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Week 8: April 21 - 27
April 21, 2008
A good night of rest, maybe from the long day that I had yesterday. Same routine as always, wake up, shower, traffic jam, PT. PT was fun today! I was the first one in the physio room as always until 9:15 when Shawn showed up, then 9:30 for Louis. I did my normal routine of stretches, balancing, and walking in the walker.
After PT a group of us decided to go out for lunch. I arranged for the taxi. When we all got down to the lobby, they had sent our taxi away. The receptionist had to call for another one. We waited and waited for another taxi to show, when it finally did, it was too small for all of us. I made the plan to have Jacque, Julie, and Scott ride in the taxi with my wheelchair, and Elaine and I would take a Tuc-Tuc. That planned failed, so it ended up being only the girls who went to lunch. We piled into the taxi (it is now 98 degrees here) it was too hot for us to sit on lap’s so I sat on the floor. After lunch we went to McDonald’s for ice cream.
We arrived at the hospital just in time for PT. Elaine and I had PT at the same time today. She got to watch me walk in my boots. I had talked Shivani into allowing me to wear my boots to walk, I told her I walked better in my cowboy boots. I struggled on my sidestepping, but walked very far and my steps were much stronger. My hip muscles and back muscles are much stronger, which also helps with my posture. It is getting so much better, I no longer struggle to hold myself up, and it feels great. I had felt so normal in my walking a few weeks ago, but lately it is getting to be a better feeling.
After PT we only had 30 minutes to goof around before Elaine and I had to go to yoga. We were cornered on our way out, by the sister’s to take our vitals. We made quit an entrance, with Elaine on my lap we barged in like we owned the place. The Yoga Man, asked us why we were so late, we told him it was because the sisters stopped us. Scott was already in Yoga, and when we were told to do the “Cow” pose, I looked up at him to see if he had it, and he did, much better than the first day! GOOD JOB SCOTT!
After Yoga, and all of the important stuff was out of the way, it was finally relax time! Elaine and I camped out in my room and watched trash TV. After pigging out on popcorn, we ordered Pizza. We were sent the wrong pizza, we asked for cheese and we got veg. Who puts corn on pizza? UMMM YEA-why do I seem surprised? An hour of explaining to the reception guy what we really wanted, we finally got the right pizza….plain cheese pizza is the safest way to go!
Very restless night for me. Not going to be a positive outcome for the next day!
April 22, 2008
Oh yes, no sleep! I tossed and turned all night, until 4am, and woke up at 7am. I am not sure why I am not sleeping well, but it is making me exhausted for PT. I forced myself out of bed and, into PT. I avoided being way late, by ditching the sisters and my vitals. In PT we did our normal routine again. My steps are getting better day by day. My sidestepping….not so much! It is the hardest thing I have to do in PT.
After PT, I came up to my room, ate some Lucky Charms (thank you Papa), and fell asleep. I woke up when lunch came but I was still so tired that I could not eat, and just kept sleeping. Finally time for PT, but I still was too tired to get up and go. Scott went to tell Shivani that I was not going to make it. I slept for five hours today. 3pm, I finally was able to function. I checked some emails and finished up my blogs.
Jacque is leaving, and our floor is sad. She is our little sunshine. We said our goodbye’s to here.
Scott is finally mingling with some of the other caregivers. I am so happy about that. Even though he is insisting that he is ONLY here for me, I want him to enjoy India too. I want him to remember it in a positive way!
Elaine and I camped out in Shawn’s room again. We made him a flower out of yarn. Elaine is teaching me to crochet, about ten minutes of that and I was bored out of my mind. Shawn was repeating everything I said, so I threatened to shave a leg if he didn’t stop. Well, he didn’t stop so he now has Elaine and my initials shaved into his leg. But, we did not stop there, we filled the bare spot in with Henna, and painted his toe nails blue. We are now getting the silent treatment. Despite the silent treatment, Elaine and I are still sitting in Shawn's room to bug him. HE loves it! While watching a movie a gecko climbed down the wall behind the TV. I wanted to catch it but it was too high, so we had Shawn's friend chasing it up the wall. He could not reach it either so he grabbed the IV pole and was trying to knock it off the wall. The sad little thing, I wanted to play with it, not hurt it! He ended up running away! Bored with Shawn ignoring us, we got the Henna back out and Elaine drew on his friends hand. He enjoyed the attention! He is very quiet, I am not sure what he thinks of us crazy, white American chicks!
I am hoping that despite the 5 hour nap I took today that I will still be able to fall asleep!
