Sunday, October 29, 2006
Saturday and Sunday were fun days for Lukas. On Saturday, Lukas got therapy at 9:00 A.M. and his third day of NGF IV at 11:00 A.M. Like I said before, I really pushed hard to get Lukas's NGF in before noon. From 12-2PM is usually lunch/nap time. And Lukas gets therapy at 2:10 P.M. also. That means we usually don't finish NGF until late in the day. So, I pushed for everything to be done so we can leave right after therapy at around 3 PMish. So, today we took Lukas to Sea World, which is a 5 minute walk from our apartment condo. This weekend is the International Food Festival so there's so much to see and do. Lukas thoroughly enjoyed himself. He did not cry one bit.
The nanny and I ate at a Korean restaurant (I love Korean drama and food). It was pretty nice and relaxing. Afterwards, we strolled Lukas around and then went home. On Sunday, we did the same thing. We strolled Lukas around the neighborhood. Then we went to the grocery store and then home. Then we went to Sea World again for dinner at the Pirana BBQ buffet. It's about $6 per person and the food is pretty awesome. The nanny fed Lukas while I ate. I wanted to feed Lukas, but the helper says she needs to do it, otherwise she will loose her job if anyone finds out. In other words, she does pretty much everything and won't let me do anything for Lukas. I just supervise I guess. Then we strolled around and took Lukas home. We went home and gave Lukas a bath. Then it was Sponge Bob time. Lukas is such a happy boy. I'm so glad we took the trip to Shenzhen. The treatments appear to be working for Lukas and he's also very happy and enjoying the time here.
He's been sound asleep sinc 10 P.M. He slept late because he took a late evening nap. I'm so proud of my little boy. He's such a happy and sweet child. I love him so much. Gotta go now... I'm so tired...
The nanny and I ate at a Korean restaurant (I love Korean drama and food). It was pretty nice and relaxing. Afterwards, we strolled Lukas around and then went home. On Sunday, we did the same thing. We strolled Lukas around the neighborhood. Then we went to the grocery store and then home. Then we went to Sea World again for dinner at the Pirana BBQ buffet. It's about $6 per person and the food is pretty awesome. The nanny fed Lukas while I ate. I wanted to feed Lukas, but the helper says she needs to do it, otherwise she will loose her job if anyone finds out. In other words, she does pretty much everything and won't let me do anything for Lukas. I just supervise I guess. Then we strolled around and took Lukas home. We went home and gave Lukas a bath. Then it was Sponge Bob time. Lukas is such a happy boy. I'm so glad we took the trip to Shenzhen. The treatments appear to be working for Lukas and he's also very happy and enjoying the time here.
He's been sound asleep sinc 10 P.M. He slept late because he took a late evening nap. I'm so proud of my little boy. He's such a happy and sweet child. I love him so much. Gotta go now... I'm so tired...
Friday, October 27, 2006
Today is Friday and another typical day. Lukas got NGF through his IV in the morning, took a nap, and then had therapy. We get up at 7 A.M., each morning and arrive at the hospital by 9A.M. We left the hospital today at around 3 P.M. I tried to push to get Lukas to get his IV earlier in the day so we can go back to the apartment early and have time to do other things. Lukas will not get another stem cell IV on Monday, but rather another spinal injection. So we will remove his IV on Saturday, and start another IV line on Monday while he is sleeping in the operating room. The plan is the IV line will remain open until Friday when Lukas gets his 6th stem cell treatment. Then on Monday, Nov. 6th, Lukas will get his final SCT which will again be a spinal injection. Daddy will arrive on Tuesday moring, Nov. 7th, and will take us home on Nov. 10th. I'm afraid Lukas will have another horrible flight coming back like he did coming to Shenzhen. He cried and we (grandpa and I) had to hold him for 10 hours. I nearly broke my back. So, hopefully Daddy can help with the holding. When I get back to the States I have to see a doctor about my back. It's gotten to the point where I can't get up after I sit down. And I can't get up after I bend down to grab something. I mean I can, but my backpain level is like a 9 out of 10, and I feel like keeling over. And, I've been loading up on Advil each day and it's not doing any good.
I don't like to take Lukas out after dark (it gets dark at around 5 PMish). So, today we went to Sea World after we left the hospital. It was really fun and Lukas enjoyed it. Sea World is not like the ones in the States. The one here is more like San Francisco's Pier 39 if any of you have been there. It's a bunch of restaurants, shops, street vendors, and people hanging out by the waterfront. Our apartment condo is located about 5 minutes walk from Sea World. The apartment is about 30 feet from the water. If I jump out my balcony I can probably land and swim in the water. Just kidding. I don't know how to swim. So, I took Lukas to a Brazilian BBQ buffet. They have all kinds of grilled meats on skewers that they bring around to the tables and serve to you at the table. There are also lots of dishes that you can get at the buffet area. It's quite delicious and inexpensive. There all kinds of restaurants here from Indian, to Italian, to Russian, Chinese, American steak house, American fast foods, etc. It was exciting for us to hang out at Sea World today because this weekend is the International Food Festival at Sea World. So there are loud music, and food vendors serving food outside of the restaurants. You can also rent anything from a mechanical walking horse for the kids, to a Segway for he adults. The walkways are all transformed into cuisine alleys for all to enjoy this weekend. Then at 9 P.M., they also had fireworks.
After we ate at 6PM, we left for the apartment at around 7:30ish. The helper and I gave Lukas a bath when we got home and then played with him. At 9 P.M., we heard loud, booming sounds but didn't know what they were. Turns out there were fireworks at Sea World. So I went out the balcony and the fireworks were right in front of my face. Lukas enjoyed being in the balcony too as I tried to burp him. The fireworks were beautiful and I got everything on my camcorder. Shenzhen is a modernized and beautiful city. There are many many many modern and very tall buildings here. Of all the places I've visited in Asia, I can totally see myself living here. It's nice and affordable. Though the people here are generally rude, and the cars want to run you over, you can get use to everything. However, once these people become your friends, they can be really generous, helpful, trustworthy, loyal, and kind. I've met some people here who turn out to be really helpful, caring, and protective of me and Lukas. I'm very grateful for these people who are Maggie (my sister-in-law's friend's friend) and her husband, Gary (my sister-in-law's friend who introduced me to Maggie), Yuan (my helper), Mr. Wong (my driver), and Jia Chuang (the security guard).
I've also met some really nice people and hung out with some wonderful families including Gabby and his mother, Rita and Mason, Debra and her mother Jean, Bill and his wife Babes, and a bunch of other people on the 14th floor who are really nice. The staff Jon, Grace, Camilla, Sunny, Jillian, and Andrea are all really helpful and nice. They get things done. Just be on top of things with them.
Well, good night.
I don't like to take Lukas out after dark (it gets dark at around 5 PMish). So, today we went to Sea World after we left the hospital. It was really fun and Lukas enjoyed it. Sea World is not like the ones in the States. The one here is more like San Francisco's Pier 39 if any of you have been there. It's a bunch of restaurants, shops, street vendors, and people hanging out by the waterfront. Our apartment condo is located about 5 minutes walk from Sea World. The apartment is about 30 feet from the water. If I jump out my balcony I can probably land and swim in the water. Just kidding. I don't know how to swim. So, I took Lukas to a Brazilian BBQ buffet. They have all kinds of grilled meats on skewers that they bring around to the tables and serve to you at the table. There are also lots of dishes that you can get at the buffet area. It's quite delicious and inexpensive. There all kinds of restaurants here from Indian, to Italian, to Russian, Chinese, American steak house, American fast foods, etc. It was exciting for us to hang out at Sea World today because this weekend is the International Food Festival at Sea World. So there are loud music, and food vendors serving food outside of the restaurants. You can also rent anything from a mechanical walking horse for the kids, to a Segway for he adults. The walkways are all transformed into cuisine alleys for all to enjoy this weekend. Then at 9 P.M., they also had fireworks.
After we ate at 6PM, we left for the apartment at around 7:30ish. The helper and I gave Lukas a bath when we got home and then played with him. At 9 P.M., we heard loud, booming sounds but didn't know what they were. Turns out there were fireworks at Sea World. So I went out the balcony and the fireworks were right in front of my face. Lukas enjoyed being in the balcony too as I tried to burp him. The fireworks were beautiful and I got everything on my camcorder. Shenzhen is a modernized and beautiful city. There are many many many modern and very tall buildings here. Of all the places I've visited in Asia, I can totally see myself living here. It's nice and affordable. Though the people here are generally rude, and the cars want to run you over, you can get use to everything. However, once these people become your friends, they can be really generous, helpful, trustworthy, loyal, and kind. I've met some people here who turn out to be really helpful, caring, and protective of me and Lukas. I'm very grateful for these people who are Maggie (my sister-in-law's friend's friend) and her husband, Gary (my sister-in-law's friend who introduced me to Maggie), Yuan (my helper), Mr. Wong (my driver), and Jia Chuang (the security guard).
I've also met some really nice people and hung out with some wonderful families including Gabby and his mother, Rita and Mason, Debra and her mother Jean, Bill and his wife Babes, and a bunch of other people on the 14th floor who are really nice. The staff Jon, Grace, Camilla, Sunny, Jillian, and Andrea are all really helpful and nice. They get things done. Just be on top of things with them.
