the world assault of noise. I don't realize it but I will stand with one ear against a wall to buffer the noise. Then I will tilt my head and pull my shoulder up to close the gap when sound has a chance to enter. Then I start to put my finger in my ear. I then always reposition where I stand in the room if it is too loud. I then distance myself from anything or anyone that is loud. Then I find that I start to tear a napkin and put it in my ear. Then I start to carry real ear plugs with me and always have one in my ear. When I still feel decent I make an effort to hide the ear plugs .... then I don't care who sees them and you know I turned the corner.

The next sign is that my eyes get sensitive to light - all light. It again starts slowly and I don't realize that I am compromising my life. I notice that I am sitting somewhere where I am usually comfortable and now I am noticing one florescent light in the room. At first I just tilt my head down further so the top of my head covers the light. Then you notice that you arrange yourself so that the light is blocked by other objects. I sit in a chair and put myself at an angle to block a light. My back is always to the light. I start asking people to turn off a light. For a while I am careful with all florescent lights. They drain me, but I am good with natural light. Sunglasses are a must. Then all lights start to bother me. Then sunlight bothers me. You stop using the computer. You make all these decisions to shrink your world all the time and don't even know you are doing it. Then you realize that you need a dark room and NO light can come through the window. When you start to wear a washcloth over your eyes in the really dark room - you know you hit bottom.

However, I AM lucky because I do not get pain with the sound or light migraine. I am grateful for that but it might be why I miss the signs. I know that stress brings them on. I am obviously in an incredibly stressful situation. I know that I need sleep. I know that I need to eat healthy. I know I need to exercise. There are things that were preventable that I did not do. Also, there were things and situations that I had no control over. I am fully aware of all of this. I made some very deliberate choices, for very specific reasons, and I am paying the price. Now the hard part of paying the price for decisions I made is that I am the caregiver. It is not all about me, it is about my daughter.

Caregivers nor mothers can ever, ever get sick - it is just not allowed. I cannot begin to imagine how scary it must be in a foreign country (or anywhere) to have the person you count on to take care of you day in and day out not feel well. Not be there 100% like they usually are. When you really do not feel well you cannot fake it. It is something that you cannot hide. I will get better, but it has taken a toll on Monica and I am sorry for that. I hope that as she grows up she understands that I have done my best to take care of myself the best I can, but her life situation touches me as a mother deep in my soul in places that I didn't even know existed and that are raw with a protective instinct to take care of her (and my two boys). I will take care of her and put her interests in front of mine always - and sometimes I'll pay a price. All mother's try to learn balance and to put their oxygen mask on first. Not sure I can yet.

My body must have known it had to hang on until my dear Hope arrived. As many of you may know, Hope arrived on Mother's Day to spend our last week here together being a tourist and offering us support in our last days of treatment. She is my angel as I expressed before. I could get sick because I knew as a mom and caregiver that Hope could take care of Monica. She always helps me parent which is so wonderful. I need the team effort and Monica desperately needs her too. They have a fabulous relationship which is a bonus.

I am on the computer which is huge with the migraine. I am excited because this hopefully means I have turned the corner and can anticipate getting better. Maybe tomorrow I feel up to going outside even though it is 112 degrees (we have had the hottest March, April and now May on record!). I would love to be able to go shopping with Hope and Monica and be a tourist rather than lying in bed waiting to get better. I really want to eliminate all my stress and the blog is one area of stress. I will spend time writing when we get home. I do like to write and realize that our experience in India and the pictures and video we have taken are something that needs to be shared. I do not have the time to write nor energy while advocating treatment and being a dedicated caregiver to Monica. Her health situation is so unique and our experience is very different than all other patients it seems important to share.

We leave India on Monday, May 17th. It is time - we are ready.

Meeting With The Doctors

2010-05-04T06:40:00.000-07:00

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

2010-05-04T00:49:00.000-07:00

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 ...

Patients

2010-05-01T02:06:00.001-07:00

I realized that we have never shown pictures of all our friends / patients here at NuTech. When we first arrived there were sixteen patients and the hospital has rooms for nineteen patients. People come and go because you usually commit to either a four, eight or twelve week treatment time. However, Monica's situation is different and I really believed it was important that she come longer to give her every opportunity for healing. We are here six weeks.

Today we have seven patients. Last week was tough for us because five of our good friends left. Tomorrow another patient leaves and we believe someone else is coming soon. On the left is Ryan (red shirt), from Australia, who had a motorcylce accident and is paralyzed. He is here with his brother for two months. Next to him are Nina, Monica, Ashley, and Corben.

This is Ashley who is Monica's best friend here. His first treatment was when we were here last time. He came for three months and we were here for two of those months. We spend most of our time with Ashley and Raven (his caregiver and best friend since junior high school!) who are from New Zealand. Ashley had his accident playfighting with a friend nine years ago and became a quadriplegic. They have become very special to us and are like family. They leave Wednesday.

Gabe is from Minnesota and had his accident on a school trip to Costa Rica bodysurfing. He is a quadriplegic and we met him on our first trip. He also was here for three months when we came for our two month. We became really great friends with him and his dad Matthew and they became have become like family to us. They left last week.

Michael is from Australia (in the middle with his brother John) and has motor neuron disease/ALS. He was here for two months with us when we came last time. He also has become like family to us. They left last week.

Corben's accident was during a high school football game eighteen months ago making him a quadriplegic. He is from California and is here for three months. This is his first treatment. To the left is the security guard, ward boys (cleaners), night manager (orange shirt), and Rita (in charge of housekeeping) with Monica. His mom and aunt are here and they leave in June.

Nina is here with her with her dad for three months from Thailand. Apple is her caregiver and this picture was taken during physio. Nina was in a car accident and is a quadriplegic. Her accident was three months ago. Nina leaves in July.

Vicki has multiple sclerosis and was here with her husband Tim. They are from Washington. They were here on our first trip (this was their fourth treatment) and lived across the hall from us. They left last week.

Jerry is from California and has Lyme. I spent a lot of time with his wife Dolores walking every morning around our neighborhood before I got a very bad dry cough and had to quit. This was his first treatment and they were here for two months. They left last week.

Shannon was in a car accident and is a quadriplegic. She is from Dallas. I spent time with her mom Lola doing chores and she helped me edit my paper. This was her first treatment and they stayed for three months and left last week.

Ron is from California and was in a car accident which made him a quadriplegic. This was his fourth treatment. His mom and aunt came with him and they left two weeks ago.

Betty is from Virginia and fell becoming a quadriplegic. She is in the physio room. Betty is here with her daughter for two months. This is her first treatment.

Adrian is from North Carolina and is being treated for ALS. He is an outpatient staying close by with his wife. This is his first treatment.

In every patient there has been some type of improvement. Everyone is a little stronger physically. You may not visually notice the changes in Monica, but we all know that the stem cells are working in her body to repair, replenish and regenerate. I believe time is repairing damaged nerves and when that is done she will be able to feel again. Miracles happen here. Just to travel to India for treatment is a tough journey for each one of these individuals. Each one of these patients has an incredible story to tell about survival.

Blog Updates

2010-04-30T02:10:00.000-07:00

Nothing new going on - believe me, no secrets - the blog will be one of the first things we update when she notices something. Monica and I struggle to update the blog when you feel you don't have anything to report. So, we are going to try and get down to some basics and talk about our daily lives and India more. We have taken thousands of pictures and not shared any of them with you. Additionally, I have taken some video of one of Monica's procedures that I want to learn how to put together and into the blog. The pictures and video take so much time to organize!

Even though I have not written in the blog recently, for the past few months I have been working on a case study about Monica. I have been observing, researching, analyzing and writing about her daily. It has been a very difficult task because it forced both of us to really look at the progression of her disease and how it has affected her daily life. It also caused a lot of reflection and grieving for myself. My goal has been to capture what her life looks like today and try to explain every detail and answer every question that any one has about her condition. When you meet Monica you meet a "normal" teenager. However, when you look much deeper you realize how amazing and high functioning she has become in a body that does not support her.

I am really glad that I have spent these past few months compiling the information. I knew Dr. Shroff, Dr. Verma, and Dr. Sudeep would be interested. Based on our last blogs you could probably sense that they were having a difficult time understanding why Monica would be willing to do stem cell treatment, but not a lumbar procedure. I didn't plan on giving my paper to the doctors, but wanted to capture what she felt like now before her sensation returned. Once it returns we will never recall these details. However, based on what was happening with treatment I realized the doctors needed to understand Monica as a person better and maybe what I had written would trigger some new direction in their thinking on how to treat her. Reading my paper they now understand much more than we could articulate on why we must follow her intuition. They now have a new approach in their treatment plan.

Keeping the faith ...

I Want More!

2010-04-16T09:20:00.000-07:00

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.

Sour Patch Kids

2010-04-13T10:49:00.000-07:00

Why do I love Sour Patch Kids so much? It's a joke between Ashley, Raven, my Mom, and I that I can sit there and eat an entire bag of Sour Patch Kids without even realizing it. Ashley is from New Zealand and has never had Sour Patch Kids before so I decided this was a good reason to open the bag. Days later they are gone. I'm telling you guys about the Sour Patch Kids because they are a comfort to me. When everything else is chaotic you need comfort. Sour Patch Kids for some reason are my comfort. My Mom and I brought pounds and pounds of candy, but for some reason Sour Patch Kids make me the happiest.

On a different note: movie nights! Ashley brought a hard drive with about 40 movies on it, and we decided to have movie nights now. We've had I think three or four I think now. It's pretty funny because we put both Ashley and I into his bed and my Mom and Raven sit on either a chair or the bed/pad/chair/couch thingy. I bring down my blankie, a couple stuffed animals and am content for the two hours or whatever that we are watching a movie. We always have to eat some candy during the movies too! I'm so glad we brought all the stuff we did. Movie nights are a nice way to hang out and just kind of be there for each other.

I'm off to bed before my Mom gets mad at me. Sorry for the delay in posts I just haven't been able to think of what to write!

P.S. We don't go out much because it's about 107 degrees during the day, and it's just going to get hotter!! AHHH.

One Of Five

2010-04-11T08:52:00.000-07:00

Ashley and I were talking about my numbness the other day and I realized something. I forget what it's like to feel anything. I'm pretty sure that's how I learned to cope with it, I had no hope that it would come back so my brain let go of those memories, I think. We are all talking about feeling this feeling that and I honestly don't know what is going to happen when I feel (obviously I can't feel still). Ashley and I have had quite a couple conversations about everything that has happened and he's fascinated by it. I don't know how many of you know this, but if I close my eyes I can't hold myself up. My vision is all that I have. Ash and Raven had been told this, but they didn't REALLY know until Dr. Shroff one day asked me to focus really hard and train my cells then close my eyes and I collapsed into Raven. Dr. Shroff and I both expected it, but no one else in the room did. It's one of those things that no matter how many times you may say it, you don't get it until it happens.

The fated Lumbar Puncture. The Lumbar Puncture is the one procedure where the stem cells actually get injected INTO the spinal cord. With the Lumbar Puncture you usually get headaches, nausea, hallucinations (sometimes), and you feel like crap for a couple days. I have had my foot firmly on the ground saying I will not do it and no one gets why. Tonight I sat down with Dr. Sudeep and he explained to me why they want to do the Lumbar, and I told him why I wouldn't do it. It has nothing to do with the headaches or things like that. It has nothing to do with my past trauma with Lumbar Punctures. It has nothing to do with the fact I don't trust Dr. Ashish, I trust him with my life. It solely has to do with the fact I am afraid. I'm afraid I will lose the one thing I have left, my vision. To everyone else it might seem I have a lot else to lose, but my vision is how I live, you take that away and I am dead weight. I can't move at all, I would be a breathing blob (if you can imagine). My vision has been badly affected through everything and a procedure last trip made it even worse, and if that were to happen again, I would pretty much be blind. A description of what everything looks like through my eyes: blurry blobs, that are double (side by side), the one on the left is the real one, if you scan something enough I can make out bits and pieces of it. When I was explaining this to Dr. Sudeep I started crying, I didn't mean to it just kind of happened, I'm doing it again right now because I wouldn't be able to do ANYTHING without my vision and I don't know how to explain it to people to where they understand.

Ashley, Raven, my Mom, and I went out to dinner tonight, and we had talked to Dr. Sudeep while waiting for a taxi to pick us up. Ash heard most of the conversation between Dr. Sudeep and I, but he was also trying to organize a taxi to pick us up and wanted to give me privacy. When we piled into the car (I had to sit in my Mom's lap in the backseat behind Ash and Raven was in the middle holding Ash's wheelchair) I had my head between the window and Ash's head rest thinking about everything Dr. Sudeep and I had just talked about the whole way to the restaurant. At the restaurant I apologized for crying earlier and Ashley looked over and said "I wasn't trying to eavesdrop or anything, but I heard what you were saying and now I really get it, your vision is everything to you, it's all you have. You can't lose it. Without it you would have ... nothing." It was like someone else finally got what I have been trying to say, and I think Dr. Sudeep understood too. For now the fate of this procedure lies in my hands, it's up to me if I do it or not. I got a lot to think about.

