I’fve just posted our last batch of pictures online from our trip to China. They can be found here. Drew has also had meeting with his speech, OT and physical therapists who were on his case prior to him going to China, all of which have noticed slight impovements thusfar with head control and decreased tone being the most common response. I will hold off on posting specifics for right now as Drew has really been under the weather with allergies and isn’t being cooperative much lately.
-Mike
August 30th, 2008
Well its been four days since we arrived home and we’re mostly glad to be back here. I say mostly because we’re having a hard time adjusting to the local time and its ragweed season therefore all of us are suffering from allergies – really bad. Drew hasn’t been too great from it and is hot/always congested. We gave him children’s claritin but it hasn’t really done much to take the edge off.
We finally got an outside opinion on the progress Drew has made thusfar from family members and his speech therapist over the past few days. Drew is a lot more relaxed in both tone and his fingers and continues to make all the sounds that he learned while in China. His other therapists will be visiting later this week after not having seen him for five weeks.
Drew continues to show small improvements especially with being able to sit down for an extended period of time. Once we prop him up he can sit on the couch unsupported for about 4-5 minutes before he toppes over to one side. Before the treatments it was about 20-40 seconds before he would do this. As always, we will be looking out for more improvements over the next 3 to 6 months.
I also posted the last of the pictures I took while in China a few days ago. You can reach them here:
http://picasaweb.google.com/mdricci
Mike
August 28th, 2008
We finally made it home around 2 AM (GMT -05:00 EST) today (Monday morning) after leaving the hospital on Sunday morning around 10 to go to Shanghai Pudong airport (PVG). Leaving the hospital wasn’t as bad/emotional as we thought it was going but honestly it didn’t really catch up with us until we got to the USA. Drew got kisses from both his girlfriends Elanor and Andrea. Andrea was still in bed when we came in and Drew figured he could hop in and hold hands with her. When they finally said goodbye Andrea was crying that she didn’t want Drew to leave! When we got downstairs the other drivers that carried us unscathed through traffic were there to see us off and we got in the van around 10 AM. The drive to Shanghai was uneventful except that Kristin couldn’t get over how the public toilets are different than what we’re used to while at a rest stop. I think Rebecca took 2 minutes explaining to the driver that Kristin was taking pictures of the toilets.
Upon arriving at the airport Rebecca helped us check in with our mountain of luggage and gave us some going away tattos in Chinese for good luck – wu di (strong and powerful), mei neu (beautiful woman) and ben dan (this person is an idiot). Well the guy that got ben dan had his wallet fall out in the company van and luckily Rebecca was around to save the day.
Anyways, the airport is an amazing piece of architecture and the entire terminal area is enormous and quiet as a musem. Everybody was helpful and most spoke some or very good English. Check in was a breeze and security was pretty much the same thing as in the USA. The flight was long but Drew, the onboard movies and food were good and we arrived 45 minutes early. I was worried a bit about US customs going through our bags and confiscating Kristin’s counterfiet purses but when we got there the CBP guy spent about .25 seconds per passenger collecting their forms and waving them through like a meat processing plant.
Upon arriving in the main International concourse in Atlanta and seeing tons of other Americans and fast food/burger joints in all their glory is about when it hit the both of us that we weren’t in China any more and how much we really miss (in no particular order) the interpreters, doctors, nurses, cleaning people, drivers other patients and their families. Drew still got all the attention but it wasn’t nearly as what it was in China. We had a 3 hour layover that was extended to 4 but it was over before we knew it and we were in Rochester. After a quick drive home we walked into our house without Drew (he’s keeping Grandma awake right now) and it felt really eerie after having spent 5 weeks with three people in a ~30′ x ~20′ room.
Anyways there’s lots of typical stuff to do around here after having been gone for awhile and I’m still on China time including not enjoying 95 degree heat with 85-90% humidity. Kristin’s Mom hasn’t really gotten a chance to play with Drew yet but we will let everyone know what its like before and after from someone else’s persective.
-Mike
August 25th, 2008
With one day left and 34 or so behind me in I thought I’d post some information about what I’ve learned here for those that are interested in going to China.