Well, good night.
Thursday, October 26, 2006
Wow, it's now Thursday and I haven't updated the blog yet. Sorry everyone. I've been so busy. When I put Lukas to sleep at night, I always tell myself I will get up to write the blog but it never happened. So, Lukas is still up and playing right now. It's about 9 P.M.
I hired a helper on Tuesday to help me take care of Lukas. Yuan, the helper, is really nice and attentive. I never leave Lukas out of my sight unless I have to go do my thing; if you know what I mean. Lukas got his 4th SCT yesterday, another spinal injection. Those always require more work and care because we have to keep the IV line open for 4 days, plus the next IV stem cell treatment round. To prevent poking Lukas so many times, we typically keep his IV from the spinal treatment until the next time he gets his IV stem cell treatment. That is almost 1 week to keep an IV line. Lukas is very uncomfortable and I feel bad for him too. He doesn't sleep well and that means I can't sleep well either. He likes to bite the IV line off, so I put an arm prompt to keep his arms straight. By the way, YOU NEED AN ARM WRAP/OR PROMPT if you have small children who are getting IVs. It's better with them. In my case, I got arm and leg wraps for Lukas. He's a feisty boy!! And very strong too! So, we have to keep the IV line open until Monday when he has his stem cell treatment number 5. We plan to have a total of 7 by the time we leave China on November 10th.
By the way, I totally recommend getting an apartment condo if you can when you're doing stem cell treatment. Although, logistically it's harder to move to and from the hospital and apartment/hotel, it's all worth it in the end. We do have a private car that is affiliated with the apartment so they can help you with everything. Almost all TAXI drivers DO NOT help you with your stroller or bags or anything. They just wait for you to load things up, and get frustrated when you take too long. Hello, I only have 2 arms, 1 handicapped child, a stroller, milk bag, diaper bag, grocery bag, food bag, etc. Can you get your ass out of the driver seat and help me? NO? I didn't think so.... I don't know if TAXI drivers in the States are like that or not. Here, 99% of the people only care about themselves and what they are doing. They don't have any considerationg or politeness for others... even if you are old, disabled, etc. The private car driver, Mr. Wong, does everything for me including folding and unfolding the stroller, loading the bags, etc. I just have to carry Lukas and get in the car. I pay him the same as I would with the Taxi.
People at the hospital and their children feel confined and the kids feel stressed. Because it's hard to go outside and explore with a stroller or wheelchair, often times people with children stay at the hospital most of the time and it can be stressful. As for Lukas, I've never seen him so happy ever. Aside from getting poked for the IVs, he's always very into what we're doing and happy when moving around. We feel like the hospital is the treatment center and the apartment is our real rest place... our home away from home. So Lukas and I are extremely comfortable. Moving to and from isn't so bad and you get used to the routine. We wake up really early everyday anyways regardless of staying at the hospital or apartment.
IMPROVEMENTS: I've decided to put a list together of the change I see in Lukas and post it later. For now, I don't want to say too much. I do see some immediate changes and I hope these are just the beginning of something better to come when the stem cells have had time to mature and multiply. God, please bless my son, Lukas, so that he can recover more and more each day. Each improvement you give to Lukas is a testament of your miracle, love, and mercy. We love you so much!
We miss and love you daddy Louis, Ba Ngoai, Ba Noi, anh Lance, em Leland, Bac Dave and Yen, Bac Ty and Dan, Anh Derek and Grant, Bac Duy, Godparents Crystal and Gerald and Ba Be, Cindy, Nathan, Nicholas, and Henry. Thanks for all your love, support, and prayers. We love you always! And thanks to all our friends who email us like Thuy, Quang, and Minh, Mark, Yonnus, Nancy, etc.
I hired a helper on Tuesday to help me take care of Lukas. Yuan, the helper, is really nice and attentive. I never leave Lukas out of my sight unless I have to go do my thing; if you know what I mean. Lukas got his 4th SCT yesterday, another spinal injection. Those always require more work and care because we have to keep the IV line open for 4 days, plus the next IV stem cell treatment round. To prevent poking Lukas so many times, we typically keep his IV from the spinal treatment until the next time he gets his IV stem cell treatment. That is almost 1 week to keep an IV line. Lukas is very uncomfortable and I feel bad for him too. He doesn't sleep well and that means I can't sleep well either. He likes to bite the IV line off, so I put an arm prompt to keep his arms straight. By the way, YOU NEED AN ARM WRAP/OR PROMPT if you have small children who are getting IVs. It's better with them. In my case, I got arm and leg wraps for Lukas. He's a feisty boy!! And very strong too! So, we have to keep the IV line open until Monday when he has his stem cell treatment number 5. We plan to have a total of 7 by the time we leave China on November 10th.
By the way, I totally recommend getting an apartment condo if you can when you're doing stem cell treatment. Although, logistically it's harder to move to and from the hospital and apartment/hotel, it's all worth it in the end. We do have a private car that is affiliated with the apartment so they can help you with everything. Almost all TAXI drivers DO NOT help you with your stroller or bags or anything. They just wait for you to load things up, and get frustrated when you take too long. Hello, I only have 2 arms, 1 handicapped child, a stroller, milk bag, diaper bag, grocery bag, food bag, etc. Can you get your ass out of the driver seat and help me? NO? I didn't think so.... I don't know if TAXI drivers in the States are like that or not. Here, 99% of the people only care about themselves and what they are doing. They don't have any considerationg or politeness for others... even if you are old, disabled, etc. The private car driver, Mr. Wong, does everything for me including folding and unfolding the stroller, loading the bags, etc. I just have to carry Lukas and get in the car. I pay him the same as I would with the Taxi.
People at the hospital and their children feel confined and the kids feel stressed. Because it's hard to go outside and explore with a stroller or wheelchair, often times people with children stay at the hospital most of the time and it can be stressful. As for Lukas, I've never seen him so happy ever. Aside from getting poked for the IVs, he's always very into what we're doing and happy when moving around. We feel like the hospital is the treatment center and the apartment is our real rest place... our home away from home. So Lukas and I are extremely comfortable. Moving to and from isn't so bad and you get used to the routine. We wake up really early everyday anyways regardless of staying at the hospital or apartment.
IMPROVEMENTS: I've decided to put a list together of the change I see in Lukas and post it later. For now, I don't want to say too much. I do see some immediate changes and I hope these are just the beginning of something better to come when the stem cells have had time to mature and multiply. God, please bless my son, Lukas, so that he can recover more and more each day. Each improvement you give to Lukas is a testament of your miracle, love, and mercy. We love you so much!
We miss and love you daddy Louis, Ba Ngoai, Ba Noi, anh Lance, em Leland, Bac Dave and Yen, Bac Ty and Dan, Anh Derek and Grant, Bac Duy, Godparents Crystal and Gerald and Ba Be, Cindy, Nathan, Nicholas, and Henry. Thanks for all your love, support, and prayers. We love you always! And thanks to all our friends who email us like Thuy, Quang, and Minh, Mark, Yonnus, Nancy, etc.
Monday, October 23, 2006
Hi Everyone! It's Monday, 10/23, at 7:50 P.M. I didn't realize my apartment had free wireless networks. There are actually 5 unsecured networks. So, I can't do any sensitive data, but can check email and write Lukas's blogs. Anyhoo, this is good because I can actually keep you all updated more. Recently, things have been kinda hectic since we try to leave the hospital as soon as Lukas's activities are over. So I don't have time to use the computer at the hospital.
So, last Friday, Lukas had his 3rd stem cell treatment by IV. It was easy; but Lukas cried so much. It's not the pain, he's just really really aware and scared. After we finished the IV, we left for the apartment and he was fine. On Saturday, we had dim sum at this awesome awesome restaurant with some of our friends at the hospital. It was hard to order the dim sum without being able to look at the items and point. Good thing, Maggie was there to help us translate the Chinese dim sum menu. Then, on Sunday, after church in the morning, we went to Low Wu Commercial Industry building with Rita and her 11 year old son, Mason. They're from Indiana and really nice people. I like hanging out with Rita. Both boys, Lukas and Mason, behaved really well. Both moms were quite surprised and loving it. We did some shopping for knockoffs. It was fun wheeling and dealing.
Then, today Lukas had therapies at 9am and 2pm. Then, we went home afterwards and are relaxing. This week, Lukas will have just one SC treatment on Wednesday. It will be another spinal injection. I dread SI the most because Lukas has to keep his IV for 3 extra days - each day he gets more nerve growth factor (NGF). So to prevent poking him each day, we opt to keep the IV line open. I know some of you emailed me regarding how safe it is to keep the IV lines open, which I completely understand. But what you don't know is that the nurses and doctors here have NO concept of wearing gloves or sanitizing their hands. They don't even use alcohol swabs, just Q-Tip dipped in iodine solution. The iodine solution is a big jar that gets dipped many times over. Anyhow, every time I ask the nurse to use PURELL before handling Lukas's IV, etc., they get kinda annoyed and irritated, but I could care less. So, parents bring the below:
- Gloves if you want them to use it, then make them use it. Don't be surprised if they get irritated or refuse when you make this request.
- PURELL
- Battery operated, small fan
- Sun block if you have sensitive skin
- Alcohol swabs
- All the medicine you need... they don't have any OTC meds we have in the U.S. like Tylenol, Advil, Immodium AD, etc.
