"Family Dinner"

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

Celebration

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

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

Busy, Busy, Busy

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

Group Walk

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

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

Cricket

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

The Past Couple Days

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!