There are many differences between the Western and Chinese cultures, the biggest of which have to be related to cuisine and eating. The biggest difference between American Chinese and traditional Chinese food is the amount of oil utilized in cooking and lack of thick sauces loaded with sugar. Our cocktail table in our room also cameos as a dining table and desk and I have to wipe the grease off after every meal. For some reason though the oil that’s utilized doesn’t make me want to vomit like everytime I eat McDonald’s. There are a lot more vegetables, soups/broths, ginger and garlic utilized as well.
Eating out at a traditional Chinese restaurant is also very different than a Western restaurant where every person orders their own meal and rarely (if ever) shares with the larger group. When dining with a large group its (as I’ve found) very common to order multiple dishes that are shared amongst everybody. Table settings consist of a small plate, small bowl, chopsticks, a glass to shuttle beer (later Greg) and usually a small rest to keep the business end of your chopsticks off the table. Larger tables will also include a huge wheel to spin dishes around on and share with everyone. Most of the time you will just pick out what you want directly from the serving plate, eat it and repeat without transferring to your dish with the exception of something really messy (i.e. a ton of noodles or long vegetables).
At one point or another I read about the concept of wholeness in Chinese cuisine and its not uncommon to find almost every part of an animal utilized and/or present while eating. For example if you order fish, you get pretty much a whole fish sans internal organs. The meat here is OK but at most of the places I’ve been to thusfar takes a bit of effort and working at something to get the good stuff separated from the bones/etc is common. Soups are really good and have a ton of flavor. Even though a lot of it is cooked with oil vegetables are in everything and are a part of every meal.
In traditional places menus didn’t seem like that big a deal – the food they could whip up was out there or there was at least a picture of it. Most seafood such as fish and shrimp are extremely fresh as its usually killed, cleaned and cooked all in the same place. Other than the aforementioned fish, eating shrimp was another thing I had to learn over again in China. As shrimp is fresh, they are usually thrown in whole and boiled/cooked then served (head on, shell on). Separating the head is easy but taking the shell/legs/etc off is something I forgot to do.
Drinking in China is also very different. In a restaurant setting you don’t drink beer from the bottle. This is where the (4~5 oz. or so) glass comes in. Everyone at the table will fill their glass and say cheers every so often, sipping out of the glass. As the night goes on sipping the glass usually turns to finishing it and saying cheers goes to speed chugging the guy(s)/girl(s) across from you. Being a Westerner usually makes you a target. Luckily beer is more filling here than potent at an average of 2.8% ABV.
Dessert isn’t really a big thing here either but the closest thing to it is somewhat healthy. After a large meal its (from what I saw) common to have cutup watermelon (seedless, pretty much like back in the US).
Really different, but really good.
August 22nd, 2008
On Thursday we went swimming in Hangzhou with Drew. Sophie, a nurse here, invited us along with Rebecca (interpretor) and James (brother of a patient here from Tasmania). Drew had a fantastic time. We were swimming for nearly 2 hours and Drew wanted more.
Drew has pool therapy back home at the CP of Rochester where the pool is heated to 90 degrees. It is warm enough to keep him loose for a day or two and of course he loves swimming with other children. Mike and I noticed that Drew was kicking a lot more than usual. Also, Drew was splashing with his arms which he never did before.
It was fun for Mike and myself as well. Of the 9 years we’ve known each other we’ve never raced each other swimming. Of course I won so I have to brag about it a little on here.
The doctors just came in and Dr. Mike is familiar with Syracuse, N.Y. He has visited there before and loved the leaves in the fall. Anyways, the team is very hopeful for Drew. He said that he is hoping that soon Drew will be near normal! He was totally serious!!! He recommended returning in 6 months to 1 year. I still cannot get over what Dr. Mike said. Wow. Whenever my Mike and I think of this we think there would have a greater chance of winning the billion dollar lottery. We also think that their would be a greater chance of Donald Trump being dropped naked from a helicopter in our front yard! Anyways, I definately like and prefer Dr. Mike’s train of thought.
