Hello! Thankfully Brayden woke up in a pretty good mood this morning, so we are hoping that means no headache! His back was bothering him though, so we decided to skip out on PT. Jason the therapist let him do accupuncture and electrowave therapy early, so we had the rest of the day free. Jason said he had to hold Brayden still during accupuncture bc he was laughing so hard. All wound up on stem cells Jason says!
Today is May Day, and the Chinese have a 3 day celebration! The morning was full of lots of loud bangs and honking horns, so we knew there were a lot of people celebrating. When we first got here, we heard lots of firecrackers, sometimes at all hours of the night. A little frightening at first bc the echo makes them sound more like gunshots. We have since learned that they use fireworks to celebrate EVERYTHING- opening a business, moving to a new place, etc. Today, we heard an unusually loud round of them going off very close to the hospital. We ran to the window to check it out, and they were setting them off right in the middle of the park that is next door to us. I mean the big ones! There were people just walking around very close to them like it was no big deal. Huge flames coming out of the tubes, and people didn’t even flinch! I guess they are used to it. They certainly don’t clear the launching area like we do back home!!
After a quick bite, we decide to venture to the Jiajia Yuan Market. We were told that they had Nike, Adidas, Puma, and a few other stores. Unfortunately, the prices for all their things were as high as at home. The only American thing left to do was have another icecream at KFC. While at KFC, I had my first opportunity to use a squat. Let me tell you, that was very interesting! It is one thing to step in your own potty when you gotta go in the woods, but it is another to step in someone elses splashies! I took a picture so I can share it with all of you! On our way out of KFC, we spotted a huge building with Coach, Columbia, Dolce and Gabana, Nike, and tons of other signs on the building. We were sure we had hit the jackpot. We walk into the first floor, and there were like 10 little stores, none of which were on the signs outside. We tried our luck with the 2nd, 3rd, and 4th floors, which were the only ones even open. At each floor there was maybe 3 or 4 stores, again, none of them Coach, Nike, or Adidas! I am assuming all of the open spaces will be full of those stores at some point- after we leave!!! We hauled our hineys the 5-7 blocks (country miles) back to the hospital with a shirt and pair of flip-flops. Not really the jackpot we had hoped for, but still a fun outing.
We stopped in for a quick visit with Giovanni and Elvia- the AustItalians- when we got back. They always have great adventures to tell us about. While in there, one of the nurses came in to see Brylie, who was standing at my feet. This lovely little nurse looks up at my belly, pokes me like the Pillsbury Doughboy, and says “Oh my!” I said, “I know, I’m a little on the chubby side!” She replies, “YES, YES!” Boy did that make me feel great. I made my husband and kids walk what seemed like 10 miles instead of getting a cab only to be called chubby when we returned!!! Gotta love the honesty I guess!
We are sitting down for another meal of microwavable Hamburger Helper, so I better get. Hope you all have a fantastic Thursday!
May 1st, 2008
I am so pleased to report that this spinal went down with no problems! The same little nurse, Nini, started his IV in the room with both of us here. I don’t even think Brayden felt it! She is AWESOME!! As a matter of fact he had a smile on his face the whole time. Maybe the awful sound of me singing “Honkey Tonk Ba Donka Donk” outweighed the pain of the IV! Brylie, however, did not like Brayden getting an IV one bit. She was scared and started crying a little bit when the nurse started working on him. Kind of sad, really. We then carried him to the OR, where we were met by that wonderful man that I so dearly love…ARGH!!! The very kind anesthesiologist came right in and gave him the meds to make him tired, and away he went. I didn’t even cry this time! I think Jason was proud of me, and the OR man was a little bored with us this time!! We did start to get a bit nervous bc it usually takes about 30 minutes from starting IV to bringing him back to us, and 40 minutes had passed and still no Braydo. We didn’t have a translator with us, so I knew it would do me no good to go in and ask OR man if he was okay! Finally about 5 or 10 minutes later, they brought him out. Dr. Ma said that he had a hard time finding an injection site. I’m not really sure what that meant, but I’m worried that they had to do a lot of poking around. Not sure what the risks are involved with that. I would like to know how the docs would know if he has any leakage of spinal fluid or any other problems since he can’t tell us if anything hurts. I’m not sure I even want to battle with trying to ask that question. Why in the heck they didn’t offer Chinese in high school, I will never know!!! We are now about 3 1/2 hours into our 6 hours of laying flat. He did a really good job waking up this time, so it has been quite a battle trying to keep his head down. I think we are going to talk to the dr. about some sleeping meds just to decrease the risk of headache in the morning.
