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Week Two: October 26 - November 1, 2008
DAY 5: SUNDAY, October 26, 2008
No PT today because it is Sunday.
However, Kasie received her twice daily stem cell injections.
A day of catching up on stuff around here and with other patients.
DAY 6: MONDAY, October 27, 2008
Tough night sleeping for Kasie, it's getting louder and louder as Diwali approaches. Fireworks going off at all hours of day and NIGHT mostly - even though they are only supposed to be set off between 6pm and 10pm, and not near hospitals. Yeah, right. Her sleep schedule is still off, and this isn't helping.
Super smokey this morning too. Burning is heavy today, actually woke both of us this morning about 430am.
She already has had her morning stem cell injection, and is now waiting to go to PT. Today there will only be a 1/2 day of PT, because the staff has 1/2 day because of Diwali tomorrow. There is to be a Diwali celebration this afternoon for patients and staff here at the hospital.
Since there was only one PT session today because of Diwali, it was an extended session. Kasie worked with Shivani on her stretches; and while Shivani was stretching both Kasie’s legs, Kasie was able to feel some deep stretching in her quads. It was a much stronger sensation on her right leg. She can feel it when Shivani is pushing Kasie foot up towards her hip. Kasie also worked on her core strength and upper body exercises, by doing crunches and push ups. Once she was all warmed up it was time to walk. Once again she walked from the bed with her walker. The PT room is becoming a very busy place these days, and the parallel bars were taken. So Kasie was walking around the room and out into the hall.
As she was heading out, Dr. Shroff was watching her and stopped Kasie. She was absolutely delighted at how well Kasie was walking (me too). Kasie is very stable, very strong, has good hip movements…so well in fact that Dr. Shroff told Kasie she should seriously consider ditching the chair. Geeta wants Kasie to consider that when she comes to and from PT to come with a walker instead of her chair; or to wander the hall a bit with the walker instead of her chair; to help build up her strength. So Kasie was up to the challenge today, she walked on out of the PT room, and onto the elevator – which can be a trap sometimes around here because it generally doesn’t stay open long enough to get in, even if your holding the “open doors” button. But on she went, and up to our floor, off the elevator and down the hall to her buddy Elaine’s room to surprise her. Julie and Elaine were both thrilled to see Kasie had walked to visit them. Anyway once there, Kasie was pretty tired. It had been a long walk, on top of all her PT. She looked fantastic though…what a great job!
You Tube Video Link Kasie walking with walker 10-27-2008
You Tube Video Link Kasie walking & talking with Dr.Geeta Shroff
You Tube Video Link Kasie walking in hallway after PT
A quick lunch and then back downstairs to celebrate Diwali with the other patients and staff.
Diwali (Deepavali), is a major Indian holiday known as the “Festival of Lights." It is celebrated on the first day of the lunar Kartika, (the new moon) which can be in either October or November. Homes and business are decorated with lights, candles and bright colors and flowers. The lights signify the victory of good over the evil within every human being. In Sanskrit “deep” = lamp and “avalii” = row.
There are many aspects why this day is significant and a cause for celebration. The birth of the Goddess of Wealth, Prosperity and Luck – Lakshmi and also the killing of Narakasura, an evil demon who created havoc are just two. Diwali also marks the end of the harvest season in most of India. Prays of thanks for a bountiful season, as well as prays for a good harvest next season are offered. Lakshmi Puja is performed to seek the blessings of Lakshmi who brings with her prosperity, wealth and fulfillment.
Diwali gifts are exchanged among all near and dear ones; and Dr. Geeta and her husband Ashok gave tea and incense to all the patients and their caregivers.
After the celebration, Kasie and Elaine went downstairs to the PT room and got some additional exercise by tossing around the exercise ball.
Fireworks started early and the afternoon and continued through the night.
DAY 7 - TUESDAY October 28, 2008
Happy Diwali...most of the staff is off today for the celebration of Diwali, so no PT.