Mike & Kristin
August 22nd, 2008
Last night went well. Drew slept but was really tight so I requested another round of Phenergan. It did the trick and he is still loose today. Right now he is snoring away taking his nap puffing away on his “cigar.”
The rest of this week is physical therapy, stander time, and electrical wave therapy. We have friday off so we will get our last licks in around town.
We miss everyone back home and we already miss everyone here too.
Mr. & Mrs. Kristin Ricci!!!
August 19th, 2008
On Monday Drew had his final stem cell treatment via a lumbar puncture. He of course put up a huge fight when the nurses went to start the IV. It took 5 of us holding him down and wouldn’t you know it he still moved his arm!! The nurses and doctors here are really wonderful to deal with our highly willful child.
He was in the room where they do the procedures longer than usual and just like last time, when the staff wheeled him out it looked like Drew gave everyone a workout. They told us that as soon as he was wheeled in he recognized what was happening and immediately let loose his outrage. They had to give him a second round of valium through his IV right away.
Dr. Mike came in our room afterwards and explained how strong Drew is. He calmed a little with the second round of valium but still intentionally wiggled as much as possible. Dr. Mike feels that Drew is incredibly clever and will remember this. He feels that the next time Drew will have to be taken to the OR (operating room) on the third floor for all future lumbar punctures. This means he will have to be put under general anesthesia. They don’t have the equipment or an anesthesiologist on this floor. Dr. Mike feels that his strength has greatly increased since the first treatment and Drew is just to strong to do it while he is awake. Judging how crazy it is to hold Drew down for his IV, I can’t imagine how hard it is to hold him still for a spinal tap. Dr. Mike also noticed that with the first lumbar puncture he went in laughing from the Valium. Then with the second lumbar puncture he went in with a poker face. Dr. Mike feels it just went down from there. Everyone here feels that Drew is very intelligent which is why I call him my little terminator.
Right now Drew is lounging in his crib watching his tv shows. If anyone is considering stem cell treatment don’t be alarmed by Drew’s behavior. We’ve seen several children now go through it with no problems. All of the kids fall asleep with the valium and remain asleep for a least a little while after. I haven’t seen anyone go to the third floor yet for a lumbar puncture.
Mike & Kristin
August 19th, 2008
I’ve put up more pictures again, be sure to check them out! Man I’m worse than Grandma Ricci right now.
http://picasaweb.google.com/mdricci
P.S. If you’re reading this Grandma we love you!
August 17th, 2008
Drew had his fifth stem cell treatment on Friday via IV. Everything went smoothly and he enjoyed all of the attention he received from the Nurses. His sleeping has fallen off the deep end again. He wakes up about seven times every night. He informed us that he cannot wait to go straight to grammy’s and pappy’s when we return home.
On Friday, I was able to get away from the hospital for a few hours and I went to some interesting places. We went to a Western bookstore and the section of books written in English was small. The prices were about the same if not more than in the U.S., about $15 per paperback.
After the bookstore we went to a toy store which in reality was an indoor market with many small children’s shops. We got a bunch of toys and books for the unit here. Mr. Lee, one of the drivers here, always amazes us with his bargaining skills. He is so good he usually gets the shopkeepers chuckling.
Indoor shops are very interesting as they’re very different from shopping malls/strip malls in the US. The building will have 3-4 floors and is air conditioned (thank god). The size of each floor is about 75 square yards if not smaller. Each floor is a maze of hallways that are no more than 4 feet wide and are very crowded. The size of individual stores varies with most having 6-10 feet of frontage and 7 to 20 feet in depth. If business is slow people are either passed out in a lounge chair or chatting with someone across the aisle. Many times shopkeepers are eating lunch or playing cards together until they spot someone going in their store. Nothing has prices on them in these types of shops and everything is negotiable. They will typically throw a price out for something and they can usually be worked down 50%. Most things here don’t cost more than 60-70 RMB ($10 USD).
The last stop of the day for Kristin was Wushan square which is a very traditional Chinese outdoor market. I’d have to say it is the most unique place I’ve ever been. I took some pictures for everyone to see.