P.S. Ashley goes in for the Lumbar Puncture tomorrow afternoon. Send positive thoughts and hope everything goes well! I have my fingers crossed.

Catheter Procedure

2010-04-02T01:50:00.001-07:00

I have so much to say about the last 36ish hours, but I have no idea how to put it into words. I'm sitting here starring at the computer screen trying to figure out how to word it. Dr. Shroff requested we meet with a neurologist so we spent yesterday morning doing that. He came up with a couple syndromes/disorders/diseases that I have been tested for and ruled out, but he wants to run more tests that would fully eliminate them. We haven't had the chance to talk to Dr. Shroff about what she wants to do yet. To me it was just one more doctor to add to the other 150 I've seen in the past, I've become immune to meeting them and I feel like I am just telling them a script because I've had to repeat it SOO many times. It's nothing personal, it's just all that I've been through.

As I wrote in my previous post I was going in for a procedure, and I did. We left yesterday after my appointment with the neurologist, and returned "home" this afternoon. I was expecting to be there much longer than we were. It was a two day so I thought that would mean two nights and you come back the next morning, guess I was wrong considering I'm already back. The procedure I did is known as the three day epidural catheter, but Dr. Shroff and Dr. Ashish decided we should try two days first and see how I react. The target of this procedure was feeling. That's pretty much the target of this trip. Dr. Shroff thinks I will have feelnig by this weekend, and I was speechless when she said this. I am hoping I do, but I do not expect to have feeling this weekened. I am determined beyond belief to have feeling back, but I do NOT know when it might happen.

Dr. Ashish placed the catheter in the epidural area, but the stem cells get absorbed pretty much right away into the spinal cord. The main focus was the dorsal root ganglia because this is where the cell bodies of sensory nerves are. It makes sense if we are trying to get feeling. After getting my catheter in Dr. Ashish taped up my whole back, and then I rested on my back for four hours with the foot of the bed raised on bricks. After the four hours I was allowed to move around a little and I walked across the hall and visited with Gabe and Matthew because Gabe was getting a procedure done too. Dr. Ashish came in while I was over there and told me I was ready for my second dose and it was "punishment time again" this meant I was stuck in bed and not allowed to move for x amount of hours. The second dose I was only stuck in bed for two hours on my back with the foot of the bed raised again. Usually with the three day they have you rotate on your sides and stomach, but because we are REALLY going after sensory I was on my back the whole time. It's hard for me to explain exactly why that is, he explained it to me, but I don't really remember the correct terms. I was allowed to sleep in whatever position I wanted to.

When we got up in the morning I had an omelet and toast :) and met with a physio just to keep my legs going. After breakfast and fast physio Dr. Ashish gave me my last dose of stem cells through the catheter and I was in bed for two more hours on my back with the foot of the bed raised with bricks. When my two hours were up a sister (nurse) removed the catheter from my back and I was free to go. So far I haven't noticed any changes, but we are hoping that within the next couple days something will be different. I got over around 200 million stem cells in the past 36 hours. That is jaw dropping to think and really get your head around.

A couple of us went out to dinner, and boy was it nice to all be together again. We were laughing at old memories from last trip, and just hanging out. It was nice AND my first time eating Indian food since we left here. I sure missed the butter naan. I'm with a part of my family again, and I can't find the words to describe that feeling. On the walk home Raven, Ashley, and I were talking about how it feels like just yesterday we were here, and the last four months just kind of flew by now that we are actually here. It's a strange thought, and hard to understand unless you've been in that same type of situation, but it makes sense to us.

There's been a lot going through my mind about everything that I've been through lately and I want to let you all know how lucky I am to have all the support you guys give me and how fortunate I am to be able to do this treatment. When you are lying in a bed for days it's hard not to think about everything, where you come from, where you are going, and what this thing called "life" really is. It's difficult thinking, but interesting at the same time and sometimes it's necessary to just sit and pause for a moment. Don't miss the little things along the way, they are the most important :).

It's getting late so I'm going to try and sleep now! Good night and good morning :)

Jet Lag Does Wonders?

2010-03-31T04:31:00.000-07:00

Second day here, super super busy. Thanks to my friend jet lag, I went to bed at 5PM woke up at 1:15AM wanting dinner, then fell back asleep and woke up again at 5AM and decided to start my day. It's amazing how much you can accomplish when you wake up so early. I had the chance to Skype with friends and family, unpack, shower, eat breakfast, and wake up one of my best friends (who got here early early this morning) all by 9:15AM. If this was last trip none of that EVER would've happened, you can ask my Mom and Hope all about that.

We woke up Ashley and Raven and it was SOO great to see them again. Raven was delirious and doesn't even remember us waking them up. Ashley almost pulled me into his bed he was so excited. It's been so much fun to be back together with Gabe and Ashley again. Ashley stopped by our room for about an hour earlier and we were talking about how neither of us have laughed quite as hard as we did playing ping pong. Gabe is actually in our room right now and has been here for about an hour. It's just like old times :) nice to be back with them again.

Dr. Shroff saw us this morning and was super excited about my walking, but kinda sad I didn't have feeling back yet. Her goal for this trip is to "attack" my brain and try to get the sensory and cognitive. Hopefully her goal will be achieved just like last time. We plan on doing a lot more procedures than last time and actually go in for our first one tomorrow. I'm doing the three day epidural-catheter in two days because they don't do procedures on Saturdays.

My Mom and I this afternoon went and got an "investigation" (also known as an EMG) done. It was a SUPER sketchy place, but hey you gotta do it. It went fine, not very sanitary and I've got some war wounds, but no problems. We get the results tomorrow morning hopefully.

Decorating, decorating, decorating. Everyone here knows our room as the decorated one. As many of you know last time we decorated too. My Mom and I say if we are living here why not make it look like we are. P.S. In the picture that is probably the best my bed will look all trip.

Time to go maybe get a ping pong game going :). As much I miss home, I've missed here just as much. It's the right time to be here, and I'm with my second family again. It's impossible to describe what it's really like over here.

Home Sweet Home?

2010-03-30T00:23:00.000-07:00

I don't quite know what to call this place. I told my Mom we are going home, but I can't put India and home in the same sentence without it feeling weird. Gabe, who was here last time, calls it summer camp. He had the same conversation with his Dad about this being "home" and came to the conclusion, it isn't home. I think I've reached that same conclusion, this isn't home.

I feel like it was just yesterday that I was here doing everything, but obviously it wasn't. It's been four months since everyone here saw me last, and they are shocked by the results. It's such an incredible feeling to walk into a room, but it's impossible to describe to someone else. A couple of the doctors and nurses can tell on my face that there is something different, I'm alive again. They didn't see it last time I was here. My smile is bigger, my laugh is louder, I'm happier, and it's noticeable.

Of course I'm happy to be here, but I miss being home so much. This trip has been a lot harder for me to leave home. Last time it was this trip or nothing and I just didn't care about what was at home anymore, but now that I'm healthier it's hard to leave my pets, friends, family, and my everyday routines. I know this trip will be good, and I'm excited for whatever results I may get, but I have no expectations for anything. We begin our six weeks today.

The Time Has Come Again

2010-03-25T15:48:00.000-07:00

Wow I can't believe it's already here. On Sunday afternoon my Mom and I will once again be on our way to India. It's happened so fast. As I sit at my desk writing this, I'm looking around at everything laid out on my floor ready to be put into a big empty suitcase, my cat snoring soundly on my bed, my dog coming in every five minutes because she wants attention, and my phone that keeps vibrating from friends saying their goodbyes. In three days all of this will be gone... again.
March 30th we land in New Delhi, India and will begin the second part of my treatment with human embryonic stem cells. We will be there for six weeks and are planning on being home May 18th. I'm excited and nervous all at once. Everything will be the same over there, same place that we stay, same accommodations, and same treatment. There are still no expectations for this trip. I got more than I could ever ask for last trip, I'm hoping that even more will happen and I know it will, but I am not expecting to come home with anything in specific or anything at all. Two of my really good friends, Gabe and Ashley, will be there while we are and I am so excited to see them again. This will be a whole new experience, but the same one at the same time. Another chapter in my story that I am lucky to be able to share with all of you.
Thank you for all of your support and prayers and I'm glad I am able to share my story with you as much as I can. I will keep my blog updated while we are gone, but it might take a couple days to get settled :).
Next post will be from India :)

Week by Week

2010-01-28T12:57:00.000-08:00

Before we started this treatment about once a week a new symptom would pop up or something would go wrong. Since coming back in November I have yet to see myself go down hill. It doesn't sound like much if a week goes by and nothing has happened, but to me it means everything. One week will turn into two and two turns into three and so on. I admit to taking everything for granted before I got sick. I was living carefree and thought I was invincible. It wasn't a bad thing it was just how I lived. Now I am so thankful for each day that I get. A week out of a lifetime might seen insignificant when you look at the big picture, but to a lot of people a week could be a lifetime. It's really opened my eyes to everything we are missing in life. We all get caught up and forget to look at the little things that mean the most to us. Mountain View High School is having the Winterball this Saturday. A couple of my friends are going and convinced me to go and I am surprisingly getting excited about it. It'll be the first dance that my brother isn't going to be at and the first dance that I will get to actually dance at in a long time. It'll be a new experience for me and I'm excited for how it is going to go. I am going to start writing down at least one thing new to try each week. The dance is first on my list.

Two Month Update

2010-01-21T12:20:00.000-08:00

It's been almost exactly two months since I left New Delhi and the changes I have seen since then are incredible. My mom touched on them a little in her previous post. The changes I have seen are: WALKING, sweat, cognitive improvements, and sleeping. I CAN WALK. If you met me today you would never know that I was in a wheelchair for eight months and am still learning how to walk. My legs can't yet support me for long periods of time. I'm okay for about an hour, but then I have to rest or I know my legs will start to get weak. I am doing physical therapy three times a week and doing home exercises seven days a week. Through that I can tell I am getting a little stronger and my walk is getting smoother and less noticeably awkward. My friends all said when I got home I walked like Frankenstein, totally straight legged. When I first got home I used my calipers, walker, and cane but I told myself I didn't want to rely on using these things so I slowly eliminated each one. I walked really slowly making sure I was doing everything correctly, but I've gotten to where I am today by doing so. I still have to concentrate really hard whenever I take a step, but hey it's a step!

I am still sweating, gross! Even though the weather here is nothing like it was in India I can still find I am sweating when I work out or when I am wearing to many layers. I hate sweat, but it is such a miracle that I am sweating. I am so thankful to actually have a reason to wear deodorant now! :)

My brain isn't functioning at it's full potential yet, but I know it will get there sometime. I haven't noticed big changes yet, but I think there are very very subtle differences. I have been working on a project for the past couple weeks and I think my brain has been able to keep track of it a little bit better than it would have four months ago. Hopefully I will keep seeing these changes and at some point in time return to school full time.

My sleeping patterns haven't changed much since we left, but getting that extra hour or so every night has been a really good thing. It always feels better to tell someone yeah I'm getting five hours now instead of four. I haven't been able to tell a physical or mental difference, other than losing an hour out of my day. My stem cells need the extra hour and hopefully I will start seeing the benefits from it soon.

I don't know how many of you check my blog anymore, but for those of you who do, Thank you and I wanted to give you all an update on how I am doing. We are planning to return to India for our second trip end of March or beginning of April.

We Are Home and My Girl Can WALK!

2009-11-26T23:03:00.000-08:00

Monica walking out of airport to greet family & friends. Mitch (18), Monica (15) and Kevin (17)

Where do I begin? After a considerable amount of deliberation, Monica and I have returned home. I was torn because I FINALLY found a place that offered Monica not only the possibility of healing, but a place that was actually healing her. My mission has been to do anything and everything to get her well and now that I found the place I didn't want to leave. Monica was torn because she loved the staff and patients at NuTech along with watching herself make progress in her ability to walk, however she really missed her family, friends and pets. With stem cell therapy your body reaches a point where your "cup" is full and it is time to go home and let the cells have time to do their work. Our cup was full. We will again return in March for a six week "booster" and then probably one or two more times.

Monica's stem cells are the miracle inside repairing, regenerating, and replenishing everything in her body to fight the Lyme disease and her own disease. Now at home she has to treat herself special because the stem cells need to grow and develop based on how she trains and nutures them. Progress will continue to happen over time while we are home.