- All the milk for your child. Do not use milk here as they do not have a pasteurized system or standards.
- Something to play music with like computer or portable stereo, etc. You get really bored here so you'll need something to entertain yourselves. They do have DVD player and TV in the rooms. But not all rooms have DVD players.
- More to come...
I also hired a helper today because grandpa can't help me forever. He's gotta head back to the States soon. So I have to get someone to help me take care of Lukas. It's really busy to take care of Lukas and logistically it's hard to move around with just me, Lukas, and the stroller... and milk bag, and diaper bag, and grocery bag, and food bag, etc.... Taxis don't help you, so you gotta do everything yourself. Sometimes, I have to put Lukas down on the floor (on a blanket of course), then put all the bags away, and the stroller, etc., then get Lukas. It's hard moving around with just me doing everything. Not to mention the streets here are not handicapped or stroller friendly. There are many steps, everywhere, and typically in front of the store you want to enter. So, usually you need two people to carry Lukas and the stroller up the steps. There are few ramps here... actually there's only one, which is at the hospital entrance. That's it!!! No other ramps. Elevator is also a missing item at shopping centers and grocery stories. Everything here is built vertically and they only use escalators, not many elevators. So it's even harder to take Lukas and his stroller anywhere. I guess I could carry him around with me, but that means I have no hands left for grocery shopping or carrying other items.
Well, that's it for now... til next time. We love and miss you all. I miss you so much Lance and, especially my wee one, Leland.
So, last Friday, Lukas had his 3rd stem cell treatment by IV. It was easy; but Lukas cried so much. It's not the pain, he's just really really aware and scared. After we finished the IV, we left for the apartment and he was fine. On Saturday, we had dim sum at this awesome awesome restaurant with some of our friends at the hospital. It was hard to order the dim sum without being able to look at the items and point. Good thing, Maggie was there to help us translate the Chinese dim sum menu. Then, on Sunday, after church in the morning, we went to Low Wu Commercial Industry building with Rita and her 11 year old son, Mason. They're from Indiana and really nice people. I like hanging out with Rita. Both boys, Lukas and Mason, behaved really well. Both moms were quite surprised and loving it. We did some shopping for knockoffs. It was fun wheeling and dealing.
Then, today Lukas had therapies at 9am and 2pm. Then, we went home afterwards and are relaxing. This week, Lukas will have just one SC treatment on Wednesday. It will be another spinal injection. I dread SI the most because Lukas has to keep his IV for 3 extra days - each day he gets more nerve growth factor (NGF). So to prevent poking him each day, we opt to keep the IV line open. I know some of you emailed me regarding how safe it is to keep the IV lines open, which I completely understand. But what you don't know is that the nurses and doctors here have NO concept of wearing gloves or sanitizing their hands. They don't even use alcohol swabs, just Q-Tip dipped in iodine solution. The iodine solution is a big jar that gets dipped many times over. Anyhow, every time I ask the nurse to use PURELL before handling Lukas's IV, etc., they get kinda annoyed and irritated, but I could care less. So, parents bring the below:
- Gloves if you want them to use it, then make them use it. Don't be surprised if they get irritated or refuse when you make this request.
- PURELL
- Battery operated, small fan
- Sun block if you have sensitive skin
- Alcohol swabs
- All the medicine you need... they don't have any OTC meds we have in the U.S. like Tylenol, Advil, Immodium AD, etc.
- All the milk for your child. Do not use milk here as they do not have a pasteurized system or standards.
- Something to play music with like computer or portable stereo, etc. You get really bored here so you'll need something to entertain yourselves. They do have DVD player and TV in the rooms. But not all rooms have DVD players.
- More to come...
I also hired a helper today because grandpa can't help me forever. He's gotta head back to the States soon. So I have to get someone to help me take care of Lukas. It's really busy to take care of Lukas and logistically it's hard to move around with just me, Lukas, and the stroller... and milk bag, and diaper bag, and grocery bag, and food bag, etc.... Taxis don't help you, so you gotta do everything yourself. Sometimes, I have to put Lukas down on the floor (on a blanket of course), then put all the bags away, and the stroller, etc., then get Lukas. It's hard moving around with just me doing everything. Not to mention the streets here are not handicapped or stroller friendly. There are many steps, everywhere, and typically in front of the store you want to enter. So, usually you need two people to carry Lukas and the stroller up the steps. There are few ramps here... actually there's only one, which is at the hospital entrance. That's it!!! No other ramps. Elevator is also a missing item at shopping centers and grocery stories. Everything here is built vertically and they only use escalators, not many elevators. So it's even harder to take Lukas and his stroller anywhere. I guess I could carry him around with me, but that means I have no hands left for grocery shopping or carrying other items.
Well, that's it for now... til next time. We love and miss you all. I miss you so much Lance and, especially my wee one, Leland.
Thursday, October 19, 2006
Hi y'all. We miss you all very much; especially my other boys. Anyhoo, Lukas got the spinal injection on Monday. Then on Tuesday he had another bag of NGF (nerve growth factor). Then the nurse didn't know that Lukas will be getting the NGF for 3 days straight so she went ahead and removed it. What a mistake!!! Apparently the docs and nurses don't communicate with each other. So, for Wednesday, Lukas got poked again. This time he got an IV in the foot and we have to keep it until Friday. Thursday will be another bag of NGF. Then we might as well keep the IV line since Friday is another IV of stem cell. So Friday evening Lukas will finally be free of IVs and discomfort. We will take him out this weekend because he loves to go sightseeing and window shopping. We will probably go to the border of Hong Kong to Lo Hou Commercial Building. It's got so many things that are cheap and good.
Anyhow, we see Lukas's awareness level is definitely improving. He can understand and follow some simple commands. This is definitely new. We are very very happy in our apartment as it's private and we don't have to share anything with anyone. Thus, it makes life more comfortable. Especially when we don't have to see all the smokers who stare at us all the time since we complained about them. I think the air quality if better but not completely resolved. On Tuesday, I came to the hospital at 10pm to talk to a friend and saw a guy smoking outside the balcony where my room used to be. They like smoking right next to there. Anyhow, I'm glad we moved out. And, logistically it's not that bad. We get up early typically anyways. So, it doesn't matter that we have to take the taxi to the hospital. We got plenty of time.
There's so much to do and see here. It's pretty exciting. But we are here to take care of Lukas, not have that much fun. So, most things I do are run errands, go grocery shopping for Lukas's stews, and buy necessary items. And of course, shop for my friends and family members. I see time flying so fast and many more things need to be taken cared of. Sine the Internet here is so slow, it takes me 1 hour just to read emails and respond - something I could do in about 15 minutes back in the States.
We are doing really great and I have so much hope for Lukas's recovery. Beike has raised the prices again starting 12/15/06, so I'm thinking whether or not I should stay longer and do 8 injections for Lukas!!! That way, he's got the best chance possible. Thanks and take care everyone. I hope you'll all pray for us.
Anyhow, we see Lukas's awareness level is definitely improving. He can understand and follow some simple commands. This is definitely new. We are very very happy in our apartment as it's private and we don't have to share anything with anyone. Thus, it makes life more comfortable. Especially when we don't have to see all the smokers who stare at us all the time since we complained about them. I think the air quality if better but not completely resolved. On Tuesday, I came to the hospital at 10pm to talk to a friend and saw a guy smoking outside the balcony where my room used to be. They like smoking right next to there. Anyhow, I'm glad we moved out. And, logistically it's not that bad. We get up early typically anyways. So, it doesn't matter that we have to take the taxi to the hospital. We got plenty of time.
There's so much to do and see here. It's pretty exciting. But we are here to take care of Lukas, not have that much fun. So, most things I do are run errands, go grocery shopping for Lukas's stews, and buy necessary items. And of course, shop for my friends and family members. I see time flying so fast and many more things need to be taken cared of. Sine the Internet here is so slow, it takes me 1 hour just to read emails and respond - something I could do in about 15 minutes back in the States.
We are doing really great and I have so much hope for Lukas's recovery. Beike has raised the prices again starting 12/15/06, so I'm thinking whether or not I should stay longer and do 8 injections for Lukas!!! That way, he's got the best chance possible. Thanks and take care everyone. I hope you'll all pray for us.
Monday, October 16, 2006
Hi Everyone!
Lukas did really realy well yesterday. He had the spinal injection at around 4:30 P.M. Got out 30 minutes later and was groggy. They didn't let him eat until 9 P.M. He was really hungry. I fed him slowly and gave him some porridge. We had to stay at the hospital overnight. Now, they are telling me Lukas's IV stays in for the next three days. The reason is that they have to give him the Nerve Growth Factor each afternoon for the next three day. So to prevent from poking him each time, they say it's better to leave the IV in and use it when needed. I've never liked leaving IVs in Lukas. He doesn't like it and it increases the risk of infections. So, now I have the option of keeping the IV line, or having them poke Lukas each time for the Nerve Growth Factor. Or, opt out of getting the NGF at all. They recommend it, but you don't have to have the NGF. I'll think about these and get back to the docs later. For today, I definitely want him to get more NGF. For tomorrow, that's something to think about.