On Saturday, we went shopping with Rebecca around the downtown Xiao Shan district which is right around the corner from the hospital. Drew did very well with no complaints. He put on a show like always and drew in the crowds. He continues to have better head control than before starting the stem cell treatment. It is still not perfect but several people here have noticed a difference. It’s always great to hear these things from other people. Maybe we could compare it to your kid getting an A on a spelling test? We’ve also noticed that no matter what kind of mood he’s in, he is talking more so than a month ago.
On Sunday, this morning, we went on a 20 minute hike to get some coffee! We practically attacked the first coffee house we saw. We both got iced mocha’s and they were so good as it is really humid out. Drew got ice cream and was a sloppy boy as always. The people that worked there just stood behind us and watched. They actually picked Drew up and carried him around the cafe and Drew didn’t cry or make a sound once which is amazing considering he would have a continual meltdown with any new babysitter until we would show up. Mike and I actually got a few minutes to ourselves. Then Drew of course let out a 2-minute long fart then an explosion practically knocked us over at the table. It’s amazing how so many people love holding Drew. Strangers always come over when we’re out and about and they motion if they can hold him. It’s totally not weird at all. Its funny how back home our dog Stewie gets more attention than Drew. Also, Drew never whines or complains when people carry him around. It’s like he has accepted the fact that everyone wants to hold him and pay attention to him. He probably has an ego bigger than Paris Hilton right about now. Every time he sees some random person or a person we know hold up their cell phone or a camera, he turns and smiles! He’s ready for the paps.
Mike and I always joke with people here about the time we were out walking with Drew and our dog. This person came running up to us all out of breath and asked “how old is he?” Mike started bragging about Drew and the guy cut him off mid-sentence and said “No, I meant the dog!” Then the guy asked us all of these questions and we slowly had to back away from him. If Stewie was here, I’m sure he would be quite jealous of Drew’s celebrity status.
Mike & Kristin
August 17th, 2008
We received Drew’s album and it is really cute. There is a lot chinese writing within so we will have to get it translated before we leave.
Drew has slept 4 days in a row for 11 hours straight each time. He also started up his 2 hour naps like he was doing at home. We don’t know what to do with ourselves with all of this sleeping! Drew is doing much better with all the rest he is receiving. His tone is a lot more relaxed, more so than it was at home. I can put him in certain positions which I could never do before or at least not very often. One of my favorite ones is sitting him on the side of the bed with his legs dangling down the side. Sometimes I can even sit him on a flat surface with his legs straight out in front of him. We find ourselves using the Native American style of sitting a lot less. All of these positions are with assistance.
Drew also has a collection of sounds that he works on all the time. He has been saying “ma ma” about a dozen times a day for the past 6 days. It still takes a lot of work for him to say the “mmmm” sound but he can do it! He can say the following on command: da da, ba ba, ga ga, ssssss, eeeee, yeah, essss, jaaa, ed, ouuuu, and a few others. I have been trying to get him to say our names when he wants something instead of screaming bloody murder. He’s having nothing of it so far. Mike feels that he could say all of these things back home but after the first stem cell treatment he has been saying them more frequently.
Dr. Tony feels that Drew will show the greatest improvement during the 3-6 month time period. After 6 months, he feels Drew’s level of functioning will level off if that makes sense.
August 14th, 2008
We finally got the pictures from Drew’s and Kristin’s photo shoots! I’ve put the ones for Drew on our picture website - Kristin has to decide what she wants with her photos. We’re going to get his picture album at some point today and can’t wait to see how it looks. Photo albums in China (at least at this place) are really nice, more than anything I’d expect to get at a typical place in the US. I still have many more pictures to put up.
On another note we’ll be moving to our 3rd (and hopefully last room) today. The room we were supposed to be in for the whole time has a problem where cigarette smoke is entering the bathroom from somewhere and then gets into the A/C air intake, making the whole room reek. The staff here has been great with trying to fix the problem and has been able to move us to other vacant rooms on the 20th floor.