Monica made incredible improvements in a remarkably short period of time:

1. She now sweats - she is not particularly thrilled with this - but I sure am!

2. She has begun to sleep longer. I would always try to have our lights out, computer off, and her iPod music on really "low" (her low and my low are very different even with my ear plugs in) at midnight. I would pass out immediately and we would wake up at 9:40am everyday by Ajo's smiling face (the male nurse). I was getting great sleep which made me think she was sleeping just as long. She absolutely would disagree with me on how long she slept, but at least the lights were out!

3. She moves in her bed. Now this may not seem like a big deal, but with no sensory input when the room is dark and her eyes are closed she never moved in her bed. The position she fell asleep in was exactly the same when she woke up. A couple weeks into therapy I realized that she was moving in her sleep!

4. She is able to crawl forward and backwards. She scooted around the house on her butt for the past seven months (with her feet in front so her pants wouldn't be pulled off). We have a two story home and her room is upstairs in the furthest corner. Monica was not willing to move to the downstairs bedroom and not willing to have any accommodations made to her living space. In the bathroom we did take the glass shower door off and put up a curtain, but that was the only change she was agreeable to. Watching her in physio get stronger and stronger and finally be able to balance herself and crawl on the physio bed five motions forward and then five motions backwards was amazing!

5. She is stronger physically - balance, coordination, strength, stamina. Monica's upper body strength has always impressed me. She was able to effortlessly transfer her body weight anywhere. She would lift her body up, holding onto the handles in my Suburban truck, and place her body in the seat of the truck. However, I felt an urgency to get to India because my fear was that she would not be able to use her arms much longer due to the progression of her illness. Well to see Monica work so hard at absolutely everything they asked of her was so rewarding to me. She became stronger in all areas and fearless in trying to do the exercises. Her balance originally was awful. She easily tipped and if you watched her sit in a position she would slowly tip over if she had to hold it. Now her core is stronger and able to support her better!

6. MONICA CAN WALK! Yippppeeeee Skiiippppppeeee!!! The most amazing part of this whole journey has been to see the work, discipline, focus and dedication Monica has put in to be able to walk out of NuTech. As you all know she has been working tirelessly to be able to stand and then walk in calipers. She was able to go from one huge caliper - metal going all the way up the hips and then a large plastic piece that went around the waist to metal knee braces and plastic ankle braces. She planned on going home in the knee braces.

During our exit interview (the afternoon before we left), Dr. Shroff told Monica that she expected her to be able to walk without calipers on her own holding onto someone by December 15th and then by Christmas she should be walking on her own. Sitting in that interview was fun because I knew that Monica wanted to see if she could walk on her own right then without any support. Monica had never practiced on her own let alone stand without any support. However, once she decided she could do it I just knew she could. She is remarkable. Well, Dr. Shroff said she would absolutely help her and ordered a walker to be brought to her office so that Monica could try. By the time the walker arrived in her office (which was immediately) Monica was up standing all by herself. Dr. Shroff taught her how to use the walker and Monica took off. Within fifteen minutes Monica had gone from not being able to stand without support devices to walking without anyone or anything helping her! Dr. Shroff excitedly called down to physio to not let anyone leave because Monica wanted to surprise everyone. It was such a thrilling moment, as her mother, to watch her WALK across the room all by herself so proudly. Everyone was cheering and crying. A very emotional moment for Monica, myself, Dr. Shroff and everyone else who has been a part of getting her better.

There have been some side affects from the treatment: her vision is blurrier and her throat is more constricted. Time and stem cells should heal these. We all have to assume that so much more of Monica's body has been healing during this treatment. She has not regained any of her sensory yet. The doctors are hopeful that this will occur sometime in the next few months as her nerves continue to repair themselves. I can barely stand it waiting to see what she feels first. Obviously she deserves to eat, smell, feel some pleasurable sensation first and that is what I pray for.

We arrived home (without seizures or the "claws" on the airplane - that shows she is healing) using the wheelchair. Dr. Shroff ordered a walker and cane for us that day so we would have them to use to see our family at the airport. With a wheelchair, the airport always has an individual assigned to you to push the chair around. Our gentleman was wonderful. I told him our plan and he got us all ready. We got Monica up and walking down the hall using her walker where family can see you on a monitor before you walk out the gate. You could hear them cheering. Fifteen people greeted her screaming.

Monica was really slow walking out of the airport that day. Today, a week later, she is not using the walker at all, uses the cane for long distances, and usually doesn't have anything to help her but her own two legs! She is walking into stores on her own, walking around town on her own, and has even gone to the beach and walked in the sand on her own. I am so excited that she has gained the confidence again that her body will support her and allow her to go where she wants, when she wants.

We will continue to update our blog to let you know how Monica is doing. I am so excited for the future. EVERYTHING feels different now. I believe we turned a corner and only good things are going to happen from now on. There is no looking back, just forward to a better and healthier new life for my girl.

Human Embryonic Stem Cell Information

2009-11-13T08:26:00.000-08:00

I realized that most of you probably do not know what human embryonic stem cell therapy is and why it is so exciting. I have been doing research, asking the doctors here at NuTech to clarify details, and interviewing patients for this information. I am not a doctor. I am a mom interested in how the embryonic stem cells can help my child heal. Therefore, let me share what little I know.

Human Embryonic Stem Cells (HESC)
All human bodies have the ability to repair and regenerate to varying degrees in various organs. During a person's lifetime, the body is able to maintain a balance and as age advances, the ability becomes diminished. If the body become diseased, either by its own malfunctions or by viruses or bacteria (which are often the trigger for an autoimmune disease) it leads to depletion of the body's cells and often incapacitating, incurable or terminal conditions. For many of these disorders medication is given to control and / or cure the symptoms, but there is no true solution. Human embryonic stem cells (HESC) can supplement the missing or dwindling cells and replenish or regenerate the malfunctioning parts of the body.

What are stem cells and why are they important?
Stem cells are considered the body's master cells. They can differentiate into any number of types of specialized cells such as muscles, nerves, organs, bone, blood and so on. These properties make stem cells different from the body's other mature cells which are committed to their assigned function. For example, a skin cell can only divide and generate new skin cells. So why are embryonic stem cells so amazing? They are able to become any type of cell because of their "plasticity" (the ability to change permanently, as opposed to elasticity, meaning to change temporarily and then revert back). This makes embryonic stem cells essential for renewing and repairing the body. They are formed at conception and specialize later to become various tissues of the growing embryo. After birth, the body retains the stem cell reserves in various bones and organs. These reserves are limited and when depleted, the body begins to succumb to disease, disorders, and aging. Stem cell therapy offers the potential to stop the cascading progression and to replenish the reserves and fight a wide variety of injuries, diseases and disorders.

What makes Dr. Geeta Shroff, an infertility expert, at NuTech Mediworld in India different?
There are stem cell options around the world. To date, NuTech Mediworld is one of the best known stem cell centers. Dr. Shroff, a physician trained in in vitro fertilization, has been using HESCs to treat incurable or terminal diseases. Dr. Shroff's process is different than any other options because she has developed the technology to create, by the use of a single donated embryo, an infinite number of stem cell lines eliminating the ethical issue of destroying embryos for research and treatment. However, this one special embryo life now is powerful because it has given life to hundreds of individuals with incurable and terminal conditions. Dr. Shroff has been able to grow embryonic stem cells without the use of any animal products. And she has the ability to freeze and thaw her cells to allow storage and transport.

During her laboratory research and with full consent, she used a surplus embryo from an IV donor who underwent a barrage of tests including a complex medical and genetic history. Theoretically, this one embryo can treat the entire human population. Every day we hear about other treatments around the globe using stem cells (fetal, umbilical cord, adult, rats, mice, etc.), but Dr. Shroff has pure human embryonic stem cell lines that do not show any immune rejection in the body. Embryonic stem cells do not have any antigenic proteins on their surface and thus do not require immunosuppressant drugs. This unique cell culture methodology makes the HESCs universally acceptable without the need for cross-matching, irrespective of gender, age, or race. To date, there have been no side effects reported in over nine years of therapeutic usage. This therapy is being used to clinically treat patients suffering from various conditions all presently categorized as incurable or terminal: spinal cord injury, diabetes, multiple sclerosis, Parkinson's disease, cardiac conditions, and many more.

What is the difference between India offering HESCs and other countries?
Dr. Shroff's type of work is governed by the Indian Council of Medical Research, which sets forth guidelines for stem cell research. Under Indian law doctors may treat a condition or disorder that is considered incurable or terminal with novel procedures. Dr. Shroff is not bound by many of restrictive regulations and policies that are present in other countries (it is illegal in the US), compelling patients to travel from all over the world for this revolutionary treatment. During our treatment we have met people from Egypt, Iceland, Brazil, New Zealand, Australia, Argentina, and the United States.

What makes HESCs better than other stem cells?
When a sperm fertilizes an egg, it becomes what is known as a zygote. Many scientists view the zygote as the ultimate stem cell because it can develop not only into an embryo, but also the surrounding tissues, such as the placenta. Because the zygote has the highest degree of plasticity (ability to permanently change), it is referred to as a "totipotent" stem cell. Totipotent stem cells have the potential to generate all the cells and tissues that make up an embryo and that support its development in utero. The zygote begins to divide thirty hours after an egg fertilized and by the fifth to seventh day, the cells form a blastocyst. Dr. Shroff harvest them at 24 to 48 hours - pre-blastocyst.

The embryonic stem cell is defined by its origin - that is from one of the earliest stages of the development of the embryo, called the blastocyst. Specifically, embryonic stem cells are derived from the inner cell mass within the blastocyst at a stage before it would implant in the uterine wall. The size of this blastocyst (embryo) is about 0.1-mm across or smaller than the size of a period at the end of this sentence. These stem cells are somewhat less plastic and more specialized than a zygote. Those on the outer surface of the blastocyst develop into the placenta and other tissues that surround the fetus, while those inside - referred to as embryonic stem cells - become the cells of all the fetal organs and tissues.

The embryonic stem cell can self-replicate and is pluripotent. Pluripotent embryonic stem cells originate as inner mass cells within a blastocyst. Such stem cells can differentiate into any of the more than 200 types of cells in the human body. Most scientists use the term pluripotent to describe stem cells that can give rise to cells derived from all three embryonic germ layers - ectoderm, mesoderm, and endoderm. All of the many different kinds of specialized cells that make up the body are derived from one of these three embryonic germ layers.

What is HESC therapy?
HESC therapy is given to patients who commit to either a four, eight or twelve week period depending on their health condition. During this time the patient is given stem cell injections into specific targeted areas: intravenous, intramuscular, and spinal procedures. Dr. Shroff starts with a low dose of HESCs at the beginning of therapy and increases the dosage over time per the patient's needs. Along with receiving HESCs, the patient receives intense physiotherapy, occupational therapy (based on the patient's needs), and participates in yoga. The combination of these helps stimulate the HESCs to go to locations where the body needs them most. Additionally, patients need to realize the importance of having a positive attitude, believing they can make their body create the changes needed, having a healthy commitment to treating their mind, body and spirit like a treasure to heal their body, working hard at making an effort to exercise, eat nutritiously, think positive, and nurture their stem cells. Progress happens over time and not immediately.

Making the Tough Decisions

2009-11-13T02:32:00.000-08:00

One of the best and riskiest decisions of my entire life was to take Monica to India. It was a difficult one because not only does it impact my family financially (it is all cash, very expensive, and we need to return several times over the next year or two), but we had to leave behind Kevin a senior in high school (who wants his sister to get better, but the trade off is that his mom and sister left home for a couple of months) and Lance - luckily Mitch started his freshman year of college two days before we left so he is distracted and consumed by his new lifestyle.

Personally, I believe that I needed to try absolutely everything possible in the world available - regardless of costs - to get my girl well. Money is just money. I learned a very valuable lesson growing up that money cannot buy you health or happiness. Sure it can make life more comfortable or give you options, but it cannot buy the most important things you need - hope, love, courage, health, happiness, etc. Money makes it possible to try everything, but if you don't find the right people or places it doesn't matter how much you have.

I have known several people who have died because they could not find a place to go to heal. They could not find a place that could stop the progression of their disease. They could not find the most brilliant people, medical equipment and medicine available to mankind at that moment when they needed it. They could not find answers because the medical community didn't have answers. I now know we know so very little about how our bodies work. Especially if you have a condition that is now called "Monica's Disease." No doctor so far around the world has been able to name her disease or recognize her symptoms. It is truly a miracle that our bodies are able to work as well as they do. Be grateful that yours does.

I have learned an incredible amount about stem cells and have witnessed the miracles they can create in people's bodies clinically. Stem cells are going to be the new wave of medicine in the future. They will be available in our pharmacies and used as a first line of treatment for injuries or diseases or disorders I believe in my lifetime. Monica has become a pioneer being treated with human embryonic stem cells. She is the youngest person in the world to receive human embryonic stem cell treatment from NuTech Mediworld - one of the world's leading stem cell centers - outside of India. NuTech Mediworld does have an outpatient clinic for children.

