May 21st. Marie had her last IV injection. Everything when well. Marie woke up on May 22 nd. feeling her self for the first time in 5 days. She was able to get back into her daily routine of PT and OT. The next two days it rained and I was unable to take Marie outside. She has been in this room for the last 8 days. I told her it is like being in prison. We break out in two days. Marie is back to her cheerful self. The doctor was in to assess her. Marie is showing very small gains. She holds her head up straighter. Her head would always lean to the left. Her left should is beginning to show some movement. He left arm has a wider range when we lift it. Her left fingers are becoming more relaxed. She is beginning to more her left knee up from a sitting position. Her circulation has improved. He feet are not cold all the time. These are small improvements, but the doctor said they are good signs that something is happening. The next 5 months will be the window of opportunity. They want Marie to come back. We will see how much improvement she makes over the next few months.
May 25th. we packed up and headed to the Shenzhen airport. They sent an interpreter with me. He was amazing help. My luggage was over wait and I had to pay 400 RMB. The amount of wait on domestic flight is less than on a international flights. We had to get a wheel chair because Marie's chair had to go with the luggage. The wheel chair would not fit on the plane to Marie to her seat. The assistant the airline gave me thought he would pick Marie up and almost dropped her. I took over and Marie did an amazing job stepping to her seat. We had the same difficulty getting off. They did a great job of assisting us with getting Marie's chair, luggage, and finding our drivers that were waiting with a sign with our names on it. We got to the car and all our things could not fit in the car. They finally arranged for another car to take the rest. It was now rush hour on a Friday night. It took almost two hours to get to the hotel. It is a 5 star hotel, just beautiful. We get to the room and it isn't a handy cap room. I will not be able to shower her in this room. It will be bed baths until we can get a room change. Chris came to the door and we had big hugs. It is 37C here today. Very hot but we do have our sun block on.
Tomorrow May 27 is filled with a whole day of sightseeing which includes visiting Tiananmen Square, the largest public plaza in the world; the Forbidden City, the former Imperial Palace of the Ming and Qing dynasties; and the Summer Palace, a complex of pavilions, temples and galleries situated among lovely gardens on a huge man made lake.
May 28th. , we will tour the world renowned Great Wall. Then we visit the Ming Tombs, the massive mausoleums that hold the remains and treasures of 13 emperors.
I am sure we will have many adventures to share with regards to getting Marie on and off the bus and moving around with the wheel chair. We have all ready found and easier way to push her around. On the road they have a bicycle lane. Pushing her on the road in the bicycle lane is a little crazy, but so much easier. Don't worry it is safe.
A special thanks to all of you for your comments and inspiration. Reading them gave us a connection to home that Marie and I need.
Saturday, May 26, 2007
Saturday, May 19, 2007
May 11th to May 20th
Marie had her second spinal stem cell injection on Friday May 11. We did the six hours of not moving and she woke up fine. She choked on her milk in the morning, shook her head and got a huge headache. She had to go back to bed. The doctor checked her out and gave her a shot to help get rid of the pain in her head.
Sunday she was feeling fine and we went shopping. I had my first great coffee at Starbucks. Marie bought a lot of things.
Monday and Tuesday were filled with the same routine.
Wed. Marie received her third spinal stem cell injection. We did the six hour of no movement and she was fine in the morning. When she was put on the standard in PT, she got a massive headache and had to go to bed. The doctor gave her another shoot to relieve the pain. She has been in and out of bed now for the last four days with headaches. Today is Sunday May 20Th. I am tired of being here, the last few days have been very difficult. I have five more sleeps until I meet up with Chris. I can't wait. No one here does any lifting., even in PT. I transfer Marie at least 12 times a day. My back is worn out. Tomorrow Marie gets her last Stem cell injection. This one is an IV. It doesn't have any side affects. The weather this week has been 35 c. Today it is raining and cooling off. Marie is sick of spending so many hours in bed. Please respond with some good news for encouragement for Marie.
Sunday she was feeling fine and we went shopping. I had my first great coffee at Starbucks. Marie bought a lot of things.
Monday and Tuesday were filled with the same routine.
