The Past Couple Days

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!

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

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

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.

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).