We did not have much hope before we arrived. In fact - I believe she would have died had we not come. I had to make the tough decisions and be willing to try something risky and experimental. Monica had to be willing, brave and have the courage, determination and dedication to try everything possible to heal. Well, it has been one of the best decisions ever. Monica continues to get better and better and we now believe it is possible for her to heal.

I cannot begin to express my gratitude to all of you for your continued love and support throughout this journey.

Expectations

2009-11-12T09:14:00.000-08:00

The treatment I have been doing for the past two months was our last resort. There was honestly nothing left to try back home. I am in the same situation as almost everyone here I think. We are all at our last resort here, we've tried everything and keep getting the same answers. The spinal cord patients are told they are never going to walk again, Lyme patients are pretty much told there isn't a way to kill it completely, ALS patients are given a range of years they have left to live, MS there's no way to stop it, and so many more along those lines. Yet none of us will give up and that is exactly how we ended up at such an amazing place with such amazing doctors and people supporting us. It's been really hard to leave everything behind to come here, but it was absolutely worth it. For me so many treatments have failed in the past that I have learned to keep my attitude positive towards something working, but bracing myself for the worst. Before coming here I didn't really have expectations, I was hoping for a lot, but I had no expectation to go home walking or feeling or better. Everyone who has been here in the past has seen amazing results which gives you hope and encourages expectations which are much bigger than reality. My Mom came here with the hope that I will go home with ONE change, it didn't matter what, anything. One change would prove to us that I was done progressing and I could then move forward and start getting better. Other patients here came with the expectations that they would be able to walk out of here if they are wheelchair bound (this is an example it's not true I'm just trying to give you an idea).
If you have the mindset that you will be walking out of here you will miss all the little things that are happening. Towards the end of your trip you will feel like you didn't accomplish much because you didn't achieve the one goal you came here for. When every one else who has been here with you can see incredible improvement in strength and balance and everything else. If you are to come and do this treatment, you need to come with an open mind and really pay attention to everything that is going on in your body and even if it doesn't meet your goal in the first trip maybe in the second or when you are back home it will happen. This whole entire post probably sounds like I'm blabbing on and on, but my point is this trip has gone beyond all of our expectations and has given us a new found hope. You need to come hoping for the best and not losing that goal, but also making sure you don't get caught up in more more more.

Ping To The Pong

2009-11-07T06:30:00.000-08:00

Gabe and I were hanging out downstairs one night while his dad was out picking up his wife from the airport when we came across four ping pong paddles, three ping pong balls, and a net in a little cupboard. Matthew's wife's plane was delayed about and hour and a half so we were kind of watching over/hanging out with Gabe while his dad was out. After we had been through all the games they have here (chess, scrabble, cards, dominoes, etc.) we found the ping pong set and decided that we were going to play no matter what. Since Gabe is a quadriplegic he can't move his legs, and his arms he can lift up and down a little bit. We set it all up and started playing. Since Gabe can't grip the paddle, we strapped a paddle in each hand using his gloves. By the end of that night (around 1AM or so) we could hold a rally of six. For the next week or so we didn't play often, but we just started playing with about seven other patients and it's been SUPER fun. We all start laughing and can't stop for hours. We are now playing doubles because we have so many people. The doctors find it to be one of the funniest things ever to watch. It's truly amazing to watch a quadriplegic play ping pong, especially in doubles. It's so fun and gets everyone involved in it. I'm sure going to miss not playing and hanging out with everyone at night.

Green Park

2009-10-31T23:39:00.000-07:00

We live in an area called Green Park. It is such a small area compared to the rest of Delhi. It takes us about 20 minutes to get to the heart of the city from the hospital depending upon the time of day with traffic. I have really liked living in Green Park. The hospital is on a very busy street but you have access to a shopping area (two blocks long with stores on just one side) that is about a five minute walk. You can walk to Deer Park which is again about ten minutes from here. This park is quiet (the first place I could actually hear birds chirping), green with plants and trees - no grass, and has a fenced in section of deer - they look like bambi with white dots, but many have antlers with their velvet still on. You can also walk to another area about ten minutes away that has a quaint feel to it with cobble stones and then end up at some spectacular ruins.

The hospital has an outdoor lift that takes patients out of the building. Once outside there is a small space for parking in front of the hospital. If we want to play cricket we have figured out how to get most of the cars moved out of our way. Green Park is located close to many other hospitals and laboratories. Just walking for five minutes to Green Park to shop is an experience in itself every single day. The vehicles drive on the opposite side of the road than in America. It is so hard to remember that when you are walking. You have to cross the street at two places to get on the side of the shops. You would think that is a breeze but in fact it is a challenge. The first few times you are scared, but after that you just become determined and hold your ground for the opportunity to just go and expect them to stop or swerve. You have to feel like you are a vehicle yourself to create the space and have a command of presence for them to believe you are NOT going to move. It is no problem now because I get it, but those first few steps were a challenge in courage.

On our walk to Green Park you see bicycles used for transporting everything under the sun - regular bikes and ones that pull a wooden small trailer. They transport blankets, trash, furniture, laundry, hospital supplies on a regular bike (three cases of 1 liter bottles of water, boxed milk and other supplies), pipes, bricks, sticks, wash machines, brooms, etc. You see women in their beautiful bright saris doing manual labor carrying bricks, grain, sand, groceries on their heads, or raking rocks and digging trenches. The saris are beautiful and look like splashes of butterflies along the brown roads. There is a man on one corner that irons clothes (coal irons) on the street under a tarp and another woman in the street next to the shops that does the same. There is a man that gives men a razor shave outside in front of a mirror tacked to a fence. There are several people that set up on the street to make food out of one bowl and coal burner.

The shops along that strip really can provide anything you need. They are about 20 feet by 40 feet with an aisle of merchandise in the middle. You can barely walk around and pick out what you want inside. The places are stuffed with merchandise and some times you need to ask the grocery "boys" (really men) to find what you want hidden away. Everyone is very helpful. There is an amazing amount of American food here just in Green Park if you look hard enough. Not your favorites or comfort food necessarily but many, many familiar labels. Everything is in English and they write in English, but Hindi is the language most speak. You can tell who has been educated because they speak perfect English. Some of the children talk to you and are so proud that they can converse with you in English. Education is very, very important and taken seriously. You can see the pride in the children's' faces when they realize they can speak to someone white. There is a toy store, 7 little grocery stores, three salons, two magazine stores, two health stores, several phone stores, a camera shop, two restaurants and two coffee shops - all of them very small stores. The only difficulty with the area is that they are not accessible. You need several people to help lift Monica up onto the area (18" curbs and steps) and then the pavement is all cracked. We do it, but it's just not easy. She cannot fit into any store either. It's not fun being left outside while I go in to shop for groceries or plastic containers at the toy store. I go now by myself unless I bribe her with ice cream and then she will make the trip.

Actually for the first time, I told her I'd get her ice cream if she wore her braces to get up the steps and see the ice cream to pick out. I pushed her in the chair and she stood up and moved straight legged in the calipers up the huge curb and stairs and then she waddled up three more stairs to be in the shop and look at the ice cream. She was mad as a hornet but did it. Bribery works wonders. She is NOT comfortable in her calipers unless she is in physio. She looks like she would be but without them her legs do not support her yet at all. Her confidence level with the braces hasn't caught up with what she is capable of doing. Her knees still don't support, but that should come in time. The rest of her body is remarkably strong.

I cannot begin to understand psychologically how difficult it must be, because you cannot feel anything, to just put yourself out there with confidence. She is incredibly stubborn and fearless which is why she is still alive. Monica continues to amaze me everyday with her spirit, joyfulness and the willingness to rise up to any occasion and try everything. She never takes advantage of her situation and wants to get the absolute most out of every day!

Monica is helping me put together a slide show of Green Park. It should be up in a couple of days.

Delhi

2009-10-31T22:45:00.000-07:00

To get perspective of where we are living you need to understand Delhi a little better. The city is one of the oldest continually inhabited cities in the world with a history dating back to 1,000 BC. One of the earliest structures that exists is the 1,600 year old Iron Pillar at Qutb Minar (at the time we saw this we couldn't figure out why everyone was so excited to see a pole! The pole also has never rusted.). There is Very Old Delhi, Old Delhi, and New Delhi. The New Delhi was designed to house the British administration in 1931. There are close to 800 politicians in Delhi when Parliament is in session and India is the world's largest democracy. Delhi is the largest city in India with a population approaching 22 million. The country has over one billion people living in it.

A quarter of the world's destitute live in India. Over 380 million Indians live below the poverty line, subsisting on less than US1$ a day and almost 89% of the total population live on under US$2 a day. Conversely, as India's economy grows millionaires are being created at a record rate and there are now over 100,000. This is a 20% increase over last year. Bridging the gap between the 'two' India's is perhaps the greatest challenge facing the country today - and for a visitor to come to terms with. There is a rapidly developing middle class, but you have to be sensitive to the fact that wages are low and even a middle-class family is likely living on less than US$1,000 a month.

Just watching how the hospital operates I assume there are extremes in what wages are being paid to people. In general I know that the sisters (nurses) were brought in from another state to work here and are living in a hostel together, the ward boys are hard laborers and come from the mountains and do not have hot water where they live, and then our doctors and managers have drivers to take them around. The influences of Hinduism and the tradition of the caste system have created a culture that emphasizes established hierarchical relationships. Indians are always conscious of social order and their status relative to other people, be they family, friends, or strangers. All relationships involve hierarchies. In schools, teachers are viewed as the source of all knowledge. The patriarch, usually the father, is considered the leader of the family. The boss is seen as the source of ultimate responsibility in business.

I can see this applied in my little time observing people in India. Dr. Shroff is absolutely the boss and takes precedence over everything. When she asks for something it is done immediately. People take her phone calls when they are in a meeting. Dr. Sudeep has a phone dedicated to just her. He has it with him at all times and will answer it always immediately no matter what is going on. Dr. Shroff and Dr. Ashish realized on Thursday that Monica was having cognitive issues and was an A+ student and in advanced classes before she dropped out of school (they have been very focused on getting her to walk and trying to get any type of sensory back and didn't fully realize how impacted her quality of life is with not going to school), that Dr. Shroff walked away from us, went into talk to the director of the children's department and she came back and told us that Monica would be starting that day meeting with him from 12:00pm to 12:40pm everyday. During his evaluation of Monica he answered his phone (of course I thought he was extremely rude, as I have every time someone answers their phone in front of me mid-conversation) and started talking to Dr. Shroff. After he evaluated Monica (he stated that she was extremely intelligent and has a superb working memory (short term memory), but she has an information processing deficit. He now not only sees her alone daily, but is dedicating extra time to her throughout the day and asked her to come to his department whenever she has free time.

I continue to be amazed at the support system provided to us if the doctor believes we need additional support. They will provide you the resources if they believe your body needs them - never before. They really pay attention to what the patient's body is saying and what they observe collectively. They scientifically make their decisions and are constantly weighing the trade offs. I wanted more occupational therapy for Monica and couldn't understand why I couldn't hire our therapist outside the hospital time. Well, they just didn't believe that Monica needed more than two days a week. There was not enough proof that it was worth the investment. It is important and critical to do, but not everyday. I love that they are very clear cut in priorities. It is such a pleasure working with people that are decisive and invested in the outcome - my girl's quality of life!

The Garden of Five Senses

2009-10-31T12:44:00.000-07:00

Marg had heard about this garden from a previous patient and they spoke highly of it and she wanted to check it out. She invited anyone who wanted to come with. My Mom wanted to go and I decided it'd be nice to get out of the hospital for a little bit. The irony of going to the Garden of Five Senses is the fact I am missing three senses and the other two kind of struggle. Marg, Bret, my Mom, and I all joked about how funny it was that I was actually going to go. We started coming up with ideas like well of the five paths am I only allowed to take two of them or can I pay a third of the price because I don't have all the senses to experience it? On a map the place looks pretty easy to get to, but of course no one knew how to get there. We were trying to describe it and our taxi guy was asking everyone he could find to see if they knew where it was. Finally we decided we have to try and if we don't make it there we will hopefully end up some other interesting place. The taxi driver pulled over three times to ask someone if they knew how to get there, and by the time we finally reached the place I understood how difficult it was to get to and how to map doesn't say that well where it is with all the construction they are doing. It took us about a half hour to get there. As soon as we got there we started noticing how funny some of the signs are. Bret and I had a good laugh about the "Please maintain decency" sign. He decided we needed a picture in front of it, so we took our picture in front of it with the perfect face. We all got a very good laugh about that one. The garden itself was spectacular. It is 20 acres and it has winding paths, it's a pretty romantic place you could tell because there were A LOT of couples there. Oh well we still had fun looking at everything. There were pretty steep hills to get everywhere, but there were ramps so it was all handicap accessible. After going through the garden we were hungry so we stopped at a restaurant that was at the entrance. The restaurant was called Fio and it had only opened about two weeks ago. Fio was gorgeous and the serving sizes were fairly decent. It was an upscale place though so it was a little more on the pricey side, not too bad though. The biggest joke was that they couldn't figure out how to split a bill. It took about six people and over a half hour to get our bill, it was pretty ridiculous. It was a fun, relaxing day, and it was nice to get to know Bret and Marg a little bit better.