Kasie had her injections today and wandered around the hospital a bit today just to get out.
All day long fireworks were going off, but once the sun went down, they really got started. Fireworks EVERYWHERE. In the streets...a great display we could see from the room. Elaine and Kasie sat on Kasie's bed and watched the street for hours. The fireworks displays, including the ones being set off right below us by staff and some of the Aussie caregivers that are here were quite exceptional in fact. Finally around 3am most of it stopped. Tough night to sleep for sure.
DAY 8 - WEDNESDAY, October 29, 2008
This morning as I was on a walk with one of the other caregivers, the streets were empty, riddled with remnants of the fireworks...and still very smoke filled, and not just from the normal burning, there was a heaviness in the air from all the fireworks. The nice thing though, was there was hardly anyone out like normal (even at 530am).
Right now Kasie's getting ready for morning PT. And I'm just catching up the website...had issues yesterday with the connection.
So, Kasie’s morning PT went really well. She of course did the normal array of stretches and core strengthening exercises. And today when she walked to the parallel bars, she actually walked up the ramp herself for the first time; a little tricky since there is a lip off the floor to get over and onto the ramp. So she had to lift her legs a little higher and shift her wait a little more to do it. Shivani was trying to help her, and Kasie told her she wanted to do it herself, and she did. Then Kasie continued with walking in the parallel bars, both forward and backwards, and of course the dreaded sidestepping. But that does help her a lot with the weight shifting, so it is really a good exercise for her.
You Tube Video Link Kasie ramp and parallel bars
During afternoon PT, Kasie did some more floor exercises. CAT and CAMEL are stabilizing exercises from the kneeling position. Think of kneeling and keeping your back straight…CAT; then go into CAMEL by hunching your back up. Both can be somewhat trying exercises for someone with and SCI at T8, T9, and T10, but they help with core strength and stability. And since Kasie has had these exercises since her first treatment last spring, Shivani has now added some new things to these exercises. Now Kasie is also to rotate her hips in both directions (right / left) while going between the two positions. Some other knew things that were added to Kasie’s PT repertoire today include kneeling upright, kneeling and doing arm extensions, and now squatting.
DAY 9: THURSDAY, October 30, 2008
Morning PT, Kasie’s sidestepping was great today. As PT was ending, they came to tell us that Kasie’s procedure was moved up from noon to - NOW. So we had to rush upstairs to get all our stuff together for a day over at the other hospital. Food, water, movies, blanket, etc…
Small room today at the Gautam Nagar, no window and a little dark, which was actually good since the lack of sleep from all the fireworks the past few days has really caught up to Kasie. Today’s procedure was another caudal. This one was lower than her first caudal procedure last week. This one was at tailbone.
During the procedure Kasie had stomach spasms below her belly button, so they had to hold her down. She didn’t feel the injection this time, however, she could feel the pressure as Dr. Ashish was pressing on and around her tailbone. Kasie was given two bricks again under the foot of the bed and was told she couldn’t eat for an hour, and not to move for 5 hours. Since she was so tired anyway, it wasn't that tough an order. After her hour was up and she could eat, she did…and then she slept for awhile. I made my way back to NuTech for the plumber, again – who was supposed to be there at 2pm to fix the shower (this., mind you is the 3rd guy coming on it). No plumber showed up, go figure; so I left our room key with Julie, because no staff personnel are allowed to enter the rooms if the patient or caregiver are not there, not even for maintenance because there have been issues in the past with theft. Anyway, I wasn’t going to wait around on the plumber, so I headed back to Gautam Nagar and Kasie. She had about an hour and ½ left til she could move. Once she could move and sat up, she felt fine, no headache, so it was time to head back. We got back to NuTech about 5pm, and guess what, Kasie was feeling a little bit energetic, so she went down to the PT room and practiced standing WITHOUT her calipers in the parallel bars for about 10 minutes, without any assistance locking her knees out. She also lifted some weights for awhile. Then back up to the room, and low and behold, the plumber still hadn’t been there. Finally around 7pm he showed up…but he also was finally able to fix the shower, so now we have both hot water and water pressure. Yahoo!
