We have had a rough few days. Drew has been miserable. He doesn’t sleep. He screams all the time. He’s super tight. He vomits several times a day. He had a low grade temp yesterday and if he has one today then he cannot have the lumbar puncture. Mike and I are super stressed about the temperature. Also, all of the changes we noticed before have definately disappeared.
The only good news I have is that we were able to switch rooms. We no longer have to listen to elevators flanked on each side of us go up and down the entire night. In the old room there was some idiot smoking in the bathroom one floor below us. So it would drift up through the vent and fill the entire room. Luca talked with the nurse manager down there so hopefully people will smoke outside.
I don’t know if I mentioned but this is mostly a birthing hospital. We are on the 20th floor. The 19th floor is for VIP patients which means wealthy patients. The 18th floor is another stem cells unit only for the chinese. At least this is what we heard.
I just had Drew’s temp taken and it was 37.2 which is normal. His lumbar puncture is at 3pm. I’m sure we’ll post something before everyone wakes up.
I forgot to mention that the stem cells can make people irritable. One of the nurses seems to think this is why Drew is acting up.
I also forgot to mention that Drew had a free photo shoot on Monday. We were out shopping and someone flagged us down and practically begged to take Drew’s pics. We went to the studio and it was pretty upscale. We saw some samples of their albums and they are pretty impressive. They spent 3 hours taking our photos. Photos of Drew didn’t last too long b/c there is only so many ways you can position him. If I get into that it’ll make everyone cry.
So anyways we got a lot of goofy pictures with Mike and Drew. Then they took us to this really pretty lake nearby. I’d have to say the scenery blew Hawaii out of the water. We’ve never seen anything as picturesque as this lake with mountains in the background. We had a good time because Rebecca had to translate what the photographer wanted us to do and we ended up in funny positions. Instead of an album of Drew he is going to make a family album which is really nice of him. The studio advertises only baby photos that we saw. We should get our album sometime this week.
Kristin
August 6th, 2008
Today I joined a couple people here for a classic chinese foot massage. It was only $11 USD for 80 minutes. It’s looked down upon here to tip. In fact if the manager saw me tipping the staff they could be fired!
As far as the massage goes, it was quite the experience! There was a lot of slapping, which of course made it extremely hard for me not to burst out laughing. The guy would be massaging my foot then all of a sudden slap it! I’m laughing just thinking about it. At one point I heard the click of a lighter and saw flames near my feet. My feet moved like lightening out of the way. I’m surprised I didn’t club him with my big american feet. Everyone was laughing, so luckily I didn’t insult him. What they do is dump oil in a little glass cup and light it on fire. Then they create a suction by putting it on the bottom of your foot and the heat is supposed to feel really good. I think it’s called cupping.
I’m trying to get Mike to go the next time other patients from the unit go. His big platypus feet would have them clucking for years! In fact, they don’t carry his size 11 in any stores we’ve come across.
As far as how Drew is doing, he is excellent. He slept the entire night and then Mike brought him into bed with me at 730. Then the two of us slept until 930! Mike left the room because our symphony of snores could knock your socks off.
Drew is also eating quite well and to top it off, he minds his manners in public. When we go on walks he is very quiet and likes to eyeball everyone. When we stop to talk with someone he still protests but after a few minutes. He is much more relaxed. I actually got him in the crawling position with his head straight up in the air with almost no problems. He didn’t arch or anything! Usually he would contort his body into a rainbow and you would feel like you were breaking his back. In fact, his arch was so strong, you couldn’t break it up. Although yesterday he supported his weight on his hands with his arms locked so I tucked his knees underhim. Then he just popped his head up to check out his father’s crazy antics. Just like that. I put him in that position 4 more times without much difficulty. After 5 seconds he kind of pushes his legs out. We’ll see if we can take a picture of it soon.
Right now I’m about to enjoy my McDonald’s cheeseburger and my huge strawberry milkshake, or should I say Mike is going to finish off my cheeseburger and Drew is going to devour my shake.