Wed. Marie received her third spinal stem cell injection. We did the six hour of no movement and she was fine in the morning. When she was put on the standard in PT, she got a massive headache and had to go to bed. The doctor gave her another shoot to relieve the pain. She has been in and out of bed now for the last four days with headaches. Today is Sunday May 20Th. I am tired of being here, the last few days have been very difficult. I have five more sleeps until I meet up with Chris. I can't wait. No one here does any lifting., even in PT. I transfer Marie at least 12 times a day. My back is worn out. Tomorrow Marie gets her last Stem cell injection. This one is an IV. It doesn't have any side affects. The weather this week has been 35 c. Today it is raining and cooling off. Marie is sick of spending so many hours in bed. Please respond with some good news for encouragement for Marie.
Wednesday, May 9, 2007
Hi, Everyone. Sorry, I haven't posted anything in the last week. Where does the time fly. Marie and I have been so busy here I just haven't had the time or energy to blog. Last Mon., Tues., and Wed., were filled with therapy and sleeping. Thursday, I hired a care giver for Marie. She didn't speak any English and Marie was great in tring to communicate with her. I went out food shopping. What an experience this was. I was able to get a lot of vegetable and made a stir fry for us. Food is very cheap here. I then was taken with the guide to get my hair done. What a great experience this was. You lie on a table and get your hair washed and massaged for a 1\2 hour, and then they massage your back for another 1\2 hour. All this cost $7:00. On Friday Marie received the IV stem cell treatment. Everything went well. Sat and Sun were filled with therapy and sleeping. Sunday night everyone on the floor went to Sea World. It is a big square with fine dinning. We had a great meal. The fathers here help me get Marie in and out of the taxi. Taxi cab rides are a whole new experience here in China.They weave across four lanes and back in seconds.Everyone here has become a big family. Everyone helps each other.I didn't get out shopping with Marie yet, but hope to this Sunday.
Monday, April 30, 2007
Day 5 Stem Cell Injections
Marie will receive five treatments over the month one every 6 days. The treatments consist of 10,000,ooo umbilical stem cells. It sounds like a lot, but in volume is probably a cubic mm or so, suspended in a cc nutrient solution, However, these grow and multiply once in place, especially neurons, which are large. This process take up to three months. If there is new growth we will see it the very slowly over the next three, months.
The injections are administered in to ways: Intravenously or lumar punch. With the blood brain barrier, few stem cells reach the brain or cerebellum with the IV method, but are more effective for joint and muscle problems, eyesight etc. where ever blood flows. Since 90% of cord blood stem cells are hematopoeitic (pre-disposed to become blood, muscle or immune cells) what you essentially get is a high-tech blood doping. People here who have had the IV injections got a perceptible rush that last for hours, making sleep imposable. IV injections are given in the room, with a small IV of Nerve growth factor, to coax the stem cells into neurons. A yellow fluid, NGF takes about 1\2 hour, and then you are free to move.
Lumbar punches are more elaborate, and more effective for ataxics and brain or spinal-cord damage. The stem cells are injected into the spinal fluid. Your bed in wheeled into a clean room, where the doctor does the lumbar punch. You curl up into a tight fetal position on your left side, the doctor probes your #1 lumbar under local anesthetic, finds the proper position, removes a volume of spinal fluid, and then injects an equal amount of stem cell fluid. You are given the IV bag of NGF. You are then instructed not move at all to minimize spinal fluid leakage. Any thrashing about or gross movement may cause leakage of some fluid, resulting in the dreaded spinal headache. There have been a few people here who have had these headache and they have had to stay in bed all day.
Marie will get three lumbar treatment for her brain injury and two IV treatment that they hope will help her left arm find some movement.
Marie received her first lumbar treatment. When they brought her back to the room I put pillows on both sides of her head and wrapped her tight in blankets to keep her from moving. I sat an watched over her for the next six hours. She would sleep 40 minutes and then cry in pain for the next 20 minutes. Her back was in a lot of pain from the lumbar punch. She wanted to be rolled on her side. I used all my creativity to try and take her mind off the pain. It was the longest six hour, and I was exhausted after. The next two treatment I will have Marie sedated so she doesn't have to go through this pain. The treatment went well in that Marie didn't get a headache and was totally fine the next day. One of the benefits of the growth factor is improved circulation. Marie has had very poor circulation in her legs and feet. Her feet are always cooled. She wears heated slippers every night to bed. She woke up last night to ask me to take the blankets off her feet, because they were too hot. Her feet have turned pink again and are warmer. They were always cold and purple in colour. Marie's next treatment will be the IV on Friday.
This week is the Chinese holiday May 1st., very little is happening for the next few days here. Everyone is off for the holiday. Marie and I plan to take a shopping trip to Luo Hu Shopping Centre.We have been told that this is the place to go for all the designer knock offs (clothes, watches, shoes, purses etc. We will let you know how are adventure goes.