DAY 10: FRIDAY, October 31, 2008
Happy Halloween!
No trick or treating for us. Bummer, who’s got all the candy?!
Kasie was exhausted today, pretty normal after a procedure though. At least she doesn’t get the headaches and nausea that a lot of the other patients get after their procedures.
So two procedures down this trip already, and two more to go. Things are looking good. Kasie is strong, her stability improves everyday, as does her walking. I’m so proud of her. It’s not easy for her, or any of the patients who are undergoing treatment here. But they are all remarkable in their own right…and they are so encouraging to each other. Kasie puts herself through plenty of physical and emotional pain in the hopes of improving the quality of her life as a paraplegic, and of course the end goal of walking again. Some of it is of course the “homesick” sort of thing – being so far from family and friends, while undergoing this treatment half way around the world, it is actually draining on all of them to be without their larger support networks. Despite the website and trying to keep you all informed as best we can, there is so much that I don’t write about because it can be too personal, too trying, and quite often just tedious for Kasie. It’s tough because she’s not as connected to all of you as she would like to be – as she is at home. And then there’s the physical effort she is putting into all her exercises and walking…sometimes painful, most often exhausting…but she just gets stronger and stronger all the time…she’s doing great! And I just wanted you all to know that.
Kasie did have her standard morning PT session, but instead of doing her walking exercises this morning, she stood again for about 10 minutes WITHOUT her calipers. Shivani was impressed that Kasie was locking her knees out all on her own. After PT, it was upstairs for lunch and a quick power nap for Kasie. Afternoon PT rolled around pretty quick though, and despite Kasie still being tired – off she went, with just a little nudge. She did her mat exercises: CAT, CAMEL, hip rotations, kneeling with arm extensions, etc. And then of course she also practiced her walking, with the walker and also in the parallel bars. Afterwards, instead for just giving into being tired, Kasie did want to get out, good girl. So what is there to do in Delhi at 500pm on a Friday afternoon? We of course went to a market and people watched, did some haggling for the fun of it, found a magic carpet, and got Kasie some dinner. It was actually a nice afternoon to be out, and the normal smoke in the air wasn’t too bad.
DAY 11: SATURDAY, November 01, 2008
Wow, it’s November already…time’s flying here in Delhi. Kasie’s midway through her treatment, and doing fabulous - only two more weeks to go.
Uh-oh, today, was just one of those days. There was some serious miscommunication between Kasie and the sisters this morning. While I was gone to yoga, Kasie had gotten up and at about 8am she went out to the nurses station and asked the sister on duty for her stem cell injection because she was ready for it and wanted to be able to get ready without being interrupted.. Well the sister told her it would be in a little while, so Kasie returned to the room, and waited, and waited, and then finally had to grab a shower and got ready to head down to PT. Well at about 10:20am, Kasie went back out to the nurses station, since no one had come by yet with her shot; and it was at that point they told her today’s shot was to be an infusion, which means it is an IV treatment which takes about ½ hour. Really not gonna work since PT’s at 11am, but what choice is there, not have the infusion; not likely. This is one of those “India” things here that so gets under your skin…planning and schedules are just so non-existent at times, it can be so infuriating. Anyway, she had her infusion in the room. Dr. Sudeep came in to talk to her about rectifying this situation in the future; and instructed the sisters to give Kasie her shot, or infusion when she is ready for it and asks for it; so she doesn’t have to wait on them. Anyway, Kasie was about 10 minutes late to PT this morning; but she and Shivani cranked through PT – the stretches, the core exercises, and most importantly the walking.
This afternoon, at about 2:30pm, we headed out for a few hours, we just had to get out of the hospital for awhile. It’s starting to be a bit tiresome and tedious around here, so just getting Kasie out for a few hours is a really good thing. Besides, today is Saturday, and there is no afternoon PT on Saturdays.