Bai bai,
Kristin
August 3rd, 2008
Even though yesterday started at 3 AM we still had a great day! After Drew woke up he polished off half a tub of yogurt and then ate anything else we could get our hands on. He watched Dora for awhile while we cleaned up the room and by then it was time for lunch. I took him to the Nurses’ station and he sat and hammed it up with everyone there and enjoyed it so much Kristin and I snuck away and had our first lunch without a screaming kid and/or Dora the Explorer on TV since we’ve arrived here! He played with everyone and didn’t cry once for at least 15-20 minutes. This was Drew’s first time with us leaving him with stranger(s) and not having a meltdown. We came back and he had a tattoo of “20F” and it was pretty funny. The joke with 20F is that everything on the floor that’s not nailed down pretty much has this.
After lunch we went to a store called “Times Square” with Rebecca, one of the friendly intepreters here. Its a typical Chinese supermarket with three floors – one for botique shops (almost always on the first floor), one for foodstuffs and another for general merchandise. We spend awhile in the store and although not as nice as RT-Mart (near the hospital) it was quite large (about 1/2 the size of Target). This was our first time going out in public with an interpreter and she told us what everyone was saying which was good to hear. One couple thought that Drew looked so huge he was three or four years old. While feeding Drew some water in a sippy cup a crowd ensued as usual – we even got a picture this time! A manager of a photography studio kept on bugging us to get his picture taken at his place and was pretty persistent. Finally she made an offer to do a photo album of Drew for free as long as she could keep one to use as advertising! Drew’s photo session will be this Monday at 2:30 PM (2:30 AM for most people reading this) and we’ll get his photo album later in the week. Drew was very well behaved yesterday and didn’t complain once the whole two hours we were out, including the 20 minutes outside in the heat to get there/back in the heat.
Dinner was amazing and one of the nurses here stayed after work and had her brother help cook with her. Another guy on the floor named James cooked a meal also and we had a ton of Asian-style food to eat. We had rice with egg, snow peas, beef w/peppers onions and a light curry sauce, fresh (as in they were alive 20 minutes ago) shrimp , tomatoe & egg, potato salad (not the western kind), and a few other things that were good.
Drew slept the entire night once without waking up either this time. We might have to start keeping track now.
A few people have been asking me if they’ve seen me before since I got to China and I thought I was going nuts. Prison Break is a huge show in China. Most US TV shows and movies are readily available and streaming online from http://www.baidu.com. Apparently since shaving my head I now look like a guy on the show played by Wentworth Miller. Time to get prison fit and some tats.
-Kristin, Drew & Mike
August 3rd, 2008
Drew had his second stem cell treatment yesterday via spinal injection/lumbar puncture. The nurses came in and started up the IV which Drew didn’t appreciate and then transferred to the room where they do procedures while in his crib. Wouldn’t you know that the little rat was laughing like a maniac when he was wheeled out of our arms and into the treatment room. They shut the opaque glass door and we could still hear him laughing! Here we were shaking in our sandals and the little brat was enjoying himself at our expense. I never thought in a million years that drew would behave himself and we’d even get a laugh out of this.
Drew was in there for 25 minutes and received the stem cell through the lumbar puncture. He received local anesthesia before the actual lumbar puncture, to eliminate any pain. They also gave him Valium through his IV along with the normal saline running. We only heard one little yelp and then the staff laughing with our little clown.
He came rolling out with growth factor infusing in his veins and a gauze patch on his back. He looked really relaxed but wide awake checking everyone out. He definitely didn’t look like a person given a dose of Valium. We’re starting to think that Valium has the opposite effect on him and makes him stay up instead.
We waited out in front of the treatment room for the growth factor to finish up so we had a chance to watch the other two toddlers finish up with their lumbar punctures. Wouldn’t you know that they came out snoring away. In fact, the parents told us later that they slept for another two hours after.
After a lumbar injection it is important to stay flat on your back to prevent spinal headaches and to enhance the effect of the stem cells for at least 4 hours. Drew of course was wide awake during the entire time. We got him up for an hour after the 4 hours were up and he did just fine. He never spiked a temperature or have nausea/vomiting.
He had slight discomfort at 9pm and received some Motrin. Of course he woke up at his usual in the early morning (2-3 AM). I don’t know why I didn’t learn my lesson with the Valium the first several times but I requested another round through his IV. Big surprise….he didn’t fall asleep. Benadryl doesn’t work on him either. I’m already nervous about his college days 16 years from now. He’ll probably clear out the local liquor stores!
