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

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

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

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

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

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!

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.