April 23, 2008
I finally got some rest last night. I woke up 10 minutes before PT, quickly, I put on some clothes and headed downstairs. I avoided the vitals again today because the sister’s were with another patient. During Physio, my legs were full of spasm’s with the stretching. When I stood up my posture was a lot better. Scott even commented on my posture, he said that it has improved since he has been here. I did not bring my boots with me this morning, so I used the foot things that they made with the caliper’s. I walk so much better with my boots on, Shivani noticed a big difference in my steps with the boots and with the caliper’s. Shawn was in PT with me again this morning, he is still not speaking to me.
I went up to check on Elaine, when I went upstairs. She had Physio shortly after me, so I went down with her to watch her PT. It is getting busy down there, at every hour.
When I came up to take a shower the little ward boy was in my room cleaning. I like to clean it first before him, because I only like him to do the floors. Not that he does a bad job, but I don’t like waiting in the room for him to finish. It is a lot less time that way!
Elaine and I have been trying to mend our situation with Shawn, it is killing me that he will not talk to me. I made some ramen noodles and camped out in his room until PT. Leah was not digging the food today so she had Danno come up for some ramen…that is everyone’s “comfort food”! Shawn and I were talking by typing on the computer. He still will not talk things thru, and it bothers me, I really don’t want him to be upset! Things are almost better with Shawn and I, but it is too late to be discussing our “issue!” I had to be in PT.
PT was very fun, I walked in my boots again, so much better than this morning! I did a lot of sidestepping, and weight shifting. Louis is making huge strides. This morning he stood up without the calipers, and took steps without them too. It was a very emotional time for his mom. She was so happy to see, it made me happy to see that, it made me happy that his mother was so emotional watching her son working so hard for his goal! It was so wonderful that she is here to experience that with him. She is very lucky! This afternoon he walked up some steps. That was amazing! He is gaining so quickly, I love it!
After PT Elaine and I climbed into the bed with Shawn, poor guy he is defenseless with us two! We watched Hannah Montana then went to Yoga.
After Yoga, we all hung out and relaxed until dinner. The days with Yoga we are all very exhausted, it makes for a very long day. Scott went with Danno to the gym. We ordered McDonald’s for dinner. Mr. David made Elaine and I place our own order, we think that he did that so if we mess up we can only blame ourselves. Smart man, that Mr. David. Our dinner, came with a “McDelivery” water bottle…score!
Shawn has finally forgiven us, but Elaine and I had to promise, No More Shenanigan’s! Scott went out with the boys to the “DISCO” (the bar). He enjoyed it very much. I am so happy that he is mingling!
April 24, 2008
I woke up after only three hours of sleep. My sleep pattern it all out of wack, and I am hating it very much. PT was slow this morning. I almost fell asleep while Shivani was stretching me, then we did knee standing. I have not done knee standing in a few days, but I have noticed a lot of improvements with my balance and strength. When I start to get tired my body starts to wobble, Shivani cut’s me off when that happens. Her and I would push me to keep kneeling, however, now that there are more patients we don’t have that much time to do that.
I went directly up to my room, after my injection, and passed out. I need to get some rest, even though I am not a big fan of napping during the day for fear that I will not sleep at night. Right now there are no other options, I will completely crash if I do not sleep. Scott went out to Green Park for some cookies and some other things while I slept. He was very sweet to have done that for me. I slept until lunch came, it was fried rice, I really like it. I ate almost all of my lunch, and barely had enough time to do anything before I had to go to PT. My cowboy boots were in Shawn’s room so I had to wait for him to open his door before I could retrieve them, I was a little late for PT. I did my normal routine of standing, walking in the walker, and sidestepping. I think that my side steps are improving, but Shivani is always telling me they are, “Just OK!” WHAT? Is she kidding me? She has no idea how hard I am trying to make those steps perfect. I think I need to improve on them outside of PT. They are driving me crazy. However, I did watch a video that Sonia had taken before she left, and since then they have improved dramatically, along with my forward and backward stepping. My posture is also so much better than it was a few weeks ago. This makes me so happy, I am so glad I can see the noticeable changes.
Elaine and I made sure we made it to TV time, that’s right, Hannah Montana! We had only time to watch the show then we had a meeting.
