Migraine

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

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

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

The doctors are so convinced that I told them that they better have documented who she is and how she has gotten to this point before the sensation returns. We laughed because I said I could go back upstairs and she could have feeling right then. I just really want them to have proof of her journey to prove to the world that human embryonic stem cells work. We talked about having an independent film crew come in and film. Unfortunately it is not just what a doctor can say and therefore have it believed, you have to have outside third parties to verify evidence. You cannot use another medical doctor or test as proof because it becomes questionable even though there is no relationship. I believe, in her practice everything is subject to disbelief and questioning because it is a new scientific frontier she and her patients are creating. I have witnessed the miracle that science has created in several of the patients here and with Monica being able to walk and sweat again.

They asked me if people knew about Monica and her disease. I said I haven't been willing to go out and publicize our situation. A lot of our friends at NuTech have gone out and done newspaper articles, community outreach, etc. because they were fundraising. I haven't had the time or energy to coordinate a fundraiser yet and therefore have not publicized our story. I said I have a story, but it is still a sad story and I want to go out with the happy ending. I told them I've looked up Oprah's website and I have 1,000 words. The story we have is not the story we are ready to tell. I told them that you get my daughter back to "normal" THEN we have a huge story - walking isn't enough. Then I will write Oprah, CNN, People Magazine, write a book, etc. to tell the world about human embryonic stem cells and my girl. In one way I want to do that today to try to find someone else like her, but I much rather publicize our success and let that individual know they have hope for a cure as it cured my child.

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

Physio for Sensation

I am having a difficult time formatting my blogs and getting them posted. I guess I want to be more creative than the "blog" will allow me. Frustrating and I don't know Html to fix the problems I create. Therefore you are receiving posts now not how I purposely have designed them and with some grammatical errors. I get stuck and post it in a panic and then am locked out of trying to correct my errors. Since time is of the essence .... this is what you get for now. I am approaching this as something is better than nothing.

Monica has been hard at work noticing different sensations around her. She has to pay attention to what sense she is using and think about what she remembered that sensation used to be like. She is doing this in her everyday life here, but during her physio they have about ten different items they are using to try and trigger a feeling.

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

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

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

Wishing with all my heart ...

Patients

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

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!

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

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

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

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?

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?

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

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

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

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!

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

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

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

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

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.