As far as the stem cell treatments that he’s had so far, I’ve noticed some things but it’s too early to make definites. One big thing is that he hasn’t thrown up in 5 days (I’m probably jinxing myself). He usually throws up at least once a day so we definitely love being vomit free. I’m sure the cleaning staff is loving it too. What is really impressive is that he’s done some heavy crying for several minutes at times and he doesn’t throw up. He always could make himself throw up after 10-15 seconds of crying heavily.
Other things we’ve noticed since the first treatment is that he’s vocalizing different consonants and vowels. He also will imitate several of the sounds that you make to him.
His hands are a little less tight and his head control has improved. Mike has noticed that he has a lot more energy but its probably because he hasn’t had his stander to wear him out. It’s only been a few days since his first treatment and he still has 4 more to go. I’m going to push for the lumbar punctures because the doctors here say it is better than the IV infusions.
Mike & Kristin
August 2nd, 2008
I wanted to clarify what I was babbling on about with all of the staring. In the states everyone is used to mulitple cultures with different looking people, a “melting pot.” Here it’s about 99.9% chinese so they are not used to seeing people of different nationalities very often. They are just curious. However this doesn’t mean that they aren’t friendly. In fact, Mike and I agree that this is the friendliest country we’ve ever been too. People will definately go out of their way to help you in any way they can.
We always hear how beautiful Drew is by people on the unit and by people we meet out and about. Everyone wants to shake his hand and poke his fat belly. They also love to poke their fingers in his cowlick. In China, the cowlick in the center of his head means he will have two wifes!
It’s so nice to sit back and enjoy all of the compliments Drew receives. In fact, it’s the best we’ve felt in a long time.
Mike & Kristin
July 31st, 2008
The three of us had an excellent full night of sleep last night. Drew fell asleep at 2030 and mama/dada got to enjoy “Roadhouse” on our laptop. Wouldn’t you know he only cried out once at 2200 but Mike has figured him out. Drew likes the room to be at a particular temperature and he prefers his pantalones and socks on while lounging in his crib.
Today was another good day with phyical therapy and in the stander. Kerri taught me a new way to stretch his hands and he was able to open/close his right hand on command a bunch of times. It’s pretty much several minutes of vigorous hand stretching. Not only does Drew enjoy it but Mike demands the same therapy as well!
Drew also was in his sitting position with minimal assistance again today. It took a little bit more of an effort to get him into the position but he stayed after awhile.
Yesterday, while Drew was in his stander for the second time he had all of the physical therapists singing his Dora songs to him while they were playing on the laptop. It was the cutest thing ever.
Tomorrow will be his first lumbar puncture. If Drew doesn’t stay still then he will be taken to the OR (operating room) on the third floor and be put under general anesthesia. Dr. Tony says he has a few tricks to try out and that he’s pretty confident he can handle Drew. My guess would be drugs because we’ve tried just about everything else to calm down the little rat!!!
We also taught the team a new word “cowlick.” Can you guess why they wanted to know this word???
Wish us luck tomorrow
Mike & Kristin
July 31st, 2008
Today was a good day but as usual Drew is a wild man at night. Today he did well during PT and sat for at least 3 minutes with minimal assistance on his own. Kerri only helped by keeping his right hand firmly on the mat and helped a little bit with his upper body balance. Drew definitely did 90% of the work. At home I could get him in the same position for about 15 seconds with minimal assistance on a really good day. I’m not sure if he just has really good tone today, if it’s all of the physical therapy, or if it was the stem cells he had on Monday. Drew’s abilities has always varied from day to day.
Yesterday we did 2 rounds of stander time to see if it would tire out Rambo. Well our little terminator woke up at 1am thundering away in his crib. Then he woke up again, and again, and again. I think before the doctors leave we’ll beg for Valium again. It’s worked twice so far but we’ve been here for 10 days and we’re exhausted.