August 14th, 2008
Drew received his 4th stem cell treatment via lumbar puncture on Monday. He put up a huge ruckus with starting the IV. The past few IV insertions have been difficult as he is very strong. It usually takes a couple trys because he is one uncooperative little cookie. The lumbar puncture went well only the Valium didn’t make him as sedated as before. We are not allowed in the room with him but we could tell when he was wheeled out with the nurses that he gave everyone a hefty workout. He calmed down after we started reading him some of his books.
It was difficult keeping him calm during his 6 hours of bedrest. After 5 1/2 hours we gave up and wheeled him around the unit. He was still whining and cursing at us, so we asked for some sleeping meds at 8pm. They gave him phenergan through his IV and it worked like a charm! Drew slept for 11 hours and the night before he slept 10 hours! This morning he was so gooey (loose) for PT; he barely needed stretching. I’m guessing because he got two full nights of sleep in a row. We actually brought benedryl with us for the plane ride and we started using it this week. Without medication, I honestly feel that he won’t sleep more than 4 hours in a 24 hour period.
Dr. Tony feels that Drew’s temperment and lack of sleep is because of getting poked all the time. They feel when we return home Drew will be much more relaxed and we will start to see lots of improvements. Sometimes Mike and I just can’t believe how bad Drew can be here. I half expect Drew’s head to spin 360 degrees and to vomit green goo. He is however loving all of the attention and showing off his smarts. He loves it when there is a crowd of people and Mike goes through their names while Drew looks at them. He has the entire staff’s names memorized. Sometimes he trips Mike up!
Our next stem cell treatment is Friday and that is via IV. We also learned that is Beike doing a trial with utilizing the stem cells from the actual umbilical cord itself. Drew is receiving his stem cells right now from the actual umbilical cord blood. Also, just this spring they started using patients’ own bone marrow to harvest stem cells then injecting it back into them. The bone marrow is supposed to have either 500 million or 1 billion stem cells (I forgot the exact number). With each of Drew’s treatments he receives 10-15 million. We also found out that people with cerebral palsy do not benefit from bone marrow treatment. They don’t show much improvement, so there isn’t a point to obtain the stem cells from this source. People with other disabilities/disorders have shown improvement however. They take about 300 ml of bone marrow, which is probably a lot for a two-year-old even if he is a large fellow.
Anyways, if people show improvements from the umbilical cord itself then they might start using this source of stem cells in the late fall. Can you believe how fast things move along here? Imagine what they’ll be able to offer people in a couple years. All of this information I’ve heard from other patients that have talked with the doctors here. If anyone has specific questions I would contact Beike itself for more detailed/accurate answers.
My hope for the near future would be that as soon as someone or any infant suffers brain injury, stem cells would immediately be transfused.
Drew says hello to everyone back home and wants everyone to know that he made really stinky poo this morning.
Mike, Kristin, & Drew
August 12th, 2008
Last night at 8pm there was a large get together on our unit to watch the Olympics opening. I even spotted some fireworks outside. It was a ton of fun and we took lots of pictures for everyone to see. Drew behaved himself but did fill his pants a couple times. Right before the party Drew had to try the grapes I was practically inhaling. The grapes here are about two times the size of grapes back home, so you have peel off the skin or else it would be a mouth full. The little stinker ate 20 of them and it was really exciting b/c he never ever liked that type of texture. Of course I paid for it 20 minutes later.
The fruit here is amazing. There are so many different types and tastes. I love them all. The cantaloupe here is fantastic. It is much bigger and has an oval shape. It also has a very crispy texture, crisper than a granny smith apple. I ate something last night that was so exotic looking that I’ll probably never see it again but it tasted sooo good. I can’t even describe how it tasted, there’s nothing to compare it too.
Drew is doing okay, a little less cranky but still quite demanding. Sometimes I see improvements like I mentioned in earlier blogs then other times we don’t see anything. One thing that we’ve always known is when Drew is upset or uncomfortable his tone is beyond tight. I think that when we are home and he is back into his routine is when we will start to see more consistent improvements.