These two pictures are of Bret and I in front of our "Please Maintain Decency" sign.

Room 204

2009-10-31T10:21:00.000-07:00

I realized today that know one really knows about where we are living and what our room looks like. First we live in a 20 bed hospital. It originally was a hotel and has beautiful marble in the lobby, stairs and hallways. We live in room 204 and look out the front windows of the hospital on the busy street. We took a lot of time when we first arrived trying to make our room look as comfortable as possible and not look like a hospital room. That was a huge priority for me. I wanted it to have a local Indian flavor to it along with the creature comforts that make life a little easier.

Our room is the size of a dorm room - probably 15' by 20'. We have Monica's room, my room, a kitchen, social area, medicine area, changing area and therapy area. Monica's room is the hospital bed that has a hand crank to move the backrest up and down (no electric comforts). We bought her a quilt that has a beautiful bright cheerful elephant pattern in between two muslin pieces of cotton. She loves it. She has five stuffed animals in her bed along with her favorite pillow from home. We moved her bed against the window which runs the length of the room. The window has a sill that she has put all of her everyday items and nick knacks on. There is a night stand next to her bed that plays her iPod and there is a clock that we brought from home. She also has a hospital bedside table (our kitchen table) that she uses for her computer, to do cognitive therapy and occupational therapy exercises, to eat meals off of and for medicine. Under her bed is her suitcase with all of her clothes for our stay that she pulls out whenever she needs to change. We truly are living out of our suitcases. There is not ONE drawer in the whole room or bathroom. The other two suitcases under her bed are the carry on luggage we brought FILLED with medicine. I pull those out when I need to refill medicine containers.

My room has a little wire rack, that was supposed to be for the bathroom, I use next to my foam fold out bed. It is a chair when not the bed, but I have to have three little pillows on it under my legs or I slip right off the chair onto the ground. There has been some laughter with that graceful move. Right now I am typing on the chair and my knees are actually higher than my chest sitting! My bed is pretty funny too. I have to have the bottom of the bed flipped under so Monica can use her chair to get to the bathroom. I feel like I sleep in a U shaped position with my feet always higher than my head. If my bed is flat then there is not enough space for her to back up into the bathroom with the wheelchair. (Our choice because I could arrange the room differently.) I am right next to the free standing closet which has full length mirrored doors. I wake up looking at myself - it is never a pretty sight to see yourself so clearly before you get out of bed. Next to the closet I made a table out of six boxes and covered it in a shawl. We use this as our medicine table and next to it I put her "legs" that I carry in a bag (her calipers and shoes).

I now know you all will be truly jealous of our kitchen. Just imagine the things you can create here! We have a 18" by 30" counter. A glass shelf on top of that which is 12" by 24". We have a toaster and a 2 cup kettle. A dorm refrigerator that we have filled with just water, jam, 6 eggs (I bought a skillet), and boxed milk. There is a larger wire rack filled with food and I purchased a couple of bags to also put snacks in.

Our bathroom has a beautiful granite countertop and a sink that I use to do the dishes in. Next to the sink is what we all call the showlet. There is a toilet and then the shower is open next to it. We have to squeegee the whole floor after every shower. We do have a plastic chair, which we use mainly outside in America, that came with the room and we use it in the shower for Monica to sit in. If we have company I wipe it down and bring it in the room - some one visited us recently to ask questions about our experience here and they never knew they were sitting on our shower chair! They do provide a shower / commode chair that we gave back to them.

The room works and we get along great. If we didn't it would be a problem. I sleep with ear plugs because she needs to go to sleep with the music on and the headphones do not stay on her. Because she sleeps more (yippee skippy for the stem cells!) our bed time is midnight. When we went to Germany our bedtime was never the same time and often we were playing cards at 2:30am till I passed out. This has been such a better trip for me because she sleeps more. I am beyond thrilled. The only thing about our whole room situation I forgot to mention is the wheelchair. It is in the middle of the room all the time. On our next trip hopefully we will come WITHOUT the chair! I'll write more about where we are living in the next blog. We love and miss you all!

Occupational Therapy

2009-10-31T00:46:00.000-07:00

About two and a half weeks ago I started doing occupational therapy with Harsha. Dr. Shroff thought it would be a good idea to start retraining my brain as to what things feel like. For example when Harsha rubs a cotton ball along my arm I think about how cotton used to feel and how it is soft and a nice feeling, but when she rubs the rough side of a sponge on my arm I think about how it is hard and not pleasant. Harsha's goal with me is to try and get my feeling back and she works on that by doing various deep pressure exercises, textile exercises, movement exercises, etc. I see her about a half hour twice a week. We haven't set confirmed days or times yet, but it's not like we have any other plans. Today in therapy we did about seven or eight different things. We worked on deep pressure, she would push my fingers together and push my shoulders down, etc. We also worked on movement by me bouncing up and down on a ball, moving a board back and forth and rolling putty into a ball. Since we are also trying to get smell back we are doing an aroma therapy by using an orange scent right now. A few new exercises came up today, finger painting, being wrapped up in a bed sheet like a burrito and getting a ball rolled over me, and trying to differentiate between hot and cold water. Hopefully therapy will help me a little bit, and I will be able to continue it back home. I think it might be more useful when I can feel again rather than now because when I feel again I will have to retrain my brain as to what everything is. It's up to the doctor's though and I will give each thing they through at me 110% and just hope it does something.

The pictures above are from today, they are me being rolled up into a burrito with Harsha applying pressure with a ball, and my finger painting.

"Family Dinner"

2009-10-30T11:24:00.001-07:00

Tonight was "Family Dinner" :). Every once in a while about ten or so of us get together and order take out and eat around a huge table in the Common Room. We ordered Chinese food and some Indian dishes too. It's always fun getting to sit around with everyone and feel at home by eating a meal together. We all get to know each other a little bit better and we always have some great laughs together. Bret, Marg, Derek, Corky, Mitesh, Vasant, Gabe, Matthew, my Mom, and I were all shoved into the Common Room eating a delicious Chinese meal. It was pretty funny because once all of us got our food we all went practically silent. We were all so happy and content with our meals. Once we had all finished eating Matthew asked a very interesting question. He asked, "On a scale of one to ten, how glad are you that you came to India to do this treatment?" We then went around the table answering with whatever number we believed. Generally you could say that it ranged from a 6 to a 10. That is about the standard range if you were to ask anyone who's been here I think. Asking this question changed the mood of the Family Dinner, but it was really interesting to hear every one's answers and reasons. We talked about how different expectations are for spinal cord injuries than diseases. The main thing anyone with a disease comes here with is to stop the progression, anything else beyond that is just icing on the cake. With spinal cord injuries they hope for something, anything, to come back. We had about an hour or so long discussion about everything and it was really eye opening to see how similar but different we all are. It was really nice because all of us knew that whatever we said, we knew that someone else in the room would understand it better than someone back home. We all agreed on the fact that this trip has been bittersweet. Leaving home was really hard, but knowing you are going to try something to hopefully get better made it worth it. Now that we are here it's going to be really hard to leave because we have met so many amazing people, who can somewhat understand what you are going through and we want more treatment rather than giving it a break and going home. We want more now. Hopefully we get to have another dinner again next weekend. :)

Celebration

2009-10-29T05:50:00.000-07:00

Last week my physio gave me permission to start using my calipers outside of physio. My only rule was that they had to be locked and I had to have someone next to me to catch me if I were to fall. My Mom and I wanted to celebrate the fact that I was now allowed to start walking "on my own." We asked Gabe and Matthew if they wanted to come celebrate with us and get ice cream over at Green Park. Green Park is about a five minute walk from the hospital. I put my calipers on while we were in our room and got in my wheelchair and my Mom wheeled me there. She didn't want me walking in the street because drivers are pretty reckless here. When we got to the front of the ice cream store she let me get out of my chair and walk up the couple steps and into the store. It was so exciting because I could finally actually see the ice cream flavors rather than just the signs. I picked out the ice cream I wanted, a chocolate moo, and we went over a sat down. We were with Gabe and Matthew and we were all kind of in shock at how I was actually walking around. My Mom gave me permission to walk home from the store. I have never pushed a wheelchair before, and it was probably the weirdest feeling ever pushing my own chair home. I'm a pretty slow walker as you would imagine, so our five minute walk was about fifteen minutes. It was well worth it though! The best part of all of it was when we got back I ended up pushing Gabe with my wheelchair, like a train, pretty fast. We definitely weren't in very good control and hit the walls and plants a couple times. As I was pushing him we went passed Dr. Sudeep's office and he was very confused at first because he had only seen Gabe going by faster than usual and the front of my wheelchair with no one in it. He then saw that I was pushing my wheelchair and started laughing. Dr. Sudeep was so excited and happy to see me walking and pushing Gabe. It gave me enough confidence to know that when I get home I will be able to do more on my own.

Yes I did manage to spill ice cream all over my shirt, as always.

Busy, Busy, Busy

2009-10-29T02:49:00.000-07:00

Today has been a super busy day! This is the first time I have actually gotten to sit down and turn on the computer all day. We woke up about 9:20 this morning and got ready for physio at 10. Physio was usual time, about 10 to 10:50. Dr. Shroff and Dr. Ashish made there rounds and my Mom asked them a couple questions. They then realized that I had gone from being an A student to dropping out of school and they couldn't believe it. The whole entire trip they have been focused on my sensory and walking kind of forgetting about how impacted my brain is. Today it clicked. Their goal has always been to get me to walk and feel, and my cognitive problems were put in the back seat. Once they realized how bad it truly was they wanted to really help with it. I am now going to start going to "cognitive rehab" as Gabe calls it. Everyday now a doctor is going to come up to our room for 40 minutes and help me with memory, writing, etc. After meeting with the cognitive doctor I came back up to my room and got ready to go do a procedure. I did the Deep Spinal Muscle procedure in the back of my neck. Originally they were going to do it in my lumbar area to make my legs stronger, but once they found out about my brain issues he changed it to my neck. I asked him when I was going into the room why the neck, and he said because it's closer to your brain, simple as that. Dr. Ashish was really excited when he found out how smart I am, and asked me if I would write up what feeling nothing feels like (if that makes sense). He wants me to write down what it feels like to touch a pillow or hold a drink, etc. Once he was done giving the procedure I was brought back down to my room and was told to lie down in bed for an hour. During that hour there was a Mother and Daughter from Australia and the Daughter has Lyme's Disease they think. She wanted to find out more about Nu Tech and if it is worth it. We told her it's worth every penny. About five minutes before my afternoon physio I was allowed to get up from my procedure. I was then off to physio to work my butt off yet again. Now I am done with physio took a little break to write this post. Gabe just came over and told me a couple people are going down to play cricket so I'm off to go play. I'll write more later!

Group Walk

2009-10-28T05:20:00.000-07:00

Yesterday was a super fun day. When Hope was here we went to a little park called Deer Park. It isn't handicap accessible and my Mom wanted to be able to take everyone from the hospital over there to see the deer and just be somewhere different. She went out in between my morning physio and my afternoon physio with a patients wife, Marg. Marg and my Mom went to scope out and find a trail that we were all able to go on. They succeeded in finding one and around 3:30 we all left to go see Deer Park, Haus Khaus Village, and the ruins we found on our third day here. Ashley, his friend Darrio, Gabe, Matthew, Matthew's wife Kristen, Marg, Bret, my Mom, and I all went on this walk. I had been to Deer park two or three times before and it was fairly easy for me because I could transfer out of my chair onto a pole and then have my Mom put the chair through when necessary. With everyone else that would be much harder though so my Mom had found a path that worked. I had not gone on this path yet and it was fun to see it. The park is a lot bigger and green than I had originally thought it was, and none of us could believe how close it was! After Deer Park we walked over to Haus Khaus Village, which is right outside Deer Park. None of them had been to Haus Khaus yet, and they couldn't figure out how we possibly found it. We went down a back alley that had some pretty cool shops and it remind us of being in some European little town with cobblestones and the buildings. At the end of Haus Khaus are the ruins that my Mom, Hope and I had been to before. We wanted to show them how beautiful they are and how anyone and everyone is allowed to just hang out on them. They were all amazed at what was hidden back there and that it was so close to the hospital. A couple even said they would want to bring a book and sit there all day and read. It was definitely a lot of fun to get us all out of the hospital and go do something so simple together. We all want to go again soon! :)

This is a picture of me, Ashley, and his friend Darrio (pushing Ashley) at the ruins. It looks blurry, but it's the dust/quality of the air here.