During rounds today Dr. Tony, Drew’s attending Dr., told us it was important that Drew does not get sick before his lumbar puncture on Friday. It’s been raining outside so we’ve been keeping him in which means only one of us can go to RT mart. Mike went the first time and I went today, alone. Mike told me he got a few stares but not as much as usual. I also received looks (I’m a pale giant here!) but not as many as when we’re out with Drew. With Drew it’s always an adventure around here. It’s still kind of intimidating when you’re out in big crowds. I’m always thinking: Do I have boogers sticking out? Did mike stick a sign on my back that says “Stupid American”? Is my fly open? Do I have Drew barf on my clothes still? Did I forget my deodorant today?
July 30th, 2008
On Monday Drew had his first stem cell treatment via an IV infusion. It took about 30 minutes and he behaved himself for the most part. He screamed like a banshe when they placed the IV but afterwards he enjoyed “Dora the Explorer” on our laptop. He also had a couple of the nurses practice their English by reading him some of his books. The whole procedure took place in the IV infusion room with huge comfy chairs that Mike hogged most of the time.
They started out with a saline solution and then gave him dexamethasone, a steriod, which is standard procedure here, to prevent an allergic reaction. Afterwards he went into a “roid rage” according to Mike. In other words he was really really hyper. He was giggling like a maniac and doing the texas two step all over the floor. I had to take him around the unit 20 times because he had about a million ants in his pants. He provided last night’s entertainment for everyone.
At night time he didn’t sleep the best but he hasn’t sleep well at all since we arrived on the 21st. He always wakes up at 1am and usually takes a drink in his sippy cup. It’s like he’s 6 months old again! Mike calls him the 1 AM express. I haven’t had to feed him in the middle of the night in ages. Then after the drink he usually talks to himself and screams insults at us for a couple hours. He might fall asleep for an hour, wake up for a half in hour, etc. Usually when he wakes up at home, he quiets down instantly when we hold him but here it doesn’t matter if he’s by himself in the crib or in our bed with us.
This morning, Tuesday, we had PT and standing time. He was a lot looser during stretching and tolerated standing time with no problem. The air conditioning is fantastic today b/c it’s colder than normal outside. Maybe 85 F. It’s the first really rainy day we’ve had. What i’m trying to say is Drew wasn’t sweating like a maniac during his exercises.
We asked the physical therapist if Drew could do another round of standing today to get him tired out. I think he has some extra energy because at home he was in his walker for several hours every day. There is one walker here but it doesn’t have the right kind of support that Drew needs. He needs a lot of upper body support.
We also learned today that is better if Drew gets plenty of sleep, so we will be trying every trick up our sleeve to get the child to sleep! It would be nice if we could sleep to and also the doctor on call probably would appreciate it too!
Mike & Kristin
July 29th, 2008
For those who may just be starting to read out blog be sure to check out the dedicated picture site I’ve created!
http://picasaweb.google.com/mdricci
July 28th, 2008
Within the first few hours of getting into China the weirdest thing I noticed was that tons of people drive Buicks (http://www.buick.com.cn). GL8s and Regals seem to be the most popular. Its amazing how cheap stuff is here too – most bottled drinks are 3 RMB (~$.40). I haven’t drank the water yet and it feels & smells really funny. In downtown Hangzhou I’ve only seen 3 caucasians. We’re also pretty lucky that English is the only other posted language.
July 27th, 2008
Tomorrow is Drew’s first stem cell treatment and we’re beyond excited. The schedule includes doctor rounds at 9 AM, PT from 9:30 AM to 10:30 AM and then he’s in the stander from 10:30 am to 11:00 if he tolerates it. His first treatment is via IV and takes place sometime in the afternoon between 2:00 and 4:30 PM. They will let us know tomorrow morning on the exact time. The second treatment is via a spinal injection this coming Friday.
We’ve also met other families and kids on the unit that’ve been admitted this past week. One is a 2-year-old cutie with CP from california and a handsome 18-month-old boy with CP from England. I’m pretty sure they both start their first treatment tomorrow as well.
Today Drew had the day off from physical therapy, so we went shopping in Hangzhou. The unit hired a driver for us and we stopped at an area of indoor markets called “the four seasons.” It was definately an experience in itself; I really don’t know what to compare it to in the US. There were hundreds of tiny shops with mostly women’s and men’s clothes. All of the prices there were negotiable, most women’s shirts were 30 RMB ($4 USD) and shorts were 70 RMB ($10 USD). Clerks had calculators so I just typed in a number to barter with them.