Anyhoo, everything worked out okay. I really like the apartment we got. It has a gym so I don't have to join the gym. I think I've lost some weight being here, but I still like to exercise. I think I'm only about 103 lbs. I was about 106 when we got here. There's so much food here so you can really get fat. In my case, I've been so busy to eat that's all. :)
I've eaten at a number of great places and will write more about them at a later time. Right now, I gotta go babysit Lukas so Grandpa can get some breakfast.
Miss you all so much. Thanks Stacey, Yonnus, Chi Yen, Cindy, and everyone for your emails and kinds words of encouragement.
Lukas did really realy well yesterday. He had the spinal injection at around 4:30 P.M. Got out 30 minutes later and was groggy. They didn't let him eat until 9 P.M. He was really hungry. I fed him slowly and gave him some porridge. We had to stay at the hospital overnight. Now, they are telling me Lukas's IV stays in for the next three days. The reason is that they have to give him the Nerve Growth Factor each afternoon for the next three day. So to prevent from poking him each time, they say it's better to leave the IV in and use it when needed. I've never liked leaving IVs in Lukas. He doesn't like it and it increases the risk of infections. So, now I have the option of keeping the IV line, or having them poke Lukas each time for the Nerve Growth Factor. Or, opt out of getting the NGF at all. They recommend it, but you don't have to have the NGF. I'll think about these and get back to the docs later. For today, I definitely want him to get more NGF. For tomorrow, that's something to think about.
Anyhoo, everything worked out okay. I really like the apartment we got. It has a gym so I don't have to join the gym. I think I've lost some weight being here, but I still like to exercise. I think I'm only about 103 lbs. I was about 106 when we got here. There's so much food here so you can really get fat. In my case, I've been so busy to eat that's all. :)
I've eaten at a number of great places and will write more about them at a later time. Right now, I gotta go babysit Lukas so Grandpa can get some breakfast.
Miss you all so much. Thanks Stacey, Yonnus, Chi Yen, Cindy, and everyone for your emails and kinds words of encouragement.
Saturday, October 14, 2006
It's Sunday afternoon and yesterday was a long long day. We signed the contract for an apartment yesterday in Shekou and it took a long time. Finally, we end up moving at 11 P.M. Once again, I really appreciate my friend Maggie for being there the whole time to make sure everything was okay. She truly is a jewel of a friend. I've never met someone so dedicated and kind. Her and her husband refused to go home early until we settled in.
Anyhow, the apartment is awesome and we are enjoying the view and fresh air. Today, Lukas is resting because tomorrow is the second stem cell treatment. I don't want him to be sick so we are laying low today. I will do a couple errands today and will buy some McDonald's for Lukas's dinner. I think he miss American food. I've been making too much stew.
Once again, I almost got ran over by a large truck. They really want to run you over. It's your job to avoid them, not the other way around. I need to be more careful. The roads are not like in the U.S., so people drive illegally and sometimes you just don't know where the cars come from.
I've been eating alot of mangosteen lately. I don't know why I like it so much. I love to eat rambutan but they don't have it here. So I have to settle for mangosteen, guava, and durian. Yes, durian (a very very stinky fruit). I like it but have not bought any yet. It'll smell like someone farted in the entire floor. :)
Well, see you all later. I will write more later regarding the spinal injection. (Last time was through IV.) Lukas will get the injection on Monday, at 3 P.M. So I will report to you on Monday or Tuesday how things went. They will sedate him and do the injection in the operating room. So, we'll see how much or if he will cry or not.
We love and miss everyone so much! We can't wait to be home soon.
Anyhow, the apartment is awesome and we are enjoying the view and fresh air. Today, Lukas is resting because tomorrow is the second stem cell treatment. I don't want him to be sick so we are laying low today. I will do a couple errands today and will buy some McDonald's for Lukas's dinner. I think he miss American food. I've been making too much stew.
Once again, I almost got ran over by a large truck. They really want to run you over. It's your job to avoid them, not the other way around. I need to be more careful. The roads are not like in the U.S., so people drive illegally and sometimes you just don't know where the cars come from.
I've been eating alot of mangosteen lately. I don't know why I like it so much. I love to eat rambutan but they don't have it here. So I have to settle for mangosteen, guava, and durian. Yes, durian (a very very stinky fruit). I like it but have not bought any yet. It'll smell like someone farted in the entire floor. :)
Well, see you all later. I will write more later regarding the spinal injection. (Last time was through IV.) Lukas will get the injection on Monday, at 3 P.M. So I will report to you on Monday or Tuesday how things went. They will sedate him and do the injection in the operating room. So, we'll see how much or if he will cry or not.
We love and miss everyone so much! We can't wait to be home soon.
Thursday, October 12, 2006
GETTING READY TO BEAT SOMEONE UP
It's 7:20 P.M. right now. I fed Lukas dinner at 6 P.M. and he ate a huge bowl of stew I made for him yesterday. He is now sound asleep and will probably wake up at midnight and go back to sleep after playing for one hour. Then he and I will sleep together until morning. Lukas seems to really like stews I make using alot of veggies and meats in the crockpot. Overnight, the stew becomes really tender and nutritious. Each time he eats about 1 large bowl. If I don't feed him fast enough, he would holler "an an an" which means "eat eat eat" in my language. Anyhow, so far I haven't seen much changes in Lukas yet. There might be really subtle changes.
Grandpa has been really wonderful in taking care of Lukas. My back has been weak lately and I can not carry anything over 10 pounds before my back gives out. So, it's been hard to hold Lukas and I'm grateful that grandpa is doing all the holding.
Anyhoo, I went apartment hunting today and it's either really cheap or really pricey. For Lukas's sake, only the best will do. We are trying to get away from all the smoke here, so we have to stay in the best place. Only those places have no smoking regulations. All other places allow smokers to smoke everywhere, or it doesn't have AC. Here, you definitely need AC. It's so hot and humid here.
There are a number of people here trying to convince me to stay because we seem to get along really well. I respect them and they respect me. We have mutual respect for each other. I want to take this opportunity to take those people for their kind and warm words: Sally and Kim, Debra and Jean, Gabby and Kami, Cris and family, and Bill. But there's a group of people who like to smoke whenever they feel like it; and it's frustrating trying to complain about those people. They just don't follow the rules. There is a designated smoking area now and they don't use it. Some of them do, but most don't. They have to light up whenever and wherever they like.
One of the smokers is a mother of a small baby patient. She is now really angry at me for complaining about the smoking. The thing that really piss me off is how she is taking it out on Lukas. That @$@Q#$%!!!! Let me tell you what happened. This morning, Lukas was using his Rifton walker to take steps down the hall. He's been walking really fast now in his walker. Lukas suddenly stops right in front of that person's door. When she saw Lukas standing in front of her door, she slammed the door in Lukas's face really really really hard and loud. My father was watching this happen and couldn't believe it. I was in the bathroom and had heard the door slamming but wasn't sure what it was. I realized it was that wench slamming the door in Lukas's face. When my father told me about it, I was ready to go over there and beat the hell out of her!! I may be petite, but I got a couple moves I can use if needed. My father calmed me down and told me it's no use stooping down to their level. They are nothing... a bunch of idiots who obviously can't read or understand what "No Smoking" means even after explaining it to them in their native language.
It's simply too hard to enforce a no smoking policy as only some people follow the rules, not all. It only takes one smoker to fill the entire floor of smoke and for all of us to inhale the second hand smoke. Gabby, a very nice and sweet Romanian patient here, told me that they (the smokers) can wait a few minutes and go to the designated area to smoke. Why do they have to light up right away and break the rules. Just like when they run out of cigarettes, they have to wait and go to the store to buy a new pack. So they can wait just the same to go to the designated area to light up. Well, what Gabby said really makes sense. But, there's only some of us who feel this way.
Anyhow, take care y'all and I'll let you know when we move out. Thanks everyone for reading this blog and praying for Lukas. That's what's important. I want to move out to get away from all this negativity and just focus on Lukas's healing. I don't want to deal with all the smoking issue and how other's anger is directed towards my child!!!
It's 7:20 P.M. right now. I fed Lukas dinner at 6 P.M. and he ate a huge bowl of stew I made for him yesterday. He is now sound asleep and will probably wake up at midnight and go back to sleep after playing for one hour. Then he and I will sleep together until morning. Lukas seems to really like stews I make using alot of veggies and meats in the crockpot. Overnight, the stew becomes really tender and nutritious. Each time he eats about 1 large bowl. If I don't feed him fast enough, he would holler "an an an" which means "eat eat eat" in my language. Anyhow, so far I haven't seen much changes in Lukas yet. There might be really subtle changes.
Grandpa has been really wonderful in taking care of Lukas. My back has been weak lately and I can not carry anything over 10 pounds before my back gives out. So, it's been hard to hold Lukas and I'm grateful that grandpa is doing all the holding.
Anyhoo, I went apartment hunting today and it's either really cheap or really pricey. For Lukas's sake, only the best will do. We are trying to get away from all the smoke here, so we have to stay in the best place. Only those places have no smoking regulations. All other places allow smokers to smoke everywhere, or it doesn't have AC. Here, you definitely need AC. It's so hot and humid here.