Thank you all for your prayers! They are working wonders for us! We are more than half-way now, so it won’t be long! Everyone says the last two weeks go pretty fast, and I hope they are right!!
Could you all say a little prayer for Brylie- she is sooo bored! She has been such a great sister, and has done really well for not having any toys here to keep her busy. Bless her heart, she probably thinks she is stuck here forever!
Love and miss you all! Jason, Lorie, Brayden, and Brylie
April 30th, 2008
Hello! Today has been quite a boring day to be honest! Both of the kids are fighting allergies, so they were very grumpy to put it nicely!! You know you are raising a lot of cane around the place when the folks from 5 doors down stop you in the hall to tell you that it sounds like “your little dears” aren’t having a good day!! That is the understatement of the century!! We did get to visit with Dr. Ma earlier about our trip to the OR tomorrow. He is going to let a nurse from this floor start Brayden’s IV in our room. Then when we get down to the OR, they will start the anesthesia before they take him away from us. I am so thankful!! He told Jason that he thought we wanted him sedated for the IV, and that we didn’t want to be there for it. This is where the language barrier is so tough. Had we been able to communicate our feelings in a way that he could understand, we would have never had any of the issues from the start. I am confident that things will go well tomorrow. Please keep Brayden in your prayers. His injection is around 2:oo pm tomorrow.
Here is a little story, some of you may think I have lost my ever-lovin’ mind after you read it, but oh well. I don’t know if any of you have heard of or believe in “pennies from heaven,” but it is when you find a penny in an odd spot at a time when you are needing strength. In my case, I have been encountering dimes. Apparently, my guardian angel wants me to be rich!! Anyway, before this trip, I would find dimes in the strangest places- in a pack of gum, on a stud behind a wall we tore out in the bathroom.. just really odd places. My belief in dimes from heaven has been so strong on this trip. When we were gathering our belongings to board the plane in Chicago, we picked up Brylie’s blanket, and a dime was laying on the floor underneath it. Neither of us recalled it being there when we laid it down. Earlier this week, I took a pair of jeans out of my suitcase that I had not worn yet. In the pocket was a single dime. This morning I woke up, and as I got out of bed, a dime was on the sheets. I know you all think I am crazy, but Jason will testify to it! I mean to the dimes from Heaven part, not the fact that I am crazy!!! Well, okay, maybe both. I am sharing this with all of you because I believe that your prayers are making their way to the Man upstairs, and this is just a small way that our angel is letting us know that!
Please say an extra prayer for Brayden before you tuck in for the night. Spinal days are very difficult. Our love to all!!
April 29th, 2008
Today (Sunday) was the best day we have had since we arrived- by far!!! We arranged to rent a car for the day and go to the Underwater Aquarium and Museum, the Zhanshan Buddhist Temple, and the trestle that goes out into the Yellow Sea. We went with Aphea and Kayla, islanders from Tobago. We knew from the beginning that we would be getting a lot of stares just because of our races, not to mention the fact that we had handicapped children! At 9:30 sharp, two young men met us outside of our room and showed us down to the cars. They pulled right up on the front landing and opened the doors for us. What service! We knew it was going to be a great day!
After a very “interesting” venture through the heavy traffic, we arrived at Underwater World. As we bumped Brayden and Kayla down about 100 steps, we started drawing a crowd. Between the 3 kids, we were quite a site I guess. Some would just stare rudely, but some would come and rub Brayden and Kayla on the arm and face and give them a really gentle smile. Lots and lots pointed at Brylie. American baby girls are a big thing here. We finally got our tickets, and made our way to the entrance. I had to laugh bc there were like 2 very big tour bus loads of people waiting in line, but we got to bust right through and go through the wheelchair gate! However, once we got in, we had NO CLUE where the heck to go! Apparently is was very obvious bc a group of about 100 kids all started laughing hystarically at us as we tried to make sense of the signs. We finally just decided to follow them in. The place was awesome!!! Lots of crazy fish, turtles, and sea creatures. We were having such a great time, we even let it slide when the locals nearly knocked us over about a million times trying to get to the optimal picture taking place before we did. We learned that if you just wait it out, the crowd will clear for about 2 minutes. The best thing in the world happened as we entered the aquarium. It is like a big dome tunnel. The fish, sting rays, turtles, etc. are swimming above you and to both sides. As soon as we walked in, Brayden bent his neck backward to look up at the top of the aquarium! Never before has he done that! He usually keeps his head down or straight ahead. We were soooo excited!!! The rest of the Underwater World was not handicapped accessible at all. However, the security guards were very quick to help us to the nearest hidden elevator so we could make our way around. There really aren’t any handicapped signs to show us where to go, but what they lack in accessibility they most certainly make up for in kindness. As we were leaving, a Chinese man stopped Jason and asked him where he was from. When Jason said we were from America, he shook Jason’s hand and kept telling him thank you for coming to China. That was something we will never forget! We had a great time and loved to see all of the creatures from the Yellow Sea.