This facility really caters to foreigners and we feel very comfortable here. There’s always at least one interpreter around if not several and most of the staff understands some English as many learned it in high school/college. There is a book of menus in English for local take-out places for lunch and dinner. All we have to do to order is tell the interpreter our selection and they call it in for you. Most meals for two can be had for 15-40 RMB ($2-5 USD). Getting around is east too as there’s at least 3 drivers we see all the time that can take you anywhere. I think they charge the equivalent of $45 USD for 4 to 6 hours of service. The driver we had today even came inside with us and helped us barter. She pushed Drew’s stroller and carried Drew around.
In all the rooms there’s a list of local places of interest to visit in your free time. All of the patients have two days off per week, so there’s some down time.
I’m not sure if this information is redundant but it’s nice for people who are considering traveling here for treatment to have an idea of what it’s like.
I forgot to mention what the favorite part of our day was. After our shopping trip we went to Hooters! Drew enjoyed some American rap with all of the verses unedited. If they only knew what they were listening to, we sure got a kick out of it! They also did the Macarena for Drew but Mike wouldn’t let me take a picture. I was laughing so hard I was crying. We also had the best food. Mike had the most unique buffalo chicken sandwish ever and I had amazing french toast. Drew of course drew crowds gobbling down his ice cream.
Well I guess that was our day. We can’t wait for tomorrow!
Kristin, Mike and Drew
July 27th, 2008
Hello again,
We found out yesterday that Drew’s first stem cell treatment is Monday and will be via IV. They do it this way the first time in case Drew has a reaction so they can discontinue the infusion immediately whereas with a spinal they would not be able to. Drew’s attending doctor, Dr. Tony, seems to think that stem cells via a spinal would serve Drew best. We will have to see how the first spinal goes and if Drew tolerates it well than he can have several more spinals. Drew is receiving 6 treatments during this visit.
His blood was drawn this morning so that they can type and screen the stem cell batches. The supplies they used to do so were very similar to the US. They had the blue top/red top tubes, butterfly needles, alcohol swabs, gauze etc. It was slightly different though but easy to figure it out. The needles don’t have safety features that I saw and I haven’t seen a sharps container yet. They might have the sharps containers on different floors b/c there really isn’t a lot of needle use here other than blood draws and the stem cell transfusions.
Drew had a PT eval with Karrie yesterday and his first session today. Most of the session was a lot of stretching because Drew has been really tight lately. Then she worked on rolling on the mat, sitting up, lots of “head up Drew,” etc. It was pretty similar to what Drew is doing through early intervention with his physical therapist, Michelle, at home.
After the one hour session of PT, he spent about 20 minutes in a stander. Eventually we hope to make it to 30 minutes but Drew was a little bit too fussy today. The standers here are supine standers vs. prone and I was surpised that Drew stood up like a big boy without arching. Yeah Drew!
He will receive 1 hour of PT 5 days a week and 30 minutes of stander time for 30 minutes 5 days a week. He also receives electrical stimulation for 40 minutes 5 days a week. We haven’t done the last one yet but i’ve seen other people receiving it and they all seem pretty relaxed.
Tomorrow is Drew’s day off for PT, stander time, and electrical stim. Which means we can spend the day birthday shopping for Kristin at RT mart!!
Kristin, Mike & Drew
July 24th, 2008
Ni Hao,
There is so much to tell everyone about our experiences so far, it would be impossible to fit it into this blog…
Yesterday we arrived at the hospital and it’s pretty amazing. The hospital lobby is huge with a gigantic front desk and signs everywhere. It’s very different from the US, I’m sure we could sit down there for hours and just watch the commotion. By the way, Drew loves it when people speak Chinese. He listens intently and giggles with certain words. It’s pretty cute.
We are about 30 minutes outside of the city of Hangzhou but it’s still pretty hopping. There are still plenty of sky scrapers, apartments everywhere, stores galore, etc. There’s also a huge mountain in the background.
The stem cell treatment center/unit is on the 20th floor, so we get the best views around. Our room is huge, bigger than a double occupancy in the US. We have a double bed and a large crib for sleeping. We also have a full bathroom with one of those trendy bowl sinks that sit on top of the counter. There is also approx. a 27″ TV in our room with a DVD player that Drew watches his cartoons on.