The injections are administered in to ways: Intravenously or lumar punch. With the blood brain barrier, few stem cells reach the brain or cerebellum with the IV method, but are more effective for joint and muscle problems, eyesight etc. where ever blood flows. Since 90% of cord blood stem cells are hematopoeitic (pre-disposed to become blood, muscle or immune cells) what you essentially get is a high-tech blood doping. People here who have had the IV injections got a perceptible rush that last for hours, making sleep imposable. IV injections are given in the room, with a small IV of Nerve growth factor, to coax the stem cells into neurons. A yellow fluid, NGF takes about 1\2 hour, and then you are free to move.
Lumbar punches are more elaborate, and more effective for ataxics and brain or spinal-cord damage. The stem cells are injected into the spinal fluid. Your bed in wheeled into a clean room, where the doctor does the lumbar punch. You curl up into a tight fetal position on your left side, the doctor probes your #1 lumbar under local anesthetic, finds the proper position, removes a volume of spinal fluid, and then injects an equal amount of stem cell fluid. You are given the IV bag of NGF. You are then instructed not move at all to minimize spinal fluid leakage. Any thrashing about or gross movement may cause leakage of some fluid, resulting in the dreaded spinal headache. There have been a few people here who have had these headache and they have had to stay in bed all day.
Marie will get three lumbar treatment for her brain injury and two IV treatment that they hope will help her left arm find some movement.
Marie received her first lumbar treatment. When they brought her back to the room I put pillows on both sides of her head and wrapped her tight in blankets to keep her from moving. I sat an watched over her for the next six hours. She would sleep 40 minutes and then cry in pain for the next 20 minutes. Her back was in a lot of pain from the lumbar punch. She wanted to be rolled on her side. I used all my creativity to try and take her mind off the pain. It was the longest six hour, and I was exhausted after. The next two treatment I will have Marie sedated so she doesn't have to go through this pain. The treatment went well in that Marie didn't get a headache and was totally fine the next day. One of the benefits of the growth factor is improved circulation. Marie has had very poor circulation in her legs and feet. Her feet are always cooled. She wears heated slippers every night to bed. She woke up last night to ask me to take the blankets off her feet, because they were too hot. Her feet have turned pink again and are warmer. They were always cold and purple in colour. Marie's next treatment will be the IV on Friday.
This week is the Chinese holiday May 1st., very little is happening for the next few days here. Everyone is off for the holiday. Marie and I plan to take a shopping trip to Luo Hu Shopping Centre.We have been told that this is the place to go for all the designer knock offs (clothes, watches, shoes, purses etc. We will let you know how are adventure goes.
Friday, April 27, 2007
Days 3 and 4 have been filled with many adventures. Marie began her therapy. Therapy here is very aggressive. The praise "no pain no gain" truly is their mission statement. Marie began with acupuncture that is nothing compare to North American acupuncture The needle are twice as long and they hook them to a machine that sense electrical impulse to the area. It was very painful at first, I had to hold Marie's hand and talk her through it. She will get this treatment five days a week. The physical therapy, and occupational therapy is individualized for Marie which consists of morning and afternoon sessions. Morning
is "voice" which Marie wears a collar that sends electrical impulse to the throat muscles in the hope to improve swallowing and speech. Then they do a lot of work on her left arm and hand. The afternoon is spend on doing exercise on balance. Marie was so exhausted that she couldn't finish her session. She is still experiencing a lot of jet lag and is not sleeping though the night. The doctor gave her a sleeping pill last night, and it is the first night she has had a good sleep. Thank goodness that I brought food with me. The first night we went out, we couldn't find a restaurant that was wheel chair accessible. We gave up. The one at the Hospital has no English menu and we didn't know what we were ordering, it was very frustrating.
We have now meet the other families here on the floor. Four families from Canada, two from Italy, two from the states and one from Hungry. There are four others we haven't meet yet. They have been here for two weeks and told me of two restaurant that have English menu that we can get to. Also there is a supermarket up the street. I will hire a care giver so that I can go and get some food to cook here in the hospital. The supermarket is not wheel chaired accessible.
The elevators are also a challenge in patience. We are on the 14th. floor. All the OT and PT are done on the 4 floor. There are so many people that come to this hospital each day that it has taken up to 20 minutes to get into an elevator. I am learning to be aggressive.
Tomorrow will be Marie's big day with her first stem cell injections.