We now have the schedule for next week and he does have a lumbar stem cells treatment on Monday and an IV treatment on Friday. The doctors will round next on Monday and we will see what they think about the lumbar puncture. The first Lumbar puncture we didn’t notice any pain with Drew but with the second one we noticed he was uncomfortable. In fact he’s still pretty tight. He has wised up when it comes to IV placement time. All Drew has to see is a tourniquet lying on a counter and he flips out. Drew requires at least 2 to 3 nurses and the two of us to hold him steady. They do all the kids right in a row on the same day, so we usually hear one of the kids rippin’ and roarin’ while the nurses place the IV. This gives us a few minutes to get locked and loaded, so that Mike can put Drew in the full nelson position when it is Drew’s turn.
Tomorrow is Drew’s day off. We’ll probably take a walk around outside. There are a couple of little parks right next to the hospital that back up to the canals. When you walk through them, you get a chance to experience the extreme difference in vegetation here. It is really quite beautiful. We only go when there are not too many people walking through the parks because the bugs are gigantic here. Usually I put on a big production of screaming and dodging out of the way of whatever they are. Of course a crowds ensues to watch the large western girl yelling and doing some sort of awkward polka dance around the stroller. Of course Mike has to do a crazy leap out of the way of the swinging arms and legs which gets Drew laughing like a mad scientist.
We promise to post another blog soon!
Mike & Kristin
August 9th, 2008
Drew slept for a whole 3 hours last night and I finally gave up around 5 AM and got up to go through pictures. I have a lot to upload!
http://picasaweb.google.com/mdricci
August 7th, 2008
Good news–Drew did not have a temperature this afternoon. You’ll have to read the previous posting to understand why we were nervous about his temp. He had another lumbar puncture today and only 3 more treatments to go. The new schedule does not come out until Friday. Mike was thinking that they might schedule him for Monday, Friday and then the following Wednesday.
Drew did well during physical therapy today. The last 5 or 10 minutes of each 60 minute session Kerri has Drew practice rolling over. He rolled the quickest yet with a little less assistance than usual. She always works on head control exercises too and we’ve noticed an improvement. We will definately continue to practice these exercises until he doesn’t need it anymore.
We noticed something cute today during Drew’s bedrest. During his Dora show, the show encourages him to make an “sss” sound like a snake. Then a little snake pops out. Drew immediately starts making the sound but of course only when Dora says “can you make an sssss sound?”. He smiles about 30 seconds before because he knows that scene is coming up and he can participate.
They took him in early for the procedure at 2:30 and he was done at 3pm. Last time they said we can get him up after 4 hours but all the literature says after 6 hours. It also says the longer he stays flat the better. It’s also better that he sleeps. I think tonight we’ll see if Drew can last 6 hours and we’ll only keep him upright for 15 minutes. So at 9pm we’ll give him a little break, then hopefully go to bed. When you are sleeping there is a higher concentration of a particular hormone that stimulates the repair in his brain that we definately want. Hopefully, Drew will sleep good tonight.
We had a talk with Dr. Tony and he thinks that Drew’s improvements will happen over a longer period of time. He’s pretty confident that Drew will improve. He asked a bunch of questions as far as changes in Drew and we pretty much answered no to all of them. Things like is Drew saying any words, is he rolling on his own, etc. Dr. Tony didn’t seem discouraged at all. We just got to the halfway point of his stem cell injections, so Drew has plenty of time.
Hopefully we will receive our family album tomorrow. The photographer promised to put all of the pictures on CD, so Mike will be able to put them on the photo website. Tomorrow actually is an exciting day for me. When we were having our pictures taken another photographer requested to take pictures of me. He showed us his work and we’re all pretty impressed. My hair and makeup will be done and he will provide the clothes. Rebecca translated for me that all I have are jeans and barf stained clothes! Hopefully the clothes will be long enough because i’m about a foot taller than most women here. The pictures are going to be taken around the city and will last all afternoon. Mike told me it will be my Kristin time away from the hospital. Mike also told me that if any other photographers want to take a picture of our family, we have to start charging!! What can I say the Chinese like American babies with cowlicks, Wentworth Miller, and tall pasty chicks.
Kristin & Mike
August 6th, 2008
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