Dr. Shroff, and Dr. Ashish haven't had a meeting for all of the patients and families to meet, and discuss changes, or ask questions regarding stem cells, the treatments, etc. since last month, when Sonia was here. I guess I was unclear about today's meeting because Scott assumed I meant that he did not have to go, but that was after I mentioned last time I had only stayed for 15 minutes or so (I guess I neglected to mention I left early for PT that time and Sonia stayed to take notes, my bad). So I went down to the meeting with Julie and Elaine. The group had a discussion on all of the above topics, then the doctors went around asking us to speak about what we noticed in ourselves and some of our personal experiences with our procedures and such. It was an emotional time for all of us. Louis shared a song that he had written about his experiences, and life after his accident. It was an amazing song. His mother, and brother were also there. Everyone has family members with them, whether it be an uncle, a brother, mother, father, but someone from the family. I had Julie and Elaine, who remember, are here for Elaine's treatment. It was kind of sad to look around the room, and to see the family members emotional from this wonderful experience, that I am experiencing with friends. And while my friends are like family to me, and they do mean the world to me, it's just not the same. And I do feel bad they have taken time out of their own lives and away from their families to be with me. I wish my family could be here with me because I certainly miss them sharing these moments with me. But on a brighter note, I am thankful for the emails and constant phone calls, especially from my brother, Papa and Grandma, Uncle Bruce, Aunt Judy and my many friends who have stayed in contact with me to help me stay strong. And knowing that I have a whole town and surrounding community backing me, helps take away my negative emotions when I start feeling frustrated. Thank you to all of you who are supporting me!
My day was not over, however, I did feel the need to get out of the hospital. So, Elaine, Julie and I went to a market for some snacks, and in search of Dominos. It was a late night but it was worth it, I was exhausted and excited to sleep. Tomorrow I have a procedure. It is getting hot here, today it was 105 degrees, tonight in the 80's! WOW! And FYI, I am no longer homesick, I am getting sad to have to leave, actually wish I could stay one more month, but I know my Papa would not like that!
April 25, 2008
This morning I woke up really late, and I was not feeling well, so I had to skip PT. I was not wanting to skip PT because I only have today, half of a day tomorrow, and five days next week then I have to go home. I had a procedure today, it is an inner muscular injection so I will not have to leave the hospital, I will only have to go upstairs for the procedure. After I took a shower, I went out in the hall to meet the doctor and go to my procedure. However, the lift was broken, AGAIN. Thankfully Scott is here to carry me up. From the 2nd floor, he carried me to the 3rd floor. Opie, and some more of the sister’s were waiting for me. They pulled me into the operation theater on a hard hospital bed. In the doorway, above the door, (all of the doors) there is always a fan. It is so powerful it blew my gown above my head. I am not sure what the fan’s are for, but in every operating room the fan is powerful. There are fans in the elevators too, the fan is like a propeller, I always feel like I am going to take off.
My procedure, went well, I could watch the whole thing from the reflection off the light above me. Dr. Ashish was asking me about my progress, and how I felt about my trip here. I told him that I was pleased with the progress, and I know that it will take some time, but the progress that I have noticed is amazing already. My procedure went well, but I was to lay on my back for two hours with my legs propped up. The two hours ran into my PT, so I missed out on walking today. I did make it into yoga.
The rest of the day, after yoga was very relaxed. Elaine and I hung out and watched a movie. I was exhausted, my procedure completely wore me out. We had to get up early for PT because we are going to the TAJ MAHAL again tomorrow. This will be my second trip to the Taj, but it is worth it, it’s the Temple of Love!
April 26-27,2008
Today was a long day I had physio this morning at 8:30 because we are heading to the TAJ again for the weekend. Julie and Elaine are going along with Scott and i, Elaine’s physio has also been changed so that we can get an early start so that we can enjoy our weekend in Agra, and the pool. It’s time for a little R & R. Plus Scott needs to enjoy his adventure to India, which I think has gone way to quickly for him! I did a lot of walking, and my strength has improved again. They are coming so much easier.
We called for the same taxi driver who drove Sonia, Dianne and I to the TAJ the last time. His name is Ajay. I liked him, he was very helpful the last time when Sonia was so sick, he pushed me everywhere. He knew Agra very well and that helps as well. We are staying at the Trident, it has an outside pool which is awesome because it is now 105 degrees daily, to be able to swim will be very nice.
Our drive through Delhi was long. We left the hospital around 11 or so, and the traffic is hectic. About two hours out of Delhi. It was a fun ride though, we have enough room for all of us, and it is a great scenic ride for Scott, Julie and Elaine. They are getting to see all of the things that excited Sonia and I the first time travelling around India, such as; elephants, camels, the women working in the fields (105 degrees!), the random people bathing, etc.
We had to stop at the McDonald’s to eat, we had 40km to go but we were all very hungry, and I love this McDonald’s it is like one of the few places in India that is accessable. It is nice to go to a restroom that is not a hole in the ground! Not that I have tried…I have been fortunate enough to have avoided the hole’s! Julie was ready to leave us at the McDonald’s because it was extremely hot, and Elaine and I were having a photo session with Ronald McDonald! It was very entertaining.
Back into the car again, but only for about 30 minutes then we arrive in Agra. We checked into our hotel, and OMG, it was very nice to have a LARGE clean bed, a room that smelled nothing like a hospital, and of course the pool! Julie and Elaine took a nap while Scott and I lounged by the pool, and pretended we were in Mexico drinking Corona’s. However, he was drinking a beer, and Surprise surprise I was drinking coca-cola.