No PT today because it is Sunday.
However, Kasie received her twice daily stem cell injections.
A day of catching up on stuff around here and with other patients.
DAY 6: MONDAY, October 27, 2008
Tough night sleeping for Kasie, it's getting louder and louder as Diwali approaches. Fireworks going off at all hours of day and NIGHT mostly - even though they are only supposed to be set off between 6pm and 10pm, and not near hospitals. Yeah, right. Her sleep schedule is still off, and this isn't helping.
Super smokey this morning too. Burning is heavy today, actually woke both of us this morning about 430am.
She already has had her morning stem cell injection, and is now waiting to go to PT. Today there will only be a 1/2 day of PT, because the staff has 1/2 day because of Diwali tomorrow. There is to be a Diwali celebration this afternoon for patients and staff here at the hospital.
Since there was only one PT session today because of Diwali, it was an extended session. Kasie worked with Shivani on her stretches; and while Shivani was stretching both Kasie’s legs, Kasie was able to feel some deep stretching in her quads. It was a much stronger sensation on her right leg. She can feel it when Shivani is pushing Kasie foot up towards her hip. Kasie also worked on her core strength and upper body exercises, by doing crunches and push ups. Once she was all warmed up it was time to walk. Once again she walked from the bed with her walker. The PT room is becoming a very busy place these days, and the parallel bars were taken. So Kasie was walking around the room and out into the hall.
As she was heading out, Dr. Shroff was watching her and stopped Kasie. She was absolutely delighted at how well Kasie was walking (me too). Kasie is very stable, very strong, has good hip movements…so well in fact that Dr. Shroff told Kasie she should seriously consider ditching the chair. Geeta wants Kasie to consider that when she comes to and from PT to come with a walker instead of her chair; or to wander the hall a bit with the walker instead of her chair; to help build up her strength. So Kasie was up to the challenge today, she walked on out of the PT room, and onto the elevator – which can be a trap sometimes around here because it generally doesn’t stay open long enough to get in, even if your holding the “open doors” button. But on she went, and up to our floor, off the elevator and down the hall to her buddy Elaine’s room to surprise her. Julie and Elaine were both thrilled to see Kasie had walked to visit them. Anyway once there, Kasie was pretty tired. It had been a long walk, on top of all her PT. She looked fantastic though…what a great job!
You Tube Video Link Kasie walking with walker 10-27-2008
You Tube Video Link Kasie walking & talking with Dr.Geeta Shroff
You Tube Video Link Kasie walking in hallway after PT
A quick lunch and then back downstairs to celebrate Diwali with the other patients and staff.
Diwali (Deepavali), is a major Indian holiday known as the “Festival of Lights." It is celebrated on the first day of the lunar Kartika, (the new moon) which can be in either October or November. Homes and business are decorated with lights, candles and bright colors and flowers. The lights signify the victory of good over the evil within every human being. In Sanskrit “deep” = lamp and “avalii” = row.
There are many aspects why this day is significant and a cause for celebration. The birth of the Goddess of Wealth, Prosperity and Luck – Lakshmi and also the killing of Narakasura, an evil demon who created havoc are just two. Diwali also marks the end of the harvest season in most of India. Prays of thanks for a bountiful season, as well as prays for a good harvest next season are offered. Lakshmi Puja is performed to seek the blessings of Lakshmi who brings with her prosperity, wealth and fulfillment.
Diwali gifts are exchanged among all near and dear ones; and Dr. Geeta and her husband Ashok gave tea and incense to all the patients and their caregivers.
After the celebration, Kasie and Elaine went downstairs to the PT room and got some additional exercise by tossing around the exercise ball.
Fireworks started early and the afternoon and continued through the night.
DAY 7 - TUESDAY October 28, 2008
Happy Diwali...most of the staff is off today for the celebration of Diwali, so no PT.
Kasie had her injections today and wandered around the hospital a bit today just to get out.