There are a number of people here trying to convince me to stay because we seem to get along really well. I respect them and they respect me. We have mutual respect for each other. I want to take this opportunity to take those people for their kind and warm words: Sally and Kim, Debra and Jean, Gabby and Kami, Cris and family, and Bill. But there's a group of people who like to smoke whenever they feel like it; and it's frustrating trying to complain about those people. They just don't follow the rules. There is a designated smoking area now and they don't use it. Some of them do, but most don't. They have to light up whenever and wherever they like.
One of the smokers is a mother of a small baby patient. She is now really angry at me for complaining about the smoking. The thing that really piss me off is how she is taking it out on Lukas. That @$@Q#$%!!!! Let me tell you what happened. This morning, Lukas was using his Rifton walker to take steps down the hall. He's been walking really fast now in his walker. Lukas suddenly stops right in front of that person's door. When she saw Lukas standing in front of her door, she slammed the door in Lukas's face really really really hard and loud. My father was watching this happen and couldn't believe it. I was in the bathroom and had heard the door slamming but wasn't sure what it was. I realized it was that wench slamming the door in Lukas's face. When my father told me about it, I was ready to go over there and beat the hell out of her!! I may be petite, but I got a couple moves I can use if needed. My father calmed me down and told me it's no use stooping down to their level. They are nothing... a bunch of idiots who obviously can't read or understand what "No Smoking" means even after explaining it to them in their native language.
It's simply too hard to enforce a no smoking policy as only some people follow the rules, not all. It only takes one smoker to fill the entire floor of smoke and for all of us to inhale the second hand smoke. Gabby, a very nice and sweet Romanian patient here, told me that they (the smokers) can wait a few minutes and go to the designated area to smoke. Why do they have to light up right away and break the rules. Just like when they run out of cigarettes, they have to wait and go to the store to buy a new pack. So they can wait just the same to go to the designated area to light up. Well, what Gabby said really makes sense. But, there's only some of us who feel this way.
Anyhow, take care y'all and I'll let you know when we move out. Thanks everyone for reading this blog and praying for Lukas. That's what's important. I want to move out to get away from all this negativity and just focus on Lukas's healing. I don't want to deal with all the smoking issue and how other's anger is directed towards my child!!!
Tuesday, October 10, 2006
It's now Wednesday, around 1:43pm local time. Lukas had therapy this morning at 9am. Grandpa took him because I had to go to the local Public Service Bureau to see if I can apply for another visa entry permit into China. We are thinking of travelling to Hong Kong (only takes 1 hour drive) to do some research and come back same day. So we have to apply for another visa.
Then Lukas took a nap and just woke up for his lunch at around 1pm. He's now playing with grandpa and I will get some work done for the day including doing some apartment hunting. I had mentioned that I still have the smoking problem on the 14th floor. I've contacted all the powers that be to see if they can enforce this policy in some ways. And so far, they come up with one solution which is for the smokers to smoke in the stairs close to the exit doors. ---RITA--- I think your room will be next to this exit stairs from what the staff told me. I am on the other side of the floor. Anyhoo, starting today hopefully people will agreed to the policy. We'll see. In any case, I'm doing some apartment hunting today and tomorrow. If I find something suitable I will move out. SUSAN --- I should have taken your advice and found a place beforehand. Although it may not be as convenient for us, I think my son's health outweighs all those problems. So, I will make my decision to stay in the hospital or not as soon as I do some research.
As far as treatment goes, the doctors and nurses have been very nice and helpful. There are communication issues, because the doctors and nurses can speak alittle English. And the coordinators are accommodating but they have to take care of many people here as well. And I am lucky to have a local friend so I do not want to bother the coordinators as much. Overall, the staff here is wonderful so far.
Also I went to check our Lo Hou next to the Hong Kong border and it's huge. So much cheap and fake stuff. So Rita, I will take you there. You can buy everything and bring it back to the U.S. to sell it on Ebay. :)
For today, Lukas will ahve therapy again at 2:10 pm, followed by dinner. Then he will play a few hours and then go to sleep. As for me, I need to leave now and check out a few places and go to the grocery store.
Thanks for reading this blog!
Then Lukas took a nap and just woke up for his lunch at around 1pm. He's now playing with grandpa and I will get some work done for the day including doing some apartment hunting. I had mentioned that I still have the smoking problem on the 14th floor. I've contacted all the powers that be to see if they can enforce this policy in some ways. And so far, they come up with one solution which is for the smokers to smoke in the stairs close to the exit doors. ---RITA--- I think your room will be next to this exit stairs from what the staff told me. I am on the other side of the floor. Anyhoo, starting today hopefully people will agreed to the policy. We'll see. In any case, I'm doing some apartment hunting today and tomorrow. If I find something suitable I will move out. SUSAN --- I should have taken your advice and found a place beforehand. Although it may not be as convenient for us, I think my son's health outweighs all those problems. So, I will make my decision to stay in the hospital or not as soon as I do some research.
As far as treatment goes, the doctors and nurses have been very nice and helpful. There are communication issues, because the doctors and nurses can speak alittle English. And the coordinators are accommodating but they have to take care of many people here as well. And I am lucky to have a local friend so I do not want to bother the coordinators as much. Overall, the staff here is wonderful so far.
Also I went to check our Lo Hou next to the Hong Kong border and it's huge. So much cheap and fake stuff. So Rita, I will take you there. You can buy everything and bring it back to the U.S. to sell it on Ebay. :)
For today, Lukas will ahve therapy again at 2:10 pm, followed by dinner. Then he will play a few hours and then go to sleep. As for me, I need to leave now and check out a few places and go to the grocery store.
Thanks for reading this blog!
Monday, October 09, 2006
It's funny how people don't listen to the rules here. There are rules, but how to enforce them is an issue. There is NO SMOKING at the hospital but they still smoke. I was furious yesterday because the Europeans were huffing and puffing on our floor, right next to my room!!! I was furious... The staff is trying to address the situation. But, it's hard for them to tell their "clients" or client's family members to not smoke, or "get out." They want to please everyone, including the smoker clients I guess. So, they put up a no smoking sign in the balcony right outside my door. AND GUESS WHAT? The Europeans move down the hallway to the other balcony to smoke or in kitchen or out the window! So far the situation is not completely resolved; the problem is just swept under the rug to temporarialy diffuse my frustration. So, my friends who are about to take their kids to Shenzhen for treatment. Please support me in this fight against smoking on the stem cell floor. I need each of you to email KIRSHNER, JON, and GRACE and tell them it's completely unacceptable for people to be allowed to smoke anywhere on the 14th floor. The air quality is affected. My son and I have allergies, especially to smoking. I came here for my son's treatment, NOT SO WE CAN GET SECOND HAND SMOKING DISEASES!!! We all sacrifice ourselves to be here, for the treatment of ourselves or our family member. However, some people just think about themselves and their addiction, and don't care about the patients health here!!! Potential future stem cells business is important to this hospital and Beike Int'l, so please tell them you are behind me on this issue and that you would consider other options if they don't fix this problem. No, not mask the problem like they do now. FIX IT COMPLETELY!!!!!
--------------------BACK to LUKAS'S STEM CELL TREATMENT BLOG----------------
It's Tuesday morning right now. Lukas has a great day yesterday. He was fine and happy until he got the stem cell treatment through IV. He was screaming so much for about 20 minutes (the time it took for all the liquids to drip into his wrist by IV). I think from now on we will just go in the spinal injection. He will be sedated and it will be a quick in and out thing... We won't have to hear him scream so much!
First the nurse put the IV in; then she injected a small amount of clear liquids. I was told this liquid is to help the body accep the stem cell and prevent reactions. Then the IV is connected to a small bag of yellow liquids. This bag contains NGF (nerve growth factor) mixed with stem cells. Then, she connected the IV to a bag with saline (to wash the tubes so Lukas will get every little drop of the yellow liquids). The IV was done at 4PM. Afterwards, I feed Lukas dinner and he slept all the way until 11 PM. He stayed up until 1 AM and slept again until 6 AM. Overall, we did not see any reactions or anything different about him. He seemed completely fine and happy. Improvements you ask? Not so soon!!! :) I was told it will take 1 1/2 weeks for you to see results. So I'll report than when I see anything different about Lukas.
Before the injection, the physical therapy doctor (yes, here you have to be a doctor to do physical therapy) did a baseline evaluation for Lukas. He got only a handful of pluses (they put a + if you ca do certain things, and - if you can't) such as lifting his head up okay, vocalizing a bit, etc. The checklist had about 100 questions of Lukas's abilities, and he only got about 5 plus signs. So we will see at the end of the treatment if Lukas will get more pluses. :) hehehe
Yesterday, I did not go out much because I wanted to be around Lukas the whole day. However, I did go grocery shopping because I've been making stews for Lukas. He seems to really like it alot. I bought a crock pot two days ago and it's been really useful. I would prepare the meats and veggies at night, throw it in the crock pot, and by morning there will be a nice stew waiting for Lukas to eat breakfast with. It's good food for him since all the restaurants here us alot of MSG in their foods.
It's been kinda hectic because I want to familiarize myself with everything around the hospital and neighborhood. It's really frustrating trying to get things done in a timely matter since no one can help you find stuff and you have to wonder about the store yourself. But I'm getting it done that's for sure. :) Rita, I can help you when you get here this Saturday. :)
Just a few things I wanted to add for those travelling to Shenzhen:
1 - They don't accep tips.