After the pool we had dinner. Scott was daring and ordered a hamburger..yes real beef. Where does the beef come from? Well India of course! YUMMY, Sacred COW! He said it tasted delicious. Umm, yea good for you bud, I am waiting for Papa to take me to get not so sacred cow! While Scott was making his phone call home, Elaine and I ran around the halls. Yes, we were excited! It was freedom, we were free no one to watch us, no one to force us back into our rooms at a certain time…..ooops I forgot about JULIE! She followed us as we ran down the halls, (ok Elaine ran, but she was pushing me). Seriously, the hall way was like 80 room lengths, and it went in a perfect square, so 80 rooms 4 times! Julie put us in lock down in our room, (Elaine and I were having a slumber party, Julie was enjoying her room alone!) Scott on the other hand, was having a hard time sleeping, they didn’t put door bells on the outside of the hotel rooms for decoration! He was right across the hall from us, but once he started ignoring us and our “ding dong ditch” we did finally turn on the cartoons and go to bed. The baby stem cells are making me young again! I’m Kidding, it was the only channel in English!
Early rise on Sunday. April 27, 2008
Elaine and I woke up at 6:30 am. We need to get an early start for the TAJ because it will be way too hot later. Julie was not feeling well this morning so Elaine, Scott, and I ate breakfast, then we were all off to the TAJ. On our way, Julie is sight seeing, and yells into the back of the car…”ooooh a camel- LOOK!” UH, hello Julie your in the front seat, why don’t you see the big a** elephant in front of you? She is delirious from being sick! We had Ajay pull over so that she could take a picture. She was very excited to see the elephant wondering in the street. “But where do you park an elephant at night?”
Once we arrived at the parking to go into the TAJ, Julie had explained to me that they had brought their stuffed Youpi, he is like the travelling nome he goes everywhere with them. He is a mascot for hockey (I think I was only half way paying attention). The only thing I could think of was that TED was not allowed into the TAJ. (TED was Sonia’s little stuffed bear). Well, We smuggled Youpi into the TAJ, through security, and the pat down, Youpi rode up my skirt. I was kind of scared that Youpi and I were going to be banned from the TAJ, but we made it in and I was thinking of TED the whole time…pour TED he did not get to see the TAJ!
By 9:30, the heat was getting to all of us, but we still had to have our photo op. Scott took Elaine and my picture in every pose possible in front of the TAJ, then it was Scott and I’s turn. Julie was Soooo over it. When we got out of the gates, we were bombarded by carriage’s, Julie and Elaine rode one up to the car. Scott and I stayed back with Ajay, and we were followed by an 8 year old boy trying to sell us stuff. He was adorable, I tried to give him 10 rupees just for being so adorable. He was telling me all about his teacher, his family, and still selling me his snow globe key chain. We had to wait for him to stop at the water fountain, he had to spit out his chew. He also had a tattoo on his forearm. When we were almost to the car, a couple of kids chased him down. They pulled his ear, and pulled him away from me. He was in trouble for talking to me, and was not allowed to accept the money from me unless I bought something. I felt badly for him. I wish I could take them all home with me!
We were all soaked in sweat and not looking forward to riding in the car for another 3 hours back to the hospital, so we talked the receptionist at the hotel into letting us keep one room a couple hours passed check out. This was an advantage for Scott, Elaine and I because we could lounge around at the pool, and Julie to recooperate a little. She is feeling worse now that she was in the heat. Scott and I were the first ones by the pool. It was too hot to only lay by the pool, to survive I had to get in. While I was slashing around Julie and Elaine were lounging in the room. I met a guy who was from Australia, he was on business, he had been travelling for the past year. He had just been to Africa, after visiting the states. He was very interesting to chat with, I deffinetly do not have a problem meeting people, it makes the trip more interesting!
Julie and Elaine finally came out to the pool after a while. Elaine and I had some tropical (non alcohol) fruity drinks, pool side. It was the best. I am really going to miss them when I am gone. After checking out of our hotel, we ordered food to go and we were on our way back to Green Park! We all tried to sleep on the way, but the driver was driving way to crazy, I was seat belted into the seat and almost fell off of the seat! I also have a little bit of a sunburn, so I am freezing from the AC. Scott and I traded seats, I sat in the back seat the rest of the way. Which, now I have figured it out, the back is the best you get to see everything from both sides. And in India, THERE IS A LOT TO SEE!
It has not cooled down at all, and it is very hard to sleep. I talked Scott into going down the street a block away from the hospital to buy an ice cream from the Ice cream man. Elaine wanted one too! By the time I got back with her popcycle it was already melting. I am exhausted, and will definetly sleep well tonight!