We miss you all.
is "voice" which Marie wears a collar that sends electrical impulse to the throat muscles in the hope to improve swallowing and speech. Then they do a lot of work on her left arm and hand. The afternoon is spend on doing exercise on balance. Marie was so exhausted that she couldn't finish her session. She is still experiencing a lot of jet lag and is not sleeping though the night. The doctor gave her a sleeping pill last night, and it is the first night she has had a good sleep. Thank goodness that I brought food with me. The first night we went out, we couldn't find a restaurant that was wheel chair accessible. We gave up. The one at the Hospital has no English menu and we didn't know what we were ordering, it was very frustrating.
We have now meet the other families here on the floor. Four families from Canada, two from Italy, two from the states and one from Hungry. There are four others we haven't meet yet. They have been here for two weeks and told me of two restaurant that have English menu that we can get to. Also there is a supermarket up the street. I will hire a care giver so that I can go and get some food to cook here in the hospital. The supermarket is not wheel chaired accessible.
The elevators are also a challenge in patience. We are on the 14th. floor. All the OT and PT are done on the 4 floor. There are so many people that come to this hospital each day that it has taken up to 20 minutes to get into an elevator. I am learning to be aggressive.
Tomorrow will be Marie's big day with her first stem cell injections.
We miss you all.
Wednesday, April 25, 2007
We would just like to thank everyone for the great fundraiser. The evening was such a great success.
Day One
We just finished our 26 hours of adventure getting here. We arrived at the hospital last night at 2:00 am. I tried to find a place to get a coffee this morning and could not. I convinced a young man at the restaurant to make me a coffee to go. He made it in a glass funnel that looked like a science experiment. Then he put it in a plastic coke cup and sent me on my way. I think I am going to go thought caffeine withdrawal. The doctors were in checking Marie from head to toe. She had her first 40 min herbal IV treatment. She will get one of these each day. It is to help detox the system. We of for more OT and PT assessment. Just want every one to know we arrived safely.
Day One
We just finished our 26 hours of adventure getting here. We arrived at the hospital last night at 2:00 am. I tried to find a place to get a coffee this morning and could not. I convinced a young man at the restaurant to make me a coffee to go. He made it in a glass funnel that looked like a science experiment. Then he put it in a plastic coke cup and sent me on my way. I think I am going to go thought caffeine withdrawal. The doctors were in checking Marie from head to toe. She had her first 40 min herbal IV treatment. She will get one of these each day. It is to help detox the system. We of for more OT and PT assessment. Just want every one to know we arrived safely.
Friday, March 30, 2007
Post Meeting
So, we had a great meeting, and I'm going to be sending out this website to people that have bought tickets!
Here are some of the things that you can bid on:
$25 gift certificates from Chapters and the Keg
$20 gift certificates from Rona and Shell
Westdale fencing club gift certificate to learn how to fence
Socket and tool set
Hand knit baby outfit and blanket (green and white)
Pirate Play set
2 LARGE gift baskets (filled with lotions etc.)
1 medium sized gift basket
$75 gift certificate to Rapini's Ristorante
a few other restaurant gift certificates
Foot Massager
Lawn ornament bird cage
A Mary Kay gift basket
A cheese Basket
I will continue to update the list as we get more items!
We will have games at a reasonable price! There will be Toss the Toonie, Hole in one, hockey targets and a LIMBO competition :-)
Also, don't forget your FISH insurance (hee hee)
We will also be raffling off a romantic hot air ballon ride for 2 !
Can't wait to see you all there!
(tickets will not be sold at the door, and we're selling out fast!)
Hugs
Preeti
Here are some of the things that you can bid on:
$25 gift certificates from Chapters and the Keg
$20 gift certificates from Rona and Shell
Westdale fencing club gift certificate to learn how to fence
Socket and tool set
Hand knit baby outfit and blanket (green and white)
Pirate Play set
2 LARGE gift baskets (filled with lotions etc.)
1 medium sized gift basket
$75 gift certificate to Rapini's Ristorante
a few other restaurant gift certificates
Foot Massager
Lawn ornament bird cage
A Mary Kay gift basket
A cheese Basket
I will continue to update the list as we get more items!
We will have games at a reasonable price! There will be Toss the Toonie, Hole in one, hockey targets and a LIMBO competition :-)
Also, don't forget your FISH insurance (hee hee)
We will also be raffling off a romantic hot air ballon ride for 2 !
Can't wait to see you all there!
(tickets will not be sold at the door, and we're selling out fast!)
Hugs
Preeti
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