2 - Leave your credit card at home. Even the big stores won't accept your credit cards; or maybe they don't want to. Everything is cash only, unless you have a local credit card.
3 - Cars do not yield for you. You yield to them. I almost got ran over a couple times cuz I didn't see the cars driving illegally. Actually, here, there's no such thing as driving illegally because you can drive ANY way you want and it's okay. You got people making U-turns, stopping in the middle of an expressway to let passengers off or pick them up, trying to run over pedestrians when we have a "green walk sign" right of way... They don't care, they just beep you no matter who has the right of way. :) Cars and people every where.
--------------------BACK to LUKAS'S STEM CELL TREATMENT BLOG----------------
It's Tuesday morning right now. Lukas has a great day yesterday. He was fine and happy until he got the stem cell treatment through IV. He was screaming so much for about 20 minutes (the time it took for all the liquids to drip into his wrist by IV). I think from now on we will just go in the spinal injection. He will be sedated and it will be a quick in and out thing... We won't have to hear him scream so much!
First the nurse put the IV in; then she injected a small amount of clear liquids. I was told this liquid is to help the body accep the stem cell and prevent reactions. Then the IV is connected to a small bag of yellow liquids. This bag contains NGF (nerve growth factor) mixed with stem cells. Then, she connected the IV to a bag with saline (to wash the tubes so Lukas will get every little drop of the yellow liquids). The IV was done at 4PM. Afterwards, I feed Lukas dinner and he slept all the way until 11 PM. He stayed up until 1 AM and slept again until 6 AM. Overall, we did not see any reactions or anything different about him. He seemed completely fine and happy. Improvements you ask? Not so soon!!! :) I was told it will take 1 1/2 weeks for you to see results. So I'll report than when I see anything different about Lukas.
Before the injection, the physical therapy doctor (yes, here you have to be a doctor to do physical therapy) did a baseline evaluation for Lukas. He got only a handful of pluses (they put a + if you ca do certain things, and - if you can't) such as lifting his head up okay, vocalizing a bit, etc. The checklist had about 100 questions of Lukas's abilities, and he only got about 5 plus signs. So we will see at the end of the treatment if Lukas will get more pluses. :) hehehe
Yesterday, I did not go out much because I wanted to be around Lukas the whole day. However, I did go grocery shopping because I've been making stews for Lukas. He seems to really like it alot. I bought a crock pot two days ago and it's been really useful. I would prepare the meats and veggies at night, throw it in the crock pot, and by morning there will be a nice stew waiting for Lukas to eat breakfast with. It's good food for him since all the restaurants here us alot of MSG in their foods.
It's been kinda hectic because I want to familiarize myself with everything around the hospital and neighborhood. It's really frustrating trying to get things done in a timely matter since no one can help you find stuff and you have to wonder about the store yourself. But I'm getting it done that's for sure. :) Rita, I can help you when you get here this Saturday. :)
Just a few things I wanted to add for those travelling to Shenzhen:
1 - They don't accep tips.
2 - Leave your credit card at home. Even the big stores won't accept your credit cards; or maybe they don't want to. Everything is cash only, unless you have a local credit card.
3 - Cars do not yield for you. You yield to them. I almost got ran over a couple times cuz I didn't see the cars driving illegally. Actually, here, there's no such thing as driving illegally because you can drive ANY way you want and it's okay. You got people making U-turns, stopping in the middle of an expressway to let passengers off or pick them up, trying to run over pedestrians when we have a "green walk sign" right of way... They don't care, they just beep you no matter who has the right of way. :) Cars and people every where.
Sunday, October 08, 2006
I guess I'll give y'all an update for Sunday as well. Lukas and I woke up at 3:30 A.M., Sunday morning. Lukas goes back to sleep after he plays for 1 hour. I haven't slept since and it's now 11:30 P.M. :)
While Lukas was sleeping I was doing some research on what kind of Chinese dictionary are available. I guess I really want to buy one, but the ones here are for Chinese people so the buttongs, etc., are in Chinese. I was also chatting with my mom and hubby for a long time. By the way, I want to share a wonderful service called SKYPE. You can sign up for an online account, pay them $10 dollars, buy a headset, and you can call anyone in the world for 1-2 cents/minute. Isn't this awesome! The party you call does not need to have a SKYPE account, but you do. Anyhow, it's pretty cool. Then it was 7:00 A.M. and I discussed with the doctor about Lukas stem cell treatment tomorrow. They have about 8 scheduled including Lukas. The stem cell will be delivered by IV this time. Next time he will get stem cells injected into his spinal fluids.
At 7:30 A.M., I got ready to go to church. Yes, we have to go to church on Sundays even in a foreign country. Of course we didn't understand a thing in church, but it was nice. Everyone keeps staring at Lukas. In fact, everyone keeps staring at Lukas in general. I don't like that. In the U.S., people are courteous enough to not stare; they simply mind their own business. Occasionally you get someone whose curious. Here, they stare, point, etc. And, when Lukas cries uncontrollably, I don't know how to explain to those who ask that Lukas is a sick baby; that he has a brain injury. Oh well... We got out of church at 10:30 A.M., and then went for lunch. As usual, it's not that cheap. There are really cheap food, but I don't want to risk getting food poisoning, etc. Lukas got really cranky during the feeding and so I end up eating while holding him and standing. I do that pretty often actually.
At 2:30 P.M, Lukas had therapy on the 4th floor. He did okay, but cried the last 10 minutes. Then I went shopping. I wanted to cook for Lukas since everyone uses MSG here. It's not healthy. So I bought a crock pot and lots of veggies and bones. I made a stew for Lukas to have for breakfast tomorrow.
On a side note, it's so boring the in room. I should have brought my stereo. Although I'm having troubles using the power converter anyways so that wouldn't help.
---Read below if you have time and want to hear about some of my experience while shopping--
First adventure: "Helping others in small ways"
I was walking around to familiarize myself with the area when I saw a confrontation happen. There was this lady who is a street vendor. In fact, she has a sac full of grapes who wanted to sell. She was sitting there when a guy came out of no where and didn't see her produce so he ran straight into it. All the grapes went flying and got smashed. Anyhow, the guy ran away after that and vendor was furious. She was an old lady. She went ballistic. She was screaming and crying and calling the cops (who didn't do anything). She was really really sad that it made me kinda sad too. In fact, I was trying hard to hold my tears back. I know how she feels. Sometimes things happen unexpectedly and you have to endure it. I understand her harship and how much those grapes meant to her; it was a living and a source of income to feed her family. I felt so bad for her, I paid for all the damaged grapes, which wasn't much at all, $15 US dollars. But, to her it was alot. She was still crying while saying "xie xie" (thank you in Chinese). I replied "Bu Ke Chi" which I guess is you're welcome. :)
Second adventure: "When being duped, call your friend who can speak the local language" :)
I went shopping at the department store which sells everything from grocery to clothing to purses and shoes. Anyhow, they sometimes have promotions where you spend $200 RMB (about $25), you get $100 RMB credit rebate. After you finish all your shopping, you go to the very top floor of the mall and submit all the receipts. They will add everything up and give you a card with credit on it. Maggie, my local friend, showed me how to do this a few days ago so I am really familiar with this process. Without her, I would not have known to go through this process to get a "rebate." Anyhoo, today I went shopping for a few items like the crock pot, etc., and sunglasses (I should have brought mine darn). So, I told them I wanted to get the rebate and one of the translators told me the things I bought are not part of the rebate promotion. I told me they are wrong so I called my friend Maggie. After talking to Maggie, they quickly changed the story and said I could get the rebate. I had to go through this maze in order to get to the rebate center. After processing, they gave me a card with credit on it. So I can use it to buy groceries in the future. So, a local friend is wonderful. Otherwise, I would not have known about these promotions or stand up for my rights. :)
As I was walking back to the hotel I saw some roast ducks and meats hanging in a restaurant window. I couldn't contain myself so I bought some. Their BBQ meats are beyond excellent, but I prefer roast duck in the US. It's kinda bland here and you have to dip it into several kinds of sauces.
While Lukas was sleeping I was doing some research on what kind of Chinese dictionary are available. I guess I really want to buy one, but the ones here are for Chinese people so the buttongs, etc., are in Chinese. I was also chatting with my mom and hubby for a long time. By the way, I want to share a wonderful service called SKYPE. You can sign up for an online account, pay them $10 dollars, buy a headset, and you can call anyone in the world for 1-2 cents/minute. Isn't this awesome! The party you call does not need to have a SKYPE account, but you do. Anyhow, it's pretty cool. Then it was 7:00 A.M. and I discussed with the doctor about Lukas stem cell treatment tomorrow. They have about 8 scheduled including Lukas. The stem cell will be delivered by IV this time. Next time he will get stem cells injected into his spinal fluids.
At 7:30 A.M., I got ready to go to church. Yes, we have to go to church on Sundays even in a foreign country. Of course we didn't understand a thing in church, but it was nice. Everyone keeps staring at Lukas. In fact, everyone keeps staring at Lukas in general. I don't like that. In the U.S., people are courteous enough to not stare; they simply mind their own business. Occasionally you get someone whose curious. Here, they stare, point, etc. And, when Lukas cries uncontrollably, I don't know how to explain to those who ask that Lukas is a sick baby; that he has a brain injury. Oh well... We got out of church at 10:30 A.M., and then went for lunch. As usual, it's not that cheap. There are really cheap food, but I don't want to risk getting food poisoning, etc. Lukas got really cranky during the feeding and so I end up eating while holding him and standing. I do that pretty often actually.