Cricket

2009-10-28T04:33:00.000-07:00

As a majority of you all know, India's sport of choice is Cricket. All the staff here just LOVES Cricket. We will be sitting in the Common Room playing games at night and one of the workers will come over with a cable box plug it in sit in the hall and watch Cricket. It's so funny to see how into it they get and how they watch ANY game, not just India. Matthew, Gabe's dad, went to the toy store one day and came back with a Cricket bat. I don't know all the terms for everything, but it was along those lines. On that day we decided we are all going to play Cricket one of these days. Gabe wasn't feeling well for about a week so once he started feeling better we got everyone outside and were playing Cricket. Gabe, who is a quadriplegic, was pitching and everyone else was in the outfield. We got our security guard playing, about five other patients, a couple caregivers, at one point one of our doctors came out for a little, and anyone who was walking down the street that wanted to play. The scoring was if you hit it over the fence it's a six anywhere else is a four. The wicket is made up of two bottles (coke bottles, squirt bottles, water bottles, whatever we could find). It's a lot of fun because anyone who wants to play can come out and play, and if you don't want to play you can just hang out and watch.

The Past Couple Days

2009-10-28T04:18:00.000-07:00

I am so so so sorry we haven't updated in a while. It's been really busy here lately and I haven't really had the chance to sit down and post. If I did get the chance I'm Skyping back home or responding to emails so it's been a little difficult lately. Thanks for sticking by us though and still checking for a new post.
For the past couple days we have mainly just hung out around here, trying to find ways to keep us all entertained. We are all starting to come up with more and more ways to keep us entertained. Lately it's been cricket during the day, games at night, and occasionally walks around Green Park. I'll post separately about all of those. Two people left this week, but for the next couple weeks no one is leaving so no goodbyes for a while. Goodbyes are so hard because you don't know when you will see these people again and you all become so attached to each other.
I reached my six week mark today which is really exciting for Lyme patients. Usually around six weeks everything starts to come together and that's when you start seeing the most improvements. My mom and I are both getting super excited because we are just waiting for the day I wake up and say "Wow, I can feel." It will definitely be crazy if that will happen. The doctors are really looking forward to seeing what improvement I will make next, whether it be smaller calipers, feeling, my vision, anything.
Sorry this has taken so long to update, it should start being updated again daily, even if they are super boring posts, just to make sure you guys are all in the loop.

We Are Thriving!

2009-10-18T10:58:00.000-07:00

I am doing great and actually thriving! I love India and am happy here. Everything with Monica is going well. She is getting stronger physically each day with her walking. She has gone from full calipers (up to her waist) to just knee braces right now. It is amazing to see her improvements every day even without any sensations. On Monday she couldn't hold herself up in the new braces - they customized one for her feet and ankles and one for her knees. On Tuesday she could just stand using the parallel bars. On Wednesday she began walking using the bars. On Thursday she put on her shoes for the first time in seven months (without the feet and ankle braces) and practiced with the bars. On Friday she walked off the parallel bars (only in knee braces) around the physio room without any additional support (such as a walker or crutches) and I convinced her physio to let her take the elevator upstairs to the reception area to look outside. I believe she may even walk off the plane by the time we are done here. It is amazing how fast she can make gains sometimes. On Monday I never, ever dreamed she would be able to stand up in the new braces. On Friday she was ready to walk out the door!

The thing I love most is the miracles they have everyday in physio. It truly is a miracle that occurs when a paraplegic walks across the room in their calipers with a walker, or someone with ALS kicks the ball a little stronger, or a quadraplegic takes his first steps in calipers in over nine years, or a quadraplegic be able to move his thumb for the first time. I think that is why I am doing great. It is a positive inspirational place to be and you feel everyone from the patients, to the doctors, to the physio people, to the nurses, to the people that work at the front desk are behind the patient wanting them to succeed. I so wish that everyone could see what I see everyday. I do the "happy" dance all the time to celebrate each accomplishment with my new friends.

Monica's doctors - Dr. Shroff, Dr. Ashish, and Dr. Sudeep - all believe that Monica has something bigger than just the Lyme. They, nor in their research, have not been able to find anyone like her. Dr. Ashish agreed that no doctor in the world probably has seen a patient like Monica before. He said she is exactly like a paralyzed person. Monica's eyesight is still blurry and her swallowing is constricted, but like the fighter she is she has adapted and soldiers on. The doctors are truly amazed by her coping skills and adaptability along with her very positive attitude. I am so happy being here because I finally found my doctor "House" I've been looking for all this time. I have two brilliant minds trying to figure it out. Dr. Ashish even said that he and Dr. Shroff are debating about what Monica has and discussing ways to fix it. Dr. Sudeep we have the closest relationship with because he is here twelve hours per day, six days per week. He has a very good rapore with Monica - he really listens to everything she has to say, knows how to make her laugh, and can explain everything happening to her in metaphors which helps both of us understand. The three doctors have a very close relationship working together and it is exciting to see such team work - after all this time, I finally found our doctor "House" in three very dedicated doctors brainstorming and working towards a solution for my girl!

I am volunteering about 40 hours per week and loving it. I am writing a Welcome Packet for the hospital to give to each patient when they arrive. I love doing this type of work and am good at the details. I started and thought it would be a small packet and now I am up to about 30 pages. There are so many questions when you get here and so much information passed to each other is incorrect. I thought having it all down in a packet would eliminate a lot of griping. The griping is because no patient really knows what is going on. I believe the hospital is going through growing pains. They have policies and procedures but none are written down for us. I took a cold shower for ten days because I could never figure out how to get my solar powered shower hot. You turn the handle to the middle - wait a long time for it to warm up - then turn the handle to the left. Basic stuff but you have to know it. I am getting complete freedom to create things - forms, etc. to help out. I am even trying to figure out being a tourist and how to recommend places for people to see in the packet. It touches on all areas and I am beginning to understand how the hospital works and it's limitations due to culture and customs.

Working has been very good because it gives me time away from Monica (I work in the common room on the hospital's computer) and this has helped her develop independence. The nurses are supportive of me leaving her alone in her room or going out for a walk or being with another caregiver. Monica has a buzzer she can push if she needs something or if there is an emergency. I have been too afraid for the past two years to leave her alone. I will always let her play with a friend (I can do a chore then) or be with her dad or the boys, but I have had very few moments where I am "off" and not thinking about her. Being here has been such a gift to me because I am able to find a better balance and show her that I am a well-rounded, complex, social person. I believe my family has forgotten who I really am, but here I feel that the "net" is there to catch either one of us if we fall.

It took sometime but we now have a group of people playing nightly games of Rummikub in the common room with Monica. I keep going out to buy new games to see if I can keep them all interested and we bring snacks too. We have quads and paras playing. Rummikub continues to be everyone's favorite. We even got Dr. Sudeep to play one evening and he had a great time. He was so impressed with Monica's ability to process the math and logically develop strategic plays. Her brain has always been very good at math. Therefore, it is hard to comprehend that she cannot remember a paragraph she just read. Rummikub has been a great game to create a sense of community and everyone has become such good friends through laughter.

This is exactly where we should be; I feel it and want it so badly for Monica. It is going to happen!

On a Different Note

2009-10-18T10:32:00.000-07:00

Yesterday a friend messaged me on Facebook one of the most amazing messages I have ever read. She and I don't know each other very well, and have only talked a couple times through mutual friends. My friend has known since she met me that I am sick, but she never knew to what extent I am sick until reading my blog. When I checked my Facebook this afternoon I was surprised she had left me a message. I would love to share the message with everyone (with her permission of course) and tell you why it meant so much to me. This what she messaged me saying:

hi monica,
i know we never have been that close and i've only talked to you a few times back at blach, but today i read your blog on your trip to india, and it seriously moved me to tears. i knew that you were sick, but i never new the extent of what you were going through. reading about the symptoms you are going through and all the procedures you are having makes me so thankful for my health, but at the same time i wish i could do something to make you healthy. i just want you to know that i hope you are doing well, and my prayers are with you.

After reading this I was at a loss for words. To tell you the truth it almost made me cry. People have always told me that my story affects others, but others had never told me it affected them so I never really believed them. She finally told me. I hope that when you get a little glimpse of everything I go through on a daily basis, you realize your how precious your health really is. Your health is the one thing of everything around you to not take for granted, for everything can change in a second. I used to take it for granted, I admit that. I used to think I was invincible like I could never get sick. You have to remember that everything can slip away in a moment, so appreciate what you have because there are people out there who don't have the things you have. I want to thank you all for following my blog and reading about what I go through. I know you will never fully understand what I am going through and how hard it is, but you know it is there. It's hard to share with everyone what I have to deal with because I don't want to be classified as the girl who is sick. Thank you for giving me the time to do it, and actually listen (or read).

Some people comment on my positive attitude about it all. The truth is I'm scared out of my mind of the unknown thing that has attacked and taken over my body. Even though it's scary, it's the cards I was dealt and I decided I'm not going to dwell and complain about it. I'm going to live as best I can and whatever I can't do I know I have people behind me who will make it possible for me to do it. I will never get better if I constantly am telling myself I am stuck with this the rest of my life. Even if I am stuck with this the rest of my life, I'm still going to be out there making the best of it. You only get to live once :)

By the way we hit our month mark, we have officially been here a month and if we don't change our date should be home in a month too!

Rummikub

2009-10-14T10:03:00.000-07:00

Rummikub is a game played with little tiles and the goal is to get rid of all of your tiles first. Your first move has to equal a total of 30 points (it's fairly difficult) and after you get your 30 you start working to get rid of all your other tiles. To get rid of tiles you put them down in either a sequence of the same color (a blue five, six, seven) or in three or four of a kind that are multicolored (a yellow, red, blue, and black thirteen). I have grown up playing this game, maybe since I was seven or eight, and it's always been one of my families favorite games to play together. Well my mom brought it with us to India to play when we get bored. Good thing she brought it because now every night, it's becoming a ritual, a couple of the patients all sit around a table in the recreation room and play. I originally was the only one who knew how to play, but I've taught around six or seven people how to play. We all go down usually after dinner comes (whatever time that may be) and play for a couple hours. The only bad part is you can only play with four people at a time so sometimes someone gets left out, but they still watch and help out when they see a move. It's really fun to play with everyone because it gives us all something to do, keeps our brains going, and let's us have fun and get to know each other better. I love going down and hanging out for a couple hours talking, laughing, and just having fun. It definitely helps to keep your mind off of some upcoming procedure that you are nervous about, but it's also a good time to ask all questions you have about the procedure. We get pretty side tracked in talking about stuff that we forget who's turn it is quite often. Our rules are somewhat more lenient than the real rules because we like to have everyone to be able to play equally so we'll start swapping tiles to help someone get their thirty. Playing Rummikub with everyone helps me not worry about the treatment and keeps things light which is always good.

2009-10-12T02:33:00.000-07:00

I've really only written about the good changes that have been happening, but to get the good changes you have to go through the bad ones. After my first procedure, the caudal, I had problems swallowing for four days. I quit eating and it was extremely difficult to drink anything. On the fourth day though everything went back to normal and I didn't have any other problems with swallowing until my second procedure, the epidural. Since finishing my epidural procedure I've been having difficulties swallowing again, but this time I know how important it is to eat and drink regularly so I am forcing myself to eat and drink as much as possible. The doctor checked out my neck and throat this morning and said my tonsil is enlarged (they are already massive) so he gave me antibiotics and we are hoping it will go back to it's normal size soon. My neck is also a little swollen right now, which isn't fun and could be contributing to why it's hard to swallow. Also since my epidural procedure my vision has been worse than usual. It's a lot more blurry than usual (which I've said in a previous post), but hopefully soon it'll start clearing up. We tried doing stem cell eye drops to see if it would do anything and so far no results, but they say it can take some time. Yesterday I wrote about in the post before this was not a very good day. Overheating, blurry vision, and difficulty swallowing definitely don't make your day very enjoyable. t really showed me that this isn't going to be easy, it's going to be REALLY hard, but I have to push through it if I want to get to my ultimate goal of being healthy again.I'm going to have to deal with the bad things that come up and think about the positive benefits from it instead of dwelling on the negatives. It's going to take a long time, but I know this is the place I need to be and it's worth every penny.