A good night of rest, maybe from the long day that I had yesterday. Same routine as always, wake up, shower, traffic jam, PT. PT was fun today! I was the first one in the physio room as always until 9:15 when Shawn showed up, then 9:30 for Louis. I did my normal routine of stretches, balancing, and walking in the walker.
After PT a group of us decided to go out for lunch. I arranged for the taxi. When we all got down to the lobby, they had sent our taxi away. The receptionist had to call for another one. We waited and waited for another taxi to show, when it finally did, it was too small for all of us. I made the plan to have Jacque, Julie, and Scott ride in the taxi with my wheelchair, and Elaine and I would take a Tuc-Tuc. That planned failed, so it ended up being only the girls who went to lunch. We piled into the taxi (it is now 98 degrees here) it was too hot for us to sit on lap’s so I sat on the floor. After lunch we went to McDonald’s for ice cream.
We arrived at the hospital just in time for PT. Elaine and I had PT at the same time today. She got to watch me walk in my boots. I had talked Shivani into allowing me to wear my boots to walk, I told her I walked better in my cowboy boots. I struggled on my sidestepping, but walked very far and my steps were much stronger. My hip muscles and back muscles are much stronger, which also helps with my posture. It is getting so much better, I no longer struggle to hold myself up, and it feels great. I had felt so normal in my walking a few weeks ago, but lately it is getting to be a better feeling.
After PT we only had 30 minutes to goof around before Elaine and I had to go to yoga. We were cornered on our way out, by the sister’s to take our vitals. We made quit an entrance, with Elaine on my lap we barged in like we owned the place. The Yoga Man, asked us why we were so late, we told him it was because the sisters stopped us. Scott was already in Yoga, and when we were told to do the “Cow” pose, I looked up at him to see if he had it, and he did, much better than the first day! GOOD JOB SCOTT!
After Yoga, and all of the important stuff was out of the way, it was finally relax time! Elaine and I camped out in my room and watched trash TV. After pigging out on popcorn, we ordered Pizza. We were sent the wrong pizza, we asked for cheese and we got veg. Who puts corn on pizza? UMMM YEA-why do I seem surprised? An hour of explaining to the reception guy what we really wanted, we finally got the right pizza….plain cheese pizza is the safest way to go!
Very restless night for me. Not going to be a positive outcome for the next day!
April 22, 2008
Oh yes, no sleep! I tossed and turned all night, until 4am, and woke up at 7am. I am not sure why I am not sleeping well, but it is making me exhausted for PT. I forced myself out of bed and, into PT. I avoided being way late, by ditching the sisters and my vitals. In PT we did our normal routine again. My steps are getting better day by day. My sidestepping….not so much! It is the hardest thing I have to do in PT.
After PT, I came up to my room, ate some Lucky Charms (thank you Papa), and fell asleep. I woke up when lunch came but I was still so tired that I could not eat, and just kept sleeping. Finally time for PT, but I still was too tired to get up and go. Scott went to tell Shivani that I was not going to make it. I slept for five hours today. 3pm, I finally was able to function. I checked some emails and finished up my blogs.
Jacque is leaving, and our floor is sad. She is our little sunshine. We said our goodbye’s to here.
Scott is finally mingling with some of the other caregivers. I am so happy about that. Even though he is insisting that he is ONLY here for me, I want him to enjoy India too. I want him to remember it in a positive way!
Elaine and I camped out in Shawn’s room again. We made him a flower out of yarn. Elaine is teaching me to crochet, about ten minutes of that and I was bored out of my mind. Shawn was repeating everything I said, so I threatened to shave a leg if he didn’t stop. Well, he didn’t stop so he now has Elaine and my initials shaved into his leg. But, we did not stop there, we filled the bare spot in with Henna, and painted his toe nails blue. We are now getting the silent treatment. Despite the silent treatment, Elaine and I are still sitting in Shawn's room to bug him. HE loves it! While watching a movie a gecko climbed down the wall behind the TV. I wanted to catch it but it was too high, so we had Shawn's friend chasing it up the wall. He could not reach it either so he grabbed the IV pole and was trying to knock it off the wall. The sad little thing, I wanted to play with it, not hurt it! He ended up running away! Bored with Shawn ignoring us, we got the Henna back out and Elaine drew on his friends hand. He enjoyed the attention! He is very quiet, I am not sure what he thinks of us crazy, white American chicks!
I am hoping that despite the 5 hour nap I took today that I will still be able to fall asleep!