At 2:30 P.M, Lukas had therapy on the 4th floor. He did okay, but cried the last 10 minutes. Then I went shopping. I wanted to cook for Lukas since everyone uses MSG here. It's not healthy. So I bought a crock pot and lots of veggies and bones. I made a stew for Lukas to have for breakfast tomorrow.
On a side note, it's so boring the in room. I should have brought my stereo. Although I'm having troubles using the power converter anyways so that wouldn't help.
---Read below if you have time and want to hear about some of my experience while shopping--
First adventure: "Helping others in small ways"
I was walking around to familiarize myself with the area when I saw a confrontation happen. There was this lady who is a street vendor. In fact, she has a sac full of grapes who wanted to sell. She was sitting there when a guy came out of no where and didn't see her produce so he ran straight into it. All the grapes went flying and got smashed. Anyhow, the guy ran away after that and vendor was furious. She was an old lady. She went ballistic. She was screaming and crying and calling the cops (who didn't do anything). She was really really sad that it made me kinda sad too. In fact, I was trying hard to hold my tears back. I know how she feels. Sometimes things happen unexpectedly and you have to endure it. I understand her harship and how much those grapes meant to her; it was a living and a source of income to feed her family. I felt so bad for her, I paid for all the damaged grapes, which wasn't much at all, $15 US dollars. But, to her it was alot. She was still crying while saying "xie xie" (thank you in Chinese). I replied "Bu Ke Chi" which I guess is you're welcome. :)
Second adventure: "When being duped, call your friend who can speak the local language" :)
I went shopping at the department store which sells everything from grocery to clothing to purses and shoes. Anyhow, they sometimes have promotions where you spend $200 RMB (about $25), you get $100 RMB credit rebate. After you finish all your shopping, you go to the very top floor of the mall and submit all the receipts. They will add everything up and give you a card with credit on it. Maggie, my local friend, showed me how to do this a few days ago so I am really familiar with this process. Without her, I would not have known to go through this process to get a "rebate." Anyhoo, today I went shopping for a few items like the crock pot, etc., and sunglasses (I should have brought mine darn). So, I told them I wanted to get the rebate and one of the translators told me the things I bought are not part of the rebate promotion. I told me they are wrong so I called my friend Maggie. After talking to Maggie, they quickly changed the story and said I could get the rebate. I had to go through this maze in order to get to the rebate center. After processing, they gave me a card with credit on it. So I can use it to buy groceries in the future. So, a local friend is wonderful. Otherwise, I would not have known about these promotions or stand up for my rights. :)
As I was walking back to the hotel I saw some roast ducks and meats hanging in a restaurant window. I couldn't contain myself so I bought some. Their BBQ meats are beyond excellent, but I prefer roast duck in the US. It's kinda bland here and you have to dip it into several kinds of sauces.
Saturday, October 07, 2006
Ni hao Everyone! I'm trying my best to learn Chinese... but it's not working out too well. Good thing I can wave my arms and legs to try to explain things. Pretty interesting.
Things are settling down alittle. Lukas had physical therapy today for 1 hour. He did okay. Stem cell treatment will happen on Monday; so we are excited. Tomorrow we will go to church for Sunday mass. Oh joy, I'm sure we won't understand a single thing. I guess we'll just sit and stand when we see everyone else doing it. :)
Food in Shenzhen is either really really expensive $70-$100 US dollars per meal, or really really cheap like $2-4 per meal. We tried both and Lukas and Grandpa had the runs really badly at the cheap restaurants. I'm trying to find a middle ground restaurant, but no luck yet. We will continue to explore. Some people here are cooking their own meals. But with Lukas's treatment being so intense, and his constant need for attention and crying, it's too hard to go grocery shopping and cook. I've considered hiring someone to help out since the cost of labor here is so cheap. Retail is not cheap, but labor is cheap. So when we go to a restaurant, there would be a billion waiters and waitresses. Everyone is ready to help you til the end. And, they DO NOT accept tips!!! In fact, they get really surprised and they frankly refuse tips. So don't tip in Shenzhen!!! :) I guess that's a good thing... sort of. I feel bad because these people work so hard for you, make so little, and yet they will not accept tips. I think it's a management policy, not because the workers don't want to accept the tips. Their peers and boss will frown at them for accepting tips.
Anyhow, I'm trying to explore the area with my dad and Lukas. Today, I decided I would try to get my hair washed at the store. I just wanted to try it out; and it only cost $4 for the service. I was SO SURPRISED because they clean and massage your head and body for over 1 hour. I expected to be in and out in less than 30 minutes. I end up leaving the place after 1.5 hours. Wow! I was getting impatient and wanted to leave right away. But I decided to stick to it and experience this hair washing service til the end. I also decided to get my nails done while my hair was meticulously worked on. Getting a manicure cost $2.50 US dollars. So why not right? :)Gosh, they did such a thorough job. And NO NO NO TIPS. Interesting... but good for us visitors I guess. My friend Maggie said that Shenzhen does not want to create this custom of "tipping" because although foreigners can afford to tip, the locals can not. So, they do not want to have all this tipping business. :)
Well, I'll report to you all on Monday regarding Lukas's first stem cell treatment. Hopefully, everything will be okay!
Things are settling down alittle. Lukas had physical therapy today for 1 hour. He did okay. Stem cell treatment will happen on Monday; so we are excited. Tomorrow we will go to church for Sunday mass. Oh joy, I'm sure we won't understand a single thing. I guess we'll just sit and stand when we see everyone else doing it. :)
Food in Shenzhen is either really really expensive $70-$100 US dollars per meal, or really really cheap like $2-4 per meal. We tried both and Lukas and Grandpa had the runs really badly at the cheap restaurants. I'm trying to find a middle ground restaurant, but no luck yet. We will continue to explore. Some people here are cooking their own meals. But with Lukas's treatment being so intense, and his constant need for attention and crying, it's too hard to go grocery shopping and cook. I've considered hiring someone to help out since the cost of labor here is so cheap. Retail is not cheap, but labor is cheap. So when we go to a restaurant, there would be a billion waiters and waitresses. Everyone is ready to help you til the end. And, they DO NOT accept tips!!! In fact, they get really surprised and they frankly refuse tips. So don't tip in Shenzhen!!! :) I guess that's a good thing... sort of. I feel bad because these people work so hard for you, make so little, and yet they will not accept tips. I think it's a management policy, not because the workers don't want to accept the tips. Their peers and boss will frown at them for accepting tips.
Anyhow, I'm trying to explore the area with my dad and Lukas. Today, I decided I would try to get my hair washed at the store. I just wanted to try it out; and it only cost $4 for the service. I was SO SURPRISED because they clean and massage your head and body for over 1 hour. I expected to be in and out in less than 30 minutes. I end up leaving the place after 1.5 hours. Wow! I was getting impatient and wanted to leave right away. But I decided to stick to it and experience this hair washing service til the end. I also decided to get my nails done while my hair was meticulously worked on. Getting a manicure cost $2.50 US dollars. So why not right? :)Gosh, they did such a thorough job. And NO NO NO TIPS. Interesting... but good for us visitors I guess. My friend Maggie said that Shenzhen does not want to create this custom of "tipping" because although foreigners can afford to tip, the locals can not. So, they do not want to have all this tipping business. :)
Well, I'll report to you all on Monday regarding Lukas's first stem cell treatment. Hopefully, everything will be okay!
Friday, October 06, 2006
Hello Everyone.
Today started out with alittle drama. The nurse came to take Lukas's blood for the test. His blood has to be checked and double checked. This is a process to see if he's compatible for the stem cell treatment. Their IV for getting blod is not as advanced as ours here. They had to pump Lukas's arm to get blood to squirt into the vials; and yes, there were about 7 vials. Each filled about 1/4 of the way. Still, it was alot for a little baby. Lukas screamed his heart out as usual. But, we quickly calmed him down. He relaxed and later fell asleep again.
I went to Walmart Supercenter today to buy a plastic organizer for all the little items. The store is so huge... Everything looks pretty cool, except for the clothing materials. They're very hard fabric. Walmart in the states have some nice clothes at least. Here, the fashion is so... I don't know how to put it.... very plain... no beyond plain. :) I finished up the rest of my list of things to buy because Rainbow Super Market didn't have some items. So, without my wonderful friend Maggie, it took me about 3 hours to roam around and find everything. :) When I got into some problems, I would call poor Maggie up. I feel bad for bother her so much but you gotta do what you gotta do. :) I wish I could get one of those electronic English/Chinese dictionary devices. Some people doing treatment here in China was smart enough to bring one. And I didn't of course. The device allows you to type anything in English and it will translate it into Chinese words, and PRONOUNCE it too!!! And, you can have people write in Chinese and it will transcribe it into English words and PRONOUNCE it too. I wish I had one of those things. It would come in handy. So, take note my friends who are going to China for stem cell treatment. Please bring one of those!!!