Akshardham

2009-10-11T09:50:00.000-07:00

Sunday is the off day around here, we get to sleep in! No physio, only injections in the morning and at night, the doctors all get their day off, and only a couple sisters have to work. My mom and I were woken up around 9 because the "Sunday" doctor wanted to meet with us to check on one thing, then we fell back asleep and finally got up around 11:30. We think I somehow managed to overheat myself by having my shower to hot and there not being any ventilation in the bathroom. My head was going in circles and I couldn't function at all. I turned the air conditioner on as high as it goes and at the lowest temperature. On top of that I turned the fan on the highest speed trying to cool myself down. After lying down for about ten minutes I realized it wasn't helping at all, so I went back into the bathroom and took a cold shower. When I was done with my shower my head wasn't spinning as much, but I definitely still wasn't doing good. It took around two hours to cool me back down. My mom and I had planned on going to a temple called Akshardham, a highly recommended place to go by one of my doctors, with Gabe (a quadriplegic who is around my age) his dad, Matthew and another patients parents that afternoon and I really wanted to go. It was about 2:30 and I still wasn't doing that great, but I was determined to go. My mom had a sister check my vitals, and she gave me clearance to go. Even though I wasn't a hundred percent I decided I wanted to go.
I am SOO glad I pushed through it and went. It was one of the most spectacular places I have ever seen. All six of us got the "royal treatment." Everything thing there was handicap accessible which is quite the change. Not many places around here are handicap accessible, there is always at least one or two stairs that we have to get over. We got an English speaking guide to walk around with us and tell us about the history and facts about the temple. IMAX theaters are not my favorite at all, especially when the movie is in a different language. They gave us headphones that were supposed to translate everything into English, but it was way too hard to keep up with. After watching the IMAX movie about the story behind the temple we went on a boat ride that totally reminded us of Disneyland's "It's a Small World." The boat ride told us all about the history of India and was interesting if you forgot the fact you felt like you were right at Disneyland. Once we got off the boats, which went smoother than expected considering Gabe and I both had to be transferred out of our chairs into the boat, our guide took us to watch a musical light show. It was incredible. The light show told the story of the yogi, Swaminarayan, whom the temple is dedicated to, and was better than I had expected. There were probably around 10,000 people watching the light show along with us. We got front row seats on a little ledge that looked dead center over all the fountains, the perfect seats. Our guide then took us into a room, the prayer and wishes room, and we got bracelets tied to our right wrists that mean good luck. The most interesting part of the room was when we were each handed a little cup of Ganga water to poor over a statue of the child yogi. While you were slowly pouring the water over the statue (I had my mom do it for me because I couldn't stand) you are supposed to make a wish. It was a experience I won't forget anytime soon, and I am so glad that I pushed myself to go. The bad part of it all was that we weren't allowed to bring our cameras in so I will put up a picture that I found off the Internet to give you an idea of what we saw.

Epidural Procedure

2009-10-08T09:54:00.000-07:00

When you hear epidural you think about someone having a baby, no I'm not having a baby, even though I have MILLIONS of little baby stem cells inside of me trying to repair my body. Most people don't realize that in a pregnancy an epidural is just a type of medicine that goes around your spinal cord that makes you numb from the waist down or from where ever they inject it. Well an epidural procedure is along those same lines, except they inject stem cells around your spinal cord rather than a medicine to numb the lower half of your body. The epidural is the layer that surrounds the spinal cord.

I have a lot of anxiety in doing procedures because I am deathly afraid of getting pain again, but it's the one thing I would love to have again. Confusing I know. A little while after arriving at the other hospital called Guatam Nagar, I got an IV and took two antibiotics. The doctor that was doing the procedure decided it would be best if I moved times with someone else who was scheduled ahead of me to try and calm me down and get it over with. About an hour later I was called in for the procedure. I was put onto a stretcher and pushed into an old school elevator, the kind that you have to close the gates and you can see through them, with one of the sisters and two guys who work in the procedure room, one of them is named Opi. The whole thing went really smoothly, I didn't freak out this time thank goodness. The doctor injected around 50 MILLION stem cells into my back during that 15 or so minute procedure. Crazy. They then helped me back onto the stretcher and took me back up to my room. One of my favorite people working here, Opi, was helping with the procedure, and he was making sure I was okay throughout the procedure and he helped me get back into my bed. I brought five stuffed animals to India with me, and my mom packed all of them with us when we went to the other hospital for the procedure. She lined them all up along the end of my bed and the sisters (nurses) and Opi thought it was the cutest thing they had ever seen. He actually before he helped me into my bed, sat on the far end of my bed to take a picture on his phone of all my stuffed animals, it was the cutest thing I've ever seen. After getting back in bed they brought in the two bricks again and raised up the bed. Opi then moved all the stuffed animals from the end of my bed and placed them all around my head so I could hold them.

Towards the end of the procedure a friend visited, a gecko. As I was watching television, getting really restless for being on my back for so long, all of a sudden I saw this little thing dart through the window onto the wall. I looked over and said "Mom, we have a friend!" She looked over and asked me okay so where is it and what is it. I pointed over to the wall and she saw the gecko and right away got out her camera to take pictures of it. He stayed there til we left.

Since the procedure I've shown really good results :)! I got a couple side effects from it, which in a really twisted way is fantastic. Swallowing is really, really difficult (it's a previous symptom) and my vision is much more blurry than it usually is (I have no idea what that means). Right after getting out of bed, after lying on my back for five hours, I had a temperature (which is your bodies defense to all the stem cells and is normal) and I was getting really bad tremors that have slowly calmed down a little bit. My doctors are really, really excited for all the progress I'm making and are convinced I will go home completely changed. All I can do is believe them and give it a 110% by thinking positively, having a good attitude about everything, doing physio everyday, and doing yoga (no matter how much I hate it).

Elephant Ride

2009-10-08T04:35:00.000-07:00

This one is a little late, but about a week and a half ago five patients and their caretakers all went on an elephant ride :). We all piled into taxis, I think we had to take four to fit all the wheelchairs and everyone. My mom and I went in a car with another patient around my age and his dad as we were driving down the highway the driver suddenly pulled over to the edge of the road. Before we could say anything our driver started going in reverse on the highway into straight on traffic of motorcycles, rickshaws, and cars. On the side of the road were six elephants all lined up ready to go. We pulled into this itty bitty little driveway that could barely fit the car and got out. Somehow my mom and I got volunteered to go first so after everyone was out these guys started pointing at us telling us to "go go go." Next thing I know, I'm getting hoisted onto this elephant by five Indian men. I was still in shock that I was sitting on an elephant and that we were actually about to do this. My mom got on after me and I was told to hold onto the "Elephant man" who tells the elephant where to go. After tying us together my mom said she was ready to go. She had told me the elephant got up front feet first, then back. I think she forgot that because when the guy commanded the elephant to get up she screamed. Once the elephant was up we went along this trail and saw a couple little huts down in this super lush area. It was so pretty, I wish we had taken our camera out there instead of giving it to someone at the front to take our pictures. When we got back to where we had gotten on, the same five men helped me back off into my chair and we then waited for everyone else to go. I was definitely in shock the rest of the time that I had just ridden an elephant. After us a quadriplegic rode the elephant with a caretaker, which was amazing to watch how brave she was and trusting she was of everyone to do that. Then another person with Lyme induced ALS went with a caretaker. After he went the two mothers of them went and we got the funniest picture of their reaction as the elephant was rising. It sure was a fun day. I'm still kind of in shock that I actually rode an elephant in that sketchy of an area, but it was an experience that would probably only happen here in India.

HOPE

2009-10-05T23:18:00.000-07:00

Hope is a wonderful thing. It pushes me forward to reach deep into my soul and find a purpose and new direction for the future. It is a guiding light and keeps me positive and optimistic. With hope your world is big; without hope it becomes very small. I always try to find hope in every situation. Therefore, it has made it possible for this journey to find healing for Monica. I ALWAYS knew that there was a person "out there in the world" that I HAD to find that could bring wellness to my daughter. I just knew deep to my core that if we found that right person it would all come together. That is why we spent every day "doctoring" pursing an answer. As you can tell from Monica's blogs our hopes and dreams are slowly becoming a reality. We came here hoping for one visible change.

So far in three weeks Monica has surpassed all of our expectations. Monica now sweats (I know how much we all hate to sweat and smell, but it is a critical function of our bodies and keeps us well) and she has not done this for about one and 1/2 years. Monica now sleeps an average of seven or eight hours per night (not jet lag, but real sleep) and has not done that for over 3 years. Monica now can stand up in physical therapy with calipers (metal braces) for a few minutes (but is very wobbily because her core and legs have atrophied) and has not stood for over seven months. Monica now can walk in physical therapy with calipers for a few minutes on the parallel bar ramp (yesterday she learned the moon walk) and again has not walked in over seven months. Her dismount is a crack up because she is in these full legged braces with several people helping her get back into her chair and then they take the calipers off. So you can see why HOPE makes all things possible. I also wear a couple of silver charms on a necklace that say: STRENGTH, LAUGH, FEAR LESS BREATHE MORE and HOPE.

Another reason for the title of this blog is that my brother's wife HOPE travelled with us to India to get us settled. Introducing Hope to the doctors and patients I always kinda joked that we are hopeful for the treatment and symbolically we even brought Hope with us. I am so fortunate that my brother married such an amazing woman! Before Monica got ill, I was lucky enough to work with the principal of my children's elementary school developing and implementing a character education program for each grade. I am always drawn to people by their character.

Hope has so many of the qualities and traits that form the individual nature I look for in a friend. She is responsible, patient, respectful, trustworthy, loyal, determined, optimistic, compassionate, dependable, adaptable, honest, has perseverance, displays gratitude and has a sense of peacefulness about her. She knew before I asked her to travel with us that it would be hard. Monica does not travel well - she has seizures, tremors and this time her hands froze into claws on the flight. Because of that I do not travel well and am so focused on making sure Monica is safe I get distracted easily. It was so comforting to know that she was a witness to our journey. It's amazing how much better I cope when I have a witness to my world and know that someone will be there if I fall. Getting supplies and just being a tourist is much easier with a third person. She made sure that I had all the comforts I needed before she left. I really wanted our room to be a cheerful, comfortable and welcoming room to be in. I wanted it to have a flavor of the country we now live in and make us feel like a "local" and not a visitor. We bought new towels and comforters and figured out how to decorate our walls. She helped me problem solve every situation to make sure that when she left we would be comfortable leaving our hospital and adventuring out in a wheelchair - honestly, as a visitor, the city looks like it has been bombed and they are rebuilding absolutely everything.

There is a slide show (that will be up soon) dedicated to her on the right hand side (future blogs will explain where we were and our experiences) and the sacrifices she made by staying with us and leaving her family (my nephews are six and ten years old). She really missed them, but stepped up and was present with us every moment. I am very grateful to have Hope in my life and as my friend. Thank you Hope for supporting us in this journey from the bottom of my heart.

One Step at a Time

2009-10-04T06:06:00.000-07:00

One step at a time is what they all say. When Dr. Shroff heard that I stood up for the first time she wanted to jump right into the next step, walking. The morning of September 30th, 2009 I took my first step all by myself for the first time in 176 days. I was in metal and plastic braces that go about half way up my back for support because my legs are still too weak, but I did it all by myself. My physio, Jaya, was behind me making sure I wasn't going to fall, and Dr. Shroff was in front teaching me how to walk. She told me to put one hand forward, swing my hips opposite whatever hand I moved, and then pull my leg forward. Dr. Shroff dedicated about a half hour, no interruptions or anything, solely to get me to walk. If she wasn't there or wasn't willing to do that, I probably wouldn't have been able to walk for a couple more weeks. Everyone in the room was completely shocked that I was able to do it, I myself was even shocked. i can't put it into words how incredible it was to stand up straight and actually walk. A patient who was in the physio room when I happened to be walking, rolled over to me later and joked that I was going to be jogging up and down the streets in no time. Everyday since then that I've had physio we have been practicing and each day I seem to be getting better. Hopefully by the time I leave Nu Tech I will be walking without braces.

Sorry it has been so difficult to keep this blog updated, but starting tomorrow there should be a new post everyday. We have been so busy lately that we haven't had time to keep the blog up to date, but we will catch you up on everything that has happened.

Procedure!