April 23, 2008
I finally got some rest last night. I woke up 10 minutes before PT, quickly, I put on some clothes and headed downstairs. I avoided the vitals again today because the sister’s were with another patient. During Physio, my legs were full of spasm’s with the stretching. When I stood up my posture was a lot better. Scott even commented on my posture, he said that it has improved since he has been here. I did not bring my boots with me this morning, so I used the foot things that they made with the caliper’s. I walk so much better with my boots on, Shivani noticed a big difference in my steps with the boots and with the caliper’s. Shawn was in PT with me again this morning, he is still not speaking to me.
I went up to check on Elaine, when I went upstairs. She had Physio shortly after me, so I went down with her to watch her PT. It is getting busy down there, at every hour.
When I came up to take a shower the little ward boy was in my room cleaning. I like to clean it first before him, because I only like him to do the floors. Not that he does a bad job, but I don’t like waiting in the room for him to finish. It is a lot less time that way!
Elaine and I have been trying to mend our situation with Shawn, it is killing me that he will not talk to me. I made some ramen noodles and camped out in his room until PT. Leah was not digging the food today so she had Danno come up for some ramen…that is everyone’s “comfort food”! Shawn and I were talking by typing on the computer. He still will not talk things thru, and it bothers me, I really don’t want him to be upset! Things are almost better with Shawn and I, but it is too late to be discussing our “issue!” I had to be in PT.
PT was very fun, I walked in my boots again, so much better than this morning! I did a lot of sidestepping, and weight shifting. Louis is making huge strides. This morning he stood up without the calipers, and took steps without them too. It was a very emotional time for his mom. She was so happy to see, it made me happy to see that, it made me happy that his mother was so emotional watching her son working so hard for his goal! It was so wonderful that she is here to experience that with him. She is very lucky! This afternoon he walked up some steps. That was amazing! He is gaining so quickly, I love it!
After PT Elaine and I climbed into the bed with Shawn, poor guy he is defenseless with us two! We watched Hannah Montana then went to Yoga.
After Yoga, we all hung out and relaxed until dinner. The days with Yoga we are all very exhausted, it makes for a very long day. Scott went with Danno to the gym. We ordered McDonald’s for dinner. Mr. David made Elaine and I place our own order, we think that he did that so if we mess up we can only blame ourselves. Smart man, that Mr. David. Our dinner, came with a “McDelivery” water bottle…score!
Shawn has finally forgiven us, but Elaine and I had to promise, No More Shenanigan’s! Scott went out with the boys to the “DISCO” (the bar). He enjoyed it very much. I am so happy that he is mingling!
April 24, 2008
I woke up after only three hours of sleep. My sleep pattern it all out of wack, and I am hating it very much. PT was slow this morning. I almost fell asleep while Shivani was stretching me, then we did knee standing. I have not done knee standing in a few days, but I have noticed a lot of improvements with my balance and strength. When I start to get tired my body starts to wobble, Shivani cut’s me off when that happens. Her and I would push me to keep kneeling, however, now that there are more patients we don’t have that much time to do that.
I went directly up to my room, after my injection, and passed out. I need to get some rest, even though I am not a big fan of napping during the day for fear that I will not sleep at night. Right now there are no other options, I will completely crash if I do not sleep. Scott went out to Green Park for some cookies and some other things while I slept. He was very sweet to have done that for me. I slept until lunch came, it was fried rice, I really like it. I ate almost all of my lunch, and barely had enough time to do anything before I had to go to PT. My cowboy boots were in Shawn’s room so I had to wait for him to open his door before I could retrieve them, I was a little late for PT. I did my normal routine of standing, walking in the walker, and sidestepping. I think that my side steps are improving, but Shivani is always telling me they are, “Just OK!” WHAT? Is she kidding me? She has no idea how hard I am trying to make those steps perfect. I think I need to improve on them outside of PT. They are driving me crazy. However, I did watch a video that Sonia had taken before she left, and since then they have improved dramatically, along with my forward and backward stepping. My posture is also so much better than it was a few weeks ago. This makes me so happy, I am so glad I can see the noticeable changes.
Elaine and I made sure we made it to TV time, that’s right, Hannah Montana! We had only time to watch the show then we had a meeting.