Today was another hot and humid day. Why did I pack my autumn clothes for? We had some nice lunch and went back to rest. It's so hot. Then the doctor interviewed me for 1 hour about Lukas. They reassured me everything will be great. I told them I will pay for Lukas's treatment after everything goes well with the first injection. Depending on how things go after that first injection, we will decide to do 4 or 6 or maybe even 8 injections for Lukas over 1-2 months timeframe. We'll see I guess how things go. Treatment begins Monday, so I'll keep you all posted.
Take care all my wonderful family members and friends. Please pray for Lukas. And thanks for all your kind words Chi Tylie, Mark, Khanh, Bob, Rita, Cindy, and Nathan. We really appreciate it!!!
Today started out with alittle drama. The nurse came to take Lukas's blood for the test. His blood has to be checked and double checked. This is a process to see if he's compatible for the stem cell treatment. Their IV for getting blod is not as advanced as ours here. They had to pump Lukas's arm to get blood to squirt into the vials; and yes, there were about 7 vials. Each filled about 1/4 of the way. Still, it was alot for a little baby. Lukas screamed his heart out as usual. But, we quickly calmed him down. He relaxed and later fell asleep again.
I went to Walmart Supercenter today to buy a plastic organizer for all the little items. The store is so huge... Everything looks pretty cool, except for the clothing materials. They're very hard fabric. Walmart in the states have some nice clothes at least. Here, the fashion is so... I don't know how to put it.... very plain... no beyond plain. :) I finished up the rest of my list of things to buy because Rainbow Super Market didn't have some items. So, without my wonderful friend Maggie, it took me about 3 hours to roam around and find everything. :) When I got into some problems, I would call poor Maggie up. I feel bad for bother her so much but you gotta do what you gotta do. :) I wish I could get one of those electronic English/Chinese dictionary devices. Some people doing treatment here in China was smart enough to bring one. And I didn't of course. The device allows you to type anything in English and it will translate it into Chinese words, and PRONOUNCE it too!!! And, you can have people write in Chinese and it will transcribe it into English words and PRONOUNCE it too. I wish I had one of those things. It would come in handy. So, take note my friends who are going to China for stem cell treatment. Please bring one of those!!!
Today was another hot and humid day. Why did I pack my autumn clothes for? We had some nice lunch and went back to rest. It's so hot. Then the doctor interviewed me for 1 hour about Lukas. They reassured me everything will be great. I told them I will pay for Lukas's treatment after everything goes well with the first injection. Depending on how things go after that first injection, we will decide to do 4 or 6 or maybe even 8 injections for Lukas over 1-2 months timeframe. We'll see I guess how things go. Treatment begins Monday, so I'll keep you all posted.
Take care all my wonderful family members and friends. Please pray for Lukas. And thanks for all your kind words Chi Tylie, Mark, Khanh, Bob, Rita, Cindy, and Nathan. We really appreciate it!!!
Thursday, October 05, 2006
Hi Everyone! The 13.5 hour flight to Hong Kong from San Francisco was pretty horrible. It's so hard to fly for that period of time with a healthy child, needless to say a "special needs" child. Lukas pretty much cried the whole time (unless he's sleeping). Everyone around us was irritated and some even complained to me. Of course, I had to explain to them that Lukas is not a typical child and I've tried everything to console him to no avail. Towards landing, he was crying so much and I had to put him in the carseat. I was on the verge to breaking down into tears, but I stopped it. I was just so sad for Lukas to have to go through this. I'm not even going to think about how to handle taking Lukas back to the States for a 15 hour flight. All in all, I hope something positive will come out of this for Lukas.
Then, we arrived safely. The only good thing about that flight was how smooth the pilot did the take off and landing - no ear pressure at all! The taxi driver drove us from Hong Kong into China. That again was another nightmare. Apparently the driver had some immigration problem and so he was detained. While the Chinese officials interrogated him, we waited for 2 hours in the van breathing in all that fume. They refused to let us leave the van and go into the lobby area. Finally, the driver called his partner to come and finish the drive for us into China. As you know, once the van is "flagged," it's bad news from there. So we went through so many other security clearance check points (while other cars passed us by quickly) and had to open the boxes, etc. Lukas wasn't feeling so well this whole time. He was sneezing alot with a runny nose; he was so flushed. He didn't sleep or ate well during the flight, so he was really exhausted and sick. I started re-thinking whether this decision we made was a good one or not. I'll keep you posted I guess.
Finally, after 4 hours (it only takes about 1 hour to get into China from Hong Kong), we finally arrived at the hospital. What an ordeal! Well, the hospital is nice, clean, and spacious. We decided to save money by staying at the hospital, which I'm not sure if it's a good idea or not. There's alot of noises around. At worst, we'll probably move to a hotel and take Lukas in every day for treatments and therapies.
I'm so fortunate that my sister-in-law, Tylie, introduced me to her friend who lives in Beijing. In turn, this friend introduced me to his friend in Shenzhen. So now I have an awesome friend named Maggie in Shenzhen. You can't imagine how wonderful this is!!! I guess all this bad luck was cancelled out by us meeting Maggie. We instantly connected and she is so nice. She bought Lukas and I a bunch of fruits, and expensive moon cakes. She didn't have to but it's so awesome. She then took us to lunch (and I fought hard to pay the bill, but she won), and took me shopping. Since I figured buying stuff in China is inexpensive, I would pack light and buy what I need in China. Bad and good news. The good news is, Maggie took me to the super department store and helped me buy everything I needed. The bad news is, everything they sell here is not like items in the U.S. So, you kinda have to settle for a different quality of items I guess. Take paper towels for example. Good luck finding the rolls we use in the States. They have us single paper towels which is not convenient to use. And who said it was inexpensive? I spent about $100 U.S. dollars on some items to use in the hospital like gloves, dishes detergent etc. Btw, Chinese hospitals do not use gloves that often so there aren't any gloves around.
Lastly, but most importantly, I want to thank all the people who made this trip possible. Thanks so much Mr. & Mrs. Khanh Nguyen, Mr. & Mrs. Mark Gong, and Mr. & Mrs. Nhan Tran (grandma and grandpa) for financially supporting this trip. Thanks Chi Yen and Tylie for donating miles and connecting me with Maggie here in Shenzhen. Thanks to all of Lukas's family and relatives for all your love, support, and prayers. Without these, our trip wouldn't be possible either.
I'm trying to keep myself busy so I can go to sleep at 10 p.m. local time to get used to the local hours. But, I feel like collapsing right now. I can barely move my fingers. I'll post more things as the come up.
Then, we arrived safely. The only good thing about that flight was how smooth the pilot did the take off and landing - no ear pressure at all! The taxi driver drove us from Hong Kong into China. That again was another nightmare. Apparently the driver had some immigration problem and so he was detained. While the Chinese officials interrogated him, we waited for 2 hours in the van breathing in all that fume. They refused to let us leave the van and go into the lobby area. Finally, the driver called his partner to come and finish the drive for us into China. As you know, once the van is "flagged," it's bad news from there. So we went through so many other security clearance check points (while other cars passed us by quickly) and had to open the boxes, etc. Lukas wasn't feeling so well this whole time. He was sneezing alot with a runny nose; he was so flushed. He didn't sleep or ate well during the flight, so he was really exhausted and sick. I started re-thinking whether this decision we made was a good one or not. I'll keep you posted I guess.
Finally, after 4 hours (it only takes about 1 hour to get into China from Hong Kong), we finally arrived at the hospital. What an ordeal! Well, the hospital is nice, clean, and spacious. We decided to save money by staying at the hospital, which I'm not sure if it's a good idea or not. There's alot of noises around. At worst, we'll probably move to a hotel and take Lukas in every day for treatments and therapies.
I'm so fortunate that my sister-in-law, Tylie, introduced me to her friend who lives in Beijing. In turn, this friend introduced me to his friend in Shenzhen. So now I have an awesome friend named Maggie in Shenzhen. You can't imagine how wonderful this is!!! I guess all this bad luck was cancelled out by us meeting Maggie. We instantly connected and she is so nice. She bought Lukas and I a bunch of fruits, and expensive moon cakes. She didn't have to but it's so awesome. She then took us to lunch (and I fought hard to pay the bill, but she won), and took me shopping. Since I figured buying stuff in China is inexpensive, I would pack light and buy what I need in China. Bad and good news. The good news is, Maggie took me to the super department store and helped me buy everything I needed. The bad news is, everything they sell here is not like items in the U.S. So, you kinda have to settle for a different quality of items I guess. Take paper towels for example. Good luck finding the rolls we use in the States. They have us single paper towels which is not convenient to use. And who said it was inexpensive? I spent about $100 U.S. dollars on some items to use in the hospital like gloves, dishes detergent etc. Btw, Chinese hospitals do not use gloves that often so there aren't any gloves around.
Lastly, but most importantly, I want to thank all the people who made this trip possible. Thanks so much Mr. & Mrs. Khanh Nguyen, Mr. & Mrs. Mark Gong, and Mr. & Mrs. Nhan Tran (grandma and grandpa) for financially supporting this trip. Thanks Chi Yen and Tylie for donating miles and connecting me with Maggie here in Shenzhen. Thanks to all of Lukas's family and relatives for all your love, support, and prayers. Without these, our trip wouldn't be possible either.
I'm trying to keep myself busy so I can go to sleep at 10 p.m. local time to get used to the local hours. But, I feel like collapsing right now. I can barely move my fingers. I'll post more things as the come up.