All day long fireworks were going off, but once the sun went down, they really got started. Fireworks EVERYWHERE. In the streets...a great display we could see from the room. Elaine and Kasie sat on Kasie's bed and watched the street for hours. The fireworks displays, including the ones being set off right below us by staff and some of the Aussie caregivers that are here were quite exceptional in fact. Finally around 3am most of it stopped. Tough night to sleep for sure.
DAY 8 - WEDNESDAY, October 29, 2008
This morning as I was on a walk with one of the other caregivers, the streets were empty, riddled with remnants of the fireworks...and still very smoke filled, and not just from the normal burning, there was a heaviness in the air from all the fireworks. The nice thing though, was there was hardly anyone out like normal (even at 530am).
Right now Kasie's getting ready for morning PT. And I'm just catching up the website...had issues yesterday with the connection.
So, Kasie’s morning PT went really well. She of course did the normal array of stretches and core strengthening exercises. And today when she walked to the parallel bars, she actually walked up the ramp herself for the first time; a little tricky since there is a lip off the floor to get over and onto the ramp. So she had to lift her legs a little higher and shift her wait a little more to do it. Shivani was trying to help her, and Kasie told her she wanted to do it herself, and she did. Then Kasie continued with walking in the parallel bars, both forward and backwards, and of course the dreaded sidestepping. But that does help her a lot with the weight shifting, so it is really a good exercise for her.
You Tube Video Link Kasie ramp and parallel bars
During afternoon PT, Kasie did some more floor exercises. CAT and CAMEL are stabilizing exercises from the kneeling position. Think of kneeling and keeping your back straight…CAT; then go into CAMEL by hunching your back up. Both can be somewhat trying exercises for someone with and SCI at T8, T9, and T10, but they help with core strength and stability. And since Kasie has had these exercises since her first treatment last spring, Shivani has now added some new things to these exercises. Now Kasie is also to rotate her hips in both directions (right / left) while going between the two positions. Some other knew things that were added to Kasie’s PT repertoire today include kneeling upright, kneeling and doing arm extensions, and now squatting.
DAY 9: THURSDAY, October 30, 2008
Morning PT, Kasie’s sidestepping was great today. As PT was ending, they came to tell us that Kasie’s procedure was moved up from noon to - NOW. So we had to rush upstairs to get all our stuff together for a day over at the other hospital. Food, water, movies, blanket, etc…
Small room today at the Gautam Nagar, no window and a little dark, which was actually good since the lack of sleep from all the fireworks the past few days has really caught up to Kasie. Today’s procedure was another caudal. This one was lower than her first caudal procedure last week. This one was at tailbone.
During the procedure Kasie had stomach spasms below her belly button, so they had to hold her down. She didn’t feel the injection this time, however, she could feel the pressure as Dr. Ashish was pressing on and around her tailbone. Kasie was given two bricks again under the foot of the bed and was told she couldn’t eat for an hour, and not to move for 5 hours. Since she was so tired anyway, it wasn't that tough an order. After her hour was up and she could eat, she did…and then she slept for awhile. I made my way back to NuTech for the plumber, again – who was supposed to be there at 2pm to fix the shower (this., mind you is the 3rd guy coming on it). No plumber showed up, go figure; so I left our room key with Julie, because no staff personnel are allowed to enter the rooms if the patient or caregiver are not there, not even for maintenance because there have been issues in the past with theft. Anyway, I wasn’t going to wait around on the plumber, so I headed back to Gautam Nagar and Kasie. She had about an hour and ½ left til she could move. Once she could move and sat up, she felt fine, no headache, so it was time to head back. We got back to NuTech about 5pm, and guess what, Kasie was feeling a little bit energetic, so she went down to the PT room and practiced standing WITHOUT her calipers in the parallel bars for about 10 minutes, without any assistance locking her knees out. She also lifted some weights for awhile. Then back up to the room, and low and behold, the plumber still hadn’t been there. Finally around 7pm he showed up…but he also was finally able to fix the shower, so now we have both hot water and water pressure. Yahoo!