Next we were off to the temple. Outside of the Temple, they were selling huge sticks that looked like really big sparklers, but Aphea told me that it smelled like incense. We, well me, being from SEK was wondering what the heck kind of hippie party was gonna go on at this joint!! Not long after we entered, a group of young Chinese kids stopped me and asked if they could take their picture with me and with Brylie. We got to play movie star for the moment!! What a rush! The temple was, of course, at the very top of a big hill, so we had to carry wheelchairs and strollers up lots and lots of steps!!! We most definately could not have done it without all of the nice people who helped us out. At the first place, there were 3 small buildings. In front of each there was a big grill looking thing where people were burning incense and praying. Inside each of the buildings was a huge golden statue of Buddha. Lots of people were in there praying. Very colorful and pretty inside. I was a bit disappointed however to not see any tye dye shirts and peace signs, or hear Janis Joplin blaring on the speakers. Guess they don’t do that sort of thing over here! Up about 100 more stairs to a huge, very pretty building. It had big doors all around it with a very decorative roof line. I walked up the steps to see what it was, and a very sweet Chinese lady opened the door. I don’t think this place was really open to the public, but she invited us to come in. There was a huge, gold picture of a lion above an altar with a really big golden Buddha off to the side. They told us that pictures were forbidden in here, and that the book of Buddha resides upstairs in that building. They said they were cleaning that temple in preparation of Buddha’s birthday at the end of the month. After chatting with them for a bit, they told us that we could take pictures and they would prepare the place for us to do so because they welcome American’s to learn about their culture. They were very kind. On the way back down the “mountain,” a group of 3 Chinese girls wanted to take their picture with Brayden and Brylie. They were very sweet. All 3 of them helped me carry Brayden down the stairs! I’m sure Brayden was loving that!!!
Our last stop was the Trestle. It is basically a long man-made pier with a temple-looking building at the end. It stretches out into the harbor. The farther we walked, the colder it got. Aphea and Kayla are used to 80 degrees year ’round. They were freezing!! All along the pier there were locals selling shells, jewlery, and other items made from coral and shells. Lots of people begging. That was sad. The view at the end was great. Lots of fishing boats and two battleships docked in the harbor. We definately got a lot of stares here! The place was packed like sardines, and Brayden was hollering, so we really didn’t fit in! HOWEVER, the second best thing of the day happened here! I got my wish! A guy was riding his bike by us, just staring like no other, and ran smack into another guy! It was the funniest thing I had ever seen! I though Aphea was going to lose it!! It’s all about Kharma!!
After 8 hours of touring, we had another interesting ride back home, but arrived in one piece! Our drivers were fantastic! Very helpful with all of the kids. They even helped find us a table at KFC! All of this for about $45 USD. You couldn’t rent a bicycle for that at home, and you dang sure wouldn’t get the service!! Therapy as usual on Monday and Tuesday and then another spinal on Wednesday. We are on the downhill slide! Thank you all for your support! We are really starting to get homesick, but your e-mails and comments help so much. Talk to you soon!
April 28th, 2008
Hello all! We had two great miracles today! #1: Brayden and I were in the elevator heading down to PT. All of the sudden he lifted his head off of his lap, turned his head to the side and up to look at the lights at the top of the elevator. It was soo awesome! He had a huge smile on his face the whole time!! He did the very same thing on the way back up to the room and Aimee the nurse got to witness it. She was clapping and saying, “So beautiful!” That made this trip absolutely worth every headache!
#2: I booked a flight that goes directly from Qingdao to Shanghai Pudong airport!!! No bus across the city!! And I am sorry to report, I will probably not have any stories about escaping wheelchairs or women with gold teeth! Not feeling that adventurous!!
We had a lot of cleaning and laundry to catch up on between therapy sessions. That really stinks! We got a great suprise from home today! The package from my mom and dad made it here! Oh my goodness! We sat around that box for quite some time and made ourselves fat on doughnuts, Pringles, and junk food! It never tasted so good! I was so excited that they used a Daily Advocate to wrap some things in. Loved getting to read the court reports! However, as I turned to the back page, I saw the “Thank you” we had put in the paper when we left. We weren’t very happy! They misspelled some words, including Brylie’s name, and one of the sentences didn’t even make sense. I wrote the whole thing out for them- how hard can it be! The damn thing cost $35- at least they could copy it correctly for that!!! Oh well, we have powdered doughnuts, candy corn, and Pringles now- nothing can get us down!