2009-09-27T10:43:00.000-07:00

Caudal Procedures... Not fun. The night before I did my first procedure the doctor casually told me while I was in a group of about fifteen people that I'd be doing a procedure tomorrow. I looked at him like "Wait, what EXPLAIN!" He told me that I would go upstairs for about 20 minutes get stem cell shots in my back then lay in bed for a couple hours. I had no idea what that meant exactly, but I knew to trust him so I said okay. Even though I'm numb I still want to know if something should hurt and if it should how painful should it be. Everyone was giving me different answers about it, saying well it hurts, but not that bad or along those lines. One person kept repeating over and over again that it was the most painful thing they have ever experienced. The rest of that night went fine, and I was supposed to start my procedure at 10 in the morning. I ended up going around 11:15ish. They hoisted me onto a table and the table was then lowered so my head was towards the ground, I felt like I was going to slide right off. Two nurses had to hold my legs down so I didn't slide around. The doctor then took a needle and went to the very bottom of my spinal cord and shoved the needle right on in. He then injected three doses of the stem cells in through that needle. It took about twenty minutes to do the whole thing, roll me in, get me on the bed, do the shots, and get me back off the bed and into my own room. I had to lay flat on my back and the elevator here isn't big enough to hold a stretcher so two men had to hold each end and carry me down the stairs that way. That was so scary I could have sworn I was starting to tip. They got me into my room and transferred me back in my bed. Then came the best part of all of it. They lifted the bottom of my bed up and stuck two bricks under each leg to keep me at an angle. Nobody really told me how long I was supposed to lay on my back for, but my nurse said five hours (others have said four.) I tried to rest for about an hour or two, but then I "woke up" and wanted to move and do something. I then watched old episodes of Melrose place for two hours, and after that got SUPER bored and restless. After finally being told I could move I got out of the room so fast and went down to the lobby to just hang out. The worst part of the Caudal Procedure was that I psyched myself out when they were giving me the injections all because I was imaging what that one person was saying about how it was the most painful thing. I was freaking out because the last thing I wanted was to suddenly feel the most pain ever, and I didn't stop to think about all of it. That one little thought wouldn't leave my mind and I was suddenly getting flashbacks of all the pain I have experienced and that is the last thing I would ever want, to have all that pain again. I've learned from that one experience that no matter how much pain it will take, I am going to do it to get myself well. I'd do anything to be healthy again so pain I guess isn't that much of a deal. I will never fully understand why I freaked out so much, but now I know.

Ruins Bring Good News?

2009-09-25T11:28:00.000-07:00

We had been wandering around Haus Khaz Village for about an hour or so when we reached the end of a road and found some Ruins. They were built in 1354 and are so gorgeous. It's amazing how people are allowed to just wander and walk all over these ruins when back home everything would be fenced off and you wouldn't be allowed near really. There was this one wall that I transferred out of my chair to get onto to take pictures. The wall I was sitting on overlooked a man-made lake and you could see all of the ruins from where I was. It was right there, on September 18Th around 1 PM, we discovered something absolutely amazing. I sweat. We didn't quite know how to react, three or four little strips of sweat on my lower back. I thought I had sweat the day before, but we didn't know for sure because I took my shirt in with me when I showered and the shower goes EVERYWHERE in the bathroom so my mom, my aunt, and I just thought I got it wet from the shower. At those ruins it was confirmed, it was truly sweat. Since going numb I quit sweating, it's been a little over a year and a half that I last sweat and suddenly sitting on this wall overlooking these beautiful ruins we discover I've sweat. It's a moment I will never forget. The most ironic part of it though is, I absolutely hate sweat, I think it is the MOST disgusting thing ever and to think it's the first change I have is pretty funny to me. That change came on my third shot into treatment. As soon as we got back we ran into the doctor's office and told him and he was SOOOO happy. He looked me straight in the eye and said wow, it really is sweat. Then he went on to say they had NO IDEA what my first symptom to come back would be. He didn't really know what else to say. He truly believes this is the treatment, and you can tell he means it. This is it, from here you can only get better especially with your attitude and your support system he said. From talking to him I knew I was in for the ride of my life while being here, and I will survive and beat whatever has taken over my body. I will become me again, just from that one little thing everything made sense. Each day since then I've sweat a little bit more and in more places. Now a part of my face sweats, my chest sweats, and my back does :)

Monica's Health Last Week

2009-09-24T09:53:00.000-07:00

Monica was a "normal," active, healthy girl before April 2006. Her only doctor appointments were for her checkups. During the past three and a half years Monica has seen over seventy-five doctors (Western and Alternative medicine) trying to diagnose or improve her condition. Her illness has been progressive and we have had very limited positive results with any treatments we have tried (temporary painful lower back feeling in Germany - doing the Bionic 880). A big part of the difficulty in treating her is that she is numb and does not have a feedback loop to tell us pain or improvements unless they are very obvious like regaining her vision or the ability to walk. We can only judge improvements based on lab results. Monica has received a diagnosis of Lyme with the co-infections of Bartonella, Babesia, Erlichia, Mycoplasma, and Sensory "Neuronopathy." However, no one has ever seen symptoms like hers before - Monica is completely numb from her head to her toes and cannot feel her muscles, bones, or internal organs. She has no sensation in her whole body: pressure, touch, temperature, or proprioception (where you are in space). Monica has to visually look at a body part to make it move. More than one doctor has stated, "No doctor will probably ever see a patient like this in their lifetime." Her condition is considered incurable and probably terminal based on her progression.

Current Discernible Symptoms

Legs do not bear weight- cannot stand - in a wheelchair as of April
Numbness - whole body inside and out - she has to see a body part to make it move. Progression started in February 2007 and ended in May 2008
No taste
No smell
Vision is vertical in the left eye and blurry in both
Loses hearing periodically throughout the day
Cognitively: poor short term memory, unable to concentrate, difficulty thinking, difficulty reading (vision a factor), sequencing problems, disoriented sometimes, forgetfulness (cannot do school work)
Does not sweat
Muscle twitching / body tremors / seizures
Insomnia - sleeps three or four hours
Daily reflux - sometimes vomits
Vocal sounds are weaker
Goes to the bathroom on a schedule
Eats and drinks on a schedule
Feels detached / amputated from her body - her eyes are floating in space

Symptoms Monica displayed before going numb or losing ability to walk

Pain: chest, ribs, migraines / headaches, right wrist, both knees, abdominal pain / spasms, lower back (all pain disappeared when she went numb)
Right leg scissor gait
Both knees hyper-extend
Right foot drags
Body temperature not regulating normally
Balance off
Hiccups turn into burps for 20 minute increments
Gallbladder stones /sludge (antibiotic induced) - emergency room
Constipation pain - emergency room
Hips: Red stretch marks - currently white from Bartonella
Leaky gut syndrome
Nutritional deficiencies
Toxic load: heavy metals, petrochemicals, food, water and medicine ingested
What else . . . . . . . ?

Last visible change was when she lost her ability to walk in April.

In my next blog update I will let you know her amazing improvements already!

Ambulance Ride!

2009-09-23T09:47:00.000-07:00

My first ambulance ride, and it sure was a crazy one. Two days after we got there I needed to do another test called a SPECT scan. We originally were going to take a taxi, but there was an emergency so they needed to push our appointment back until later that night, little did we know that would also mean going in an ambulance. From reading previous blogs and through talking to people we were told to put me in the front with a seat belt instead of on the stretcher. My mom was on the stretcher for the ride over and my Aunt was sitting next to here practically holding the wheelchair while I was in the front. The funniest part was I didn't even have a working seat belt in the front seat so it was kind of useless. In the states if you see an ambulance it's required by law I think to move to the right and let them pass, yeah that law doesn't apply here. We were treated just like a regular car is. About three or four doors up the street from the place I did my scan is just a community garbage dump, and the place we went to was nice. I waited about ten or twenty minutes for them to prepare the dye that was needed for the correct test results. It was a nuclear medicine that crosses the blood brain barrier to figure out how the blood flows through your brain. After the injection I was supposed to wait for about an hour to let the medicine flow through before they could start the test, I fell asleep within ten minutes of being put on the gurney. The test went by pretty fast and wasn't as loud as the MRI's, but I was pretty sleepy during the SPECT so I don't think I noticed as much. Once I was done, we got back into our ambulance and drove home. You could see the reflection in other cars and we could tell the siren light was on, but of course nobody moved or anything. The ride was pretty smooth, but it was such a different feel from ambulance rides (from what I've heard) in the states because nobody moves or anything for you. We got the results on Monday and they came back abnormal which my mom, my aunt, and I all celebrated about. Yeah I know that it's twisted, but we were very excited a test showed something is wrong with me.

Tests, Tests, and More Tests

2009-09-21T09:42:00.000-07:00

Nine hours after landing in New Delhi and I was already on my way to the GMR Institute of Imaging & Research to do eight tests. Home in California it would take a couple weeks AT LEAST to get just one of these tests done, and we were on our way within nine hours of arriving?! How crazy is that? As soon as we walked in the door they started the tests pretty much right away. They put me on a gurney and almost immediately wheeled me into a room to start the MRI's. The first trip to the MRI machine I did an MRI on my brain, my cervical spine, my dorsal spine, and my lumbar spine. The machine was SOOO LOUD, I can't even come up with something to compare the noise too, and I live with a brother who has a garage band who plays metal music. After about five minutes of being in the machine I started coming up with words that seemed to match the sounds it was making (backpack backpack backpack, partay partay partay, blub blub blub, etc.) Once those four MRI's were done I got back on my gurney and all of a sudden I was being wheeled out into the parking lot to a back hall around the side of the building to do a E.K.G. My mom and Hope were in such shock that I was being wheeled out that we just looked at each other and started laughing and waved. They didn't get their cameras out fast enough because they weren't expecting it so Hope got a picture that looks like I'm going into a morgue. My mom and I then went in this little itty bitty room to get the E.K.G. Where I put on a gown and instead of using electrodes they used these "martian looking little suction cups" and clamped my wrists and ankles and completed the test. I was pretty much totally exposed to about five people (four men and one woman) who spoke no English while they did the test. It wasn't a big deal to them like it is to us because it's just their job and they think nothing of it, it's common. After the E.K.G. I was rolled back into the office to go take a chest X-ray which the only difference from back home is I had nothing protecting me from the radiation. When the chest X-ray was done I got back onto my gurney (again) and they had me do ANOTHER MRI on my whole back (cervical, dorsal, and lumbar) which was just as loud and I am very surprised I can even still hear. Getting back onto my gurney (yet again) I was wheeled back through the parking lot again (this time they got pictures) and Hope came with me to do an Echo cardiogram in another back little itty bitty room. The door could barely open all the way to get me inside because I was still on the gurney. Once the Echo cardiogram was finished I was rolled back inside and changed out of my gown in the X-ray room. Two and a half hours later we had completed five MRI's, a chest X-Ray, an Echo cardiogram, and an E.K.G. all of which would've taken probably around two months to get back in the states. The most amazing part of all of it (which really explains why there is so much medical tourism now a days) it cost 14,550 Rupees which is the equivalent to about $300. Each test back in California costs thousands of dollars and to get all eight of these tests done for about $300 dollars is incredible. When my mom got the receipt she turned to Hope and said "Okay, so is there anything you need to get scanned/tested?" Even though we had already done all of these tests back in the states the doctor wanted all updated ones and everything. The tests all came back normal, which wasn't a surprise, and the staff there started asking me questions like "Okay, so why are you here?" That was only one part of our first day in New Delhi, India.

Travel Day

2009-09-19T23:54:00.000-07:00

From the time we left our house around 6:30 PM on Monday September 14, 2009 to the time we arrived at our room in New Delhi, India, we had been traveling for about 27 hours. Not being able to walk makes traveling a little more interesting than usual. Wheelchairs don't really fit in the alleys of an airplane so they have a special chair you have to transfer into for them to wheel you to your seat. During take off and landings my body freaks out and I get EXTREMELY bad tremors and seizures. One lady in a chair behind stuck her head around the corner (I was in an aisle seat) and asked me with attitude "okay, is your chair broken or something?" I couldn't respond, but my mom looked over and told the lady sorry but she's having seizures. The lady then was super apologetic and trying to be nice, so that was kind of aggravating. Everyone around me was constantly starring though. When we landed in Munich, Germany we had a three hour layover and got shuttled around because we are handicapped. We went through our own special customs and security instead of through the lines with the wheelchair. I slept through most of the flight from Munich to New Delhi which was REALLY good. At 7:00 AM our taxi driver was waiting for us, but he didn't have a big enough taxi to fit Hope, my mom, and I plus all of our luggage and the wheelchair so he had to get someone else to take all of our luggage in a different car. The ride to the hospital was for sure an experience I'll never forget. I can't believe how there aren't as many accidents as you would think there would be here, just in that half hour taxi ride I knew there were MANY new experiences to come.

FINALLY! A blog :)

2009-09-19T21:51:00.000-07:00

Day 5 in India: It's taken a couple days to get this up and running, but we did actually make it here. I guess we are just on "India time." We are staying in a "nursing home" called Nu Tech Mediworld in the Green Park Extension of South New Delhi, India. There are twenty in-patient rooms here, but so far we have met around ten people from all around the world, and the states. They are from Iceland, New Zealand, Australia, Minneapolis, Seattle, Las Vegas, and of all places, Mountain View. We have been doing A LOT since getting here on Wednesday morning, and I will post separate blogs explaining in more detail what we've been doing each day. Our plan is to be here for at least two months, and we will try are hardest to keep you updated with everything. Thank you for all of your support, and I hope you enjoy reading about our adventure.