DAY 10: FRIDAY, October 31, 2008
Happy Halloween!
No trick or treating for us. Bummer, who’s got all the candy?!
Kasie was exhausted today, pretty normal after a procedure though. At least she doesn’t get the headaches and nausea that a lot of the other patients get after their procedures.
So two procedures down this trip already, and two more to go. Things are looking good. Kasie is strong, her stability improves everyday, as does her walking. I’m so proud of her. It’s not easy for her, or any of the patients who are undergoing treatment here. But they are all remarkable in their own right…and they are so encouraging to each other. Kasie puts herself through plenty of physical and emotional pain in the hopes of improving the quality of her life as a paraplegic, and of course the end goal of walking again. Some of it is of course the “homesick” sort of thing – being so far from family and friends, while undergoing this treatment half way around the world, it is actually draining on all of them to be without their larger support networks. Despite the website and trying to keep you all informed as best we can, there is so much that I don’t write about because it can be too personal, too trying, and quite often just tedious for Kasie. It’s tough because she’s not as connected to all of you as she would like to be – as she is at home. And then there’s the physical effort she is putting into all her exercises and walking…sometimes painful, most often exhausting…but she just gets stronger and stronger all the time…she’s doing great! And I just wanted you all to know that.
Kasie did have her standard morning PT session, but instead of doing her walking exercises this morning, she stood again for about 10 minutes WITHOUT her calipers. Shivani was impressed that Kasie was locking her knees out all on her own. After PT, it was upstairs for lunch and a quick power nap for Kasie. Afternoon PT rolled around pretty quick though, and despite Kasie still being tired – off she went, with just a little nudge. She did her mat exercises: CAT, CAMEL, hip rotations, kneeling with arm extensions, etc. And then of course she also practiced her walking, with the walker and also in the parallel bars. Afterwards, instead for just giving into being tired, Kasie did want to get out, good girl. So what is there to do in Delhi at 500pm on a Friday afternoon? We of course went to a market and people watched, did some haggling for the fun of it, found a magic carpet, and got Kasie some dinner. It was actually a nice afternoon to be out, and the normal smoke in the air wasn’t too bad.
DAY 11: SATURDAY, November 01, 2008
Wow, it’s November already…time’s flying here in Delhi. Kasie’s midway through her treatment, and doing fabulous - only two more weeks to go.
Uh-oh, today, was just one of those days. There was some serious miscommunication between Kasie and the sisters this morning. While I was gone to yoga, Kasie had gotten up and at about 8am she went out to the nurses station and asked the sister on duty for her stem cell injection because she was ready for it and wanted to be able to get ready without being interrupted.. Well the sister told her it would be in a little while, so Kasie returned to the room, and waited, and waited, and then finally had to grab a shower and got ready to head down to PT. Well at about 10:20am, Kasie went back out to the nurses station, since no one had come by yet with her shot; and it was at that point they told her today’s shot was to be an infusion, which means it is an IV treatment which takes about ½ hour. Really not gonna work since PT’s at 11am, but what choice is there, not have the infusion; not likely. This is one of those “India” things here that so gets under your skin…planning and schedules are just so non-existent at times, it can be so infuriating. Anyway, she had her infusion in the room. Dr. Sudeep came in to talk to her about rectifying this situation in the future; and instructed the sisters to give Kasie her shot, or infusion when she is ready for it and asks for it; so she doesn’t have to wait on them. Anyway, Kasie was about 10 minutes late to PT this morning; but she and Shivani cranked through PT – the stretches, the core exercises, and most importantly the walking.
This afternoon, at about 2:30pm, we headed out for a few hours, we just had to get out of the hospital for awhile. It’s starting to be a bit tiresome and tedious around here, so just getting Kasie out for a few hours is a really good thing. Besides, today is Saturday, and there is no afternoon PT on Saturdays.
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