Brayden is now getting accupuncture in his face. That was very hard to sit through! I was finishing up the laundry, so I didn’t see them go in! However, I about died when I got down there! They all were praising him and saying what a brave boy he is bc he didn’t even flinch!! What a stud!! About that time, Jason the therapist asked our Jason if he had ever done accupuncture or if he wanted to. Jason told him about his sinus problems, and before we knew it, Jason was flat on a bed getting accupunture in the face, head, legs and wrists! He couldn’t say no and look like a big ol’ wimp after what Brayden goes through everyday!! Have pictures, will e-mail soon!!! Oh, and we most definately got to the bottom of the mystery pizza tonight! It was tuna!! Wendy ordered us pepperoni tonight, and we actually got the right kind. We am going to be so sick of pizza that even “Kids Eat Free” buffet night won’t be tempting!!
We are gonna try to beat the 10:00 hot water cut-off and go take our showers now! Hope you all had a great weekend!
Love you and miss you all so much!
April 28th, 2008
A bit of an upset this morning, I didn’t end up getting to go to the knock-off market. The access to the stores was very bad, and there was no way that the kids could go. I had heard about another place just a couple of blocks away that was all on flat ground, so we decided to venture out again. Because of the no hot water after 10 or before 8, I hadn’t had a shower in a couple of days, so I was kinda stinkin’ up the place. I decided to grab a quick one before we left. I really didn’t plan on any company, so I didn’t lock the door this time. I was all finished, wrapped myself in a towel (basically an over-sized hand towel), headed out the bathroom door, only to run smack into Dr. William and the staff who were walking into the room. Boy was I embarrassed! I quickly tucked myself back into the bathroom and waited for them to leave. Jason comforted my by reminding me that they are professionals! Ahh! We finally got the kids around, and headed out.
The blocks here are more like country miles back home. After two blocks, we finally came to the alley that we were told about. I am telling you, this was a bit scary. The alley was like one lane wide. Not really any sidewalk. Big trucks, buses, taxi’s, cars, and motorcycles whizzing down it both ways rather quickly. It is not the nicest part of town either, lots of trash, setting water, and not so fresh smell. We are beginning to wonder just what in the heck we were doing! We cautiously continued down the alley and finally came to a huge intersection. People were everywhere! Shops on both sides of the streets. Clean for the most part. We really hit the jackpot. We managed to cross the street only getting honked at two or three times. After a bit of searching, I found the “okay” purse shop. I was not so impressed. They had a Louis Vittan bag out front that looked great from afar. I went to pick it up, and it wasn’t even close to Dollar Store quality. Pretty sure I hadn’t hit the jackpot after all. Oh well, we carried on. We came upon a little store with baby stuff. A nurse here is having a baby in August, so I thought I would try out my bargaining skills and buy her a gift. I picked out a little mat you lay the baby under and toys dangle down. I asked the clerk how much. She writes 160 RMB on a piece of paper. I look at it a bit more, and write 100 RMB. I knew she would say no, but that’s what I had been taught to do. However, she raised the price on me to 200RMB!! She put a big X through my 100 RMB and wrote 200RMB above the 160. She raised her voice at me and kept pointing back and forth between the 160 and 200. So, needless to say, I didn’t bargain anymore….
After not so great luck at the market, we decided to find the closest KFC for some lunch. Bad timing. It was like McDonald’s after a ball game, but with about 200 people packed inside. We couldn’t deal with all the stares, so we decided to walk towards the RT Mart. We figured it was about 3 blocks, so no sweat. SOOO about 10 blocks later, and about 20 stops for locals to take pictures with Brylie, we make it to the KFC at the RT Mart. As Gary Brown would say, our belly buttons were eating our spines we were so hungry! When we walked in, the same girl that always helps us was working. I could see the look of dread in her eyes- “Oh god, it’s the American’s that like to order sooo many chicken wings.” Jason did his level best to order enough for all of us, but again, we were rationed. The very kind staff at KFC found us a table and helped us get situated. It kind of stinks when we eat out bc we feel like we have to rush bc people will literally stop at our table and stare at us while we eat. It is crazy! I really think they are somewhat in awe of American’s. I had to grab a couple of things at the RT Mart since we were so close. I tell you, the kids have become little camera stars over here. Jason had taken Brayden outside to wait for us, so Brylie and I took the opportunity to check out some purses. In the shop, Brylie started blowing kisses to one of the clerks. