Room 204

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

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

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

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

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

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

Occupational Therapy

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

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

"Family Dinner"

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.