There is also a mini table with two chairs that we eat our meals on. We have been ordering out chinese for lunch and dinner everyday. There’s a huge book of take out menus that we can choose from. I think I saw Pizza Hut and McDonald’s in the back but we’re looking the Chinese food here. Rebecca comes around and takes our selections and calls for us. Depending on what we order it’s about $1-2 USD for 2 meals. I swear i’m not joking!
There is also an RT mart around the corner which is HUGE. Mike and I could spend a whole day in there just looking around. It is bigger than wal-mart with multiple levels. One the 1st floor there are lots of vendors, on the 2nd is food, and on the 3rd is everything you could ever want.
As far as food goes, we easily found food that Drew likes and that we like. The prices are fantastic, but some of the products are the same prices as upstate New York.
The unit has several patient rooms (all private rooms) with all of the patient’s name and place of origin on the door. There’s a few Americans and Canadians…lots of Romanians. A little bit of every nationality. Currently, there is one other child next door to us in room 1 (we are in room 2). He’s 8-years-old and cute as a button.
The unit has a couple different physical therapy rooms with different equipment like a mini staircase/ramps in the main corridor. There is a huge nurses’ station and a special room that says “Stem Cell Treatment Room” on the double doors but you can’t see into it. There are a couple fully equiped kitchens with tons of different condiments and bags of rice in them.
There is also a lounge room with a play area and a little living room surrounding a couple computers and a bigscreen tv. Drew enjoyed playing with the toys but of course he loves a few favorites that we brought from home. He is a high maintenance boy!
I forgot to add that our room has one of those portable water tanks that you see in offices as the tap water is not potable. The water is fresh and it definately makes life easier considering we don’t have to buy hundreds of water bottles. There is also a mini fridge right in our room for all of Drew’s special drinks and Mike’s orange juice. If we bought anything frozen we could put it in the freezer in one of the kitchens but I don’t think it would make it all the way up to our room as it is hot hot hot outside.
I hope this gives you somewhat of a picture of what it looks like here.
Kristin
July 24th, 2008
Space available for pictures is pretty scant on this webpage so I’ve created a Picasa gallery to augment our blog. Our first pictures are here. The portal for this and other photo galleries can be found at the following URL:
http://picasaweb.google.com/mdricci
July 22nd, 2008
We have arrived! Our adventure started Sunday the 20th by arriving at the Rochester, NY airport at 4am. We hopped on our flight at 6am and gave drew some benedryl. Our flight to Atlanta was only 1 hour and 50 minutes and Drew was a little angel. He slept the whole time! Next we got on our flight to Shanghai at 10am. We were able to track our entire flight via the little tv’s in front of everyone’s seats. Drew behaved rather well! We had a couple rounds of messy diaper changes but we survived! We were served several rounds of snacks and 3 meals. There were a ton of movies/shows to choose from to watch. I definately recommend flying Delta for international travel. Mike and I agreed it was the best flight we’ve ever had. The one strange thing was that it was never dark because we were flying west the whole time. In fact it was so bright, everyone had their shades drawn so it was dark in the cabin the entire time.
This flight was 16 hours and we arrived in Shanghai at 3pm on the 21st (monday). We went through customs without a problem and immediately saw our beBeike contact, Lucy. She showed us to the van. It was nice and roomy with a wheelchair lift in the back. There was a lot of room in it and had no problem carrying our eight bags.
The ride was 3 hours and it went okay. Drew complained for some of it but we got him to calm down. We arrived at our hotel, the Grand Metro Park Hotel, located near the beautiful West Lake. We finally got to lay down at 6pm on the 21st (monday). It was quite a journey!!!!
Lucy helped us get settled at our hotel and translated for us. She speaks excellent english! She is a patient coordinator for the hospital we will be staying at starting tomorrow. She answered all of our questions and gave us her phone number in case we have any further questions. She is going to give us a call tomorrow morning (Wednesday the 23rd) to discuss pick up times–we’re about 30 minutes from the hospital. Today (Tuesday) we are going to relax and do some sight-seeing.
Thanks for all of your encouraging posts!
Sincerely,
Kristin, Mike & Drew
July 22nd, 2008
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