Dr. Shroff, and Dr. Ashish haven't had a meeting for all of the patients and families to meet, and discuss changes, or ask questions regarding stem cells, the treatments, etc. since last month, when Sonia was here. I guess I was unclear about today's meeting because Scott assumed I meant that he did not have to go, but that was after I mentioned last time I had only stayed for 15 minutes or so (I guess I neglected to mention I left early for PT that time and Sonia stayed to take notes, my bad). So I went down to the meeting with Julie and Elaine. The group had a discussion on all of the above topics, then the doctors went around asking us to speak about what we noticed in ourselves and some of our personal experiences with our procedures and such. It was an emotional time for all of us. Louis shared a song that he had written about his experiences, and life after his accident. It was an amazing song. His mother, and brother were also there. Everyone has family members with them, whether it be an uncle, a brother, mother, father, but someone from the family. I had Julie and Elaine, who remember, are here for Elaine's treatment. It was kind of sad to look around the room, and to see the family members emotional from this wonderful experience, that I am experiencing with friends. And while my friends are like family to me, and they do mean the world to me, it's just not the same. And I do feel bad they have taken time out of their own lives and away from their families to be with me. I wish my family could be here with me because I certainly miss them sharing these moments with me. But on a brighter note, I am thankful for the emails and constant phone calls, especially from my brother, Papa and Grandma, Uncle Bruce, Aunt Judy and my many friends who have stayed in contact with me to help me stay strong. And knowing that I have a whole town and surrounding community backing me, helps take away my negative emotions when I start feeling frustrated. Thank you to all of you who are supporting me!
My day was not over, however, I did feel the need to get out of the hospital. So, Elaine, Julie and I went to a market for some snacks, and in search of Dominos. It was a late night but it was worth it, I was exhausted and excited to sleep. Tomorrow I have a procedure. It is getting hot here, today it was 105 degrees, tonight in the 80's! WOW! And FYI, I am no longer homesick, I am getting sad to have to leave, actually wish I could stay one more month, but I know my Papa would not like that!
This morning I woke up really late, and I was not feeling well, so I had to skip PT. I was not wanting to skip PT because I only have today, half of a day tomorrow, and five days next week then I have to go home. I had a procedure today, it is an inner muscular injection so I will not have to leave the hospital, I will only have to go upstairs for the procedure. After I took a shower, I went out in the hall to meet the doctor and go to my procedure. However, the lift was broken, AGAIN. Thankfully Scott is here to carry me up. From the 2nd floor, he carried me to the 3rd floor. Opie, and some more of the sister’s were waiting for me. They pulled me into the operation theater on a hard hospital bed. In the doorway, above the door, (all of the doors) there is always a fan. It is so powerful it blew my gown above my head. I am not sure what the fan’s are for, but in every operating room the fan is powerful. There are fans in the elevators too, the fan is like a propeller, I always feel like I am going to take off.
My procedure, went well, I could watch the whole thing from the reflection off the light above me. Dr. Ashish was asking me about my progress, and how I felt about my trip here. I told him that I was pleased with the progress, and I know that it will take some time, but the progress that I have noticed is amazing already. My procedure went well, but I was to lay on my back for two hours with my legs propped up. The two hours ran into my PT, so I missed out on walking today. I did make it into yoga.
The rest of the day, after yoga was very relaxed. Elaine and I hung out and watched a movie. I was exhausted, my procedure completely wore me out. We had to get up early for PT because we are going to the TAJ MAHAL again tomorrow. This will be my second trip to the Taj, but it is worth it, it’s the Temple of Love!
April 26-27,2008
Today was a long day I had physio this morning at 8:30 because we are heading to the TAJ again for the weekend. Julie and Elaine are going along with Scott and i, Elaine’s physio has also been changed so that we can get an early start so that we can enjoy our weekend in Agra, and the pool. It’s time for a little R & R. Plus Scott needs to enjoy his adventure to India, which I think has gone way to quickly for him! I did a lot of walking, and my strength has improved again. They are coming so much easier.
We called for the same taxi driver who drove Sonia, Dianne and I to the TAJ the last time. His name is Ajay. I liked him, he was very helpful the last time when Sonia was so sick, he pushed me everywhere. He knew Agra very well and that helps as well. We are staying at the Trident, it has an outside pool which is awesome because it is now 105 degrees daily, to be able to swim will be very nice.
Our drive through Delhi was long. We left the hospital around 11 or so, and the traffic is hectic. About two hours out of Delhi. It was a fun ride though, we have enough room for all of us, and it is a great scenic ride for Scott, Julie and Elaine. They are getting to see all of the things that excited Sonia and I the first time travelling around India, such as; elephants, camels, the women working in the fields (105 degrees!), the random people bathing, etc.
We had to stop at the McDonald’s to eat, we had 40km to go but we were all very hungry, and I love this McDonald’s it is like one of the few places in India that is accessable. It is nice to go to a restroom that is not a hole in the ground! Not that I have tried…I have been fortunate enough to have avoided the hole’s! Julie was ready to leave us at the McDonald’s because it was extremely hot, and Elaine and I were having a photo session with Ronald McDonald! It was very entertaining.
Back into the car again, but only for about 30 minutes then we arrive in Agra. We checked into our hotel, and OMG, it was very nice to have a LARGE clean bed, a room that smelled nothing like a hospital, and of course the pool! Julie and Elaine took a nap while Scott and I lounged by the pool, and pretended we were in Mexico drinking Corona’s. However, he was drinking a beer, and Surprise surprise I was drinking coca-cola.
After the pool we had dinner. Scott was daring and ordered a hamburger..yes real beef. Where does the beef come from? Well India of course! YUMMY, Sacred COW! He said it tasted delicious. Umm, yea good for you bud, I am waiting for Papa to take me to get not so sacred cow! While Scott was making his phone call home, Elaine and I ran around the halls. Yes, we were excited! It was freedom, we were free no one to watch us, no one to force us back into our rooms at a certain time…..ooops I forgot about JULIE! She followed us as we ran down the halls, (ok Elaine ran, but she was pushing me). Seriously, the hall way was like 80 room lengths, and it went in a perfect square, so 80 rooms 4 times! Julie put us in lock down in our room, (Elaine and I were having a slumber party, Julie was enjoying her room alone!) Scott on the other hand, was having a hard time sleeping, they didn’t put door bells on the outside of the hotel rooms for decoration! He was right across the hall from us, but once he started ignoring us and our “ding dong ditch” we did finally turn on the cartoons and go to bed. The baby stem cells are making me young again! I’m Kidding, it was the only channel in English!
Early rise on Sunday. April 27, 2008
Elaine and I woke up at 6:30 am. We need to get an early start for the TAJ because it will be way too hot later. Julie was not feeling well this morning so Elaine, Scott, and I ate breakfast, then we were all off to the TAJ. On our way, Julie is sight seeing, and yells into the back of the car…”ooooh a camel- LOOK!” UH, hello Julie your in the front seat, why don’t you see the big a** elephant in front of you? She is delirious from being sick! We had Ajay pull over so that she could take a picture. She was very excited to see the elephant wondering in the street. “But where do you park an elephant at night?”
Once we arrived at the parking to go into the TAJ, Julie had explained to me that they had brought their stuffed Youpi, he is like the travelling nome he goes everywhere with them. He is a mascot for hockey (I think I was only half way paying attention). The only thing I could think of was that TED was not allowed into the TAJ. (TED was Sonia’s little stuffed bear). Well, We smuggled Youpi into the TAJ, through security, and the pat down, Youpi rode up my skirt. I was kind of scared that Youpi and I were going to be banned from the TAJ, but we made it in and I was thinking of TED the whole time…pour TED he did not get to see the TAJ!
By 9:30, the heat was getting to all of us, but we still had to have our photo op. Scott took Elaine and my picture in every pose possible in front of the TAJ, then it was Scott and I’s turn. Julie was Soooo over it. When we got out of the gates, we were bombarded by carriage’s, Julie and Elaine rode one up to the car. Scott and I stayed back with Ajay, and we were followed by an 8 year old boy trying to sell us stuff. He was adorable, I tried to give him 10 rupees just for being so adorable. He was telling me all about his teacher, his family, and still selling me his snow globe key chain. We had to wait for him to stop at the water fountain, he had to spit out his chew. He also had a tattoo on his forearm. When we were almost to the car, a couple of kids chased him down. They pulled his ear, and pulled him away from me. He was in trouble for talking to me, and was not allowed to accept the money from me unless I bought something. I felt badly for him. I wish I could take them all home with me!
We were all soaked in sweat and not looking forward to riding in the car for another 3 hours back to the hospital, so we talked the receptionist at the hotel into letting us keep one room a couple hours passed check out. This was an advantage for Scott, Elaine and I because we could lounge around at the pool, and Julie to recooperate a little. She is feeling worse now that she was in the heat. Scott and I were the first ones by the pool. It was too hot to only lay by the pool, to survive I had to get in. While I was slashing around Julie and Elaine were lounging in the room. I met a guy who was from Australia, he was on business, he had been travelling for the past year. He had just been to Africa, after visiting the states. He was very interesting to chat with, I deffinetly do not have a problem meeting people, it makes the trip more interesting!
Julie and Elaine finally came out to the pool after a while. Elaine and I had some tropical (non alcohol) fruity drinks, pool side. It was the best. I am really going to miss them when I am gone. After checking out of our hotel, we ordered food to go and we were on our way back to Green Park! We all tried to sleep on the way, but the driver was driving way to crazy, I was seat belted into the seat and almost fell off of the seat! I also have a little bit of a sunburn, so I am freezing from the AC. Scott and I traded seats, I sat in the back seat the rest of the way. Which, now I have figured it out, the back is the best you get to see everything from both sides. And in India, THERE IS A LOT TO SEE!
It has not cooled down at all, and it is very hard to sleep. I talked Scott into going down the street a block away from the hospital to buy an ice cream from the Ice cream man. Elaine wanted one too! By the time I got back with her popcycle it was already melting. I am exhausted, and will definetly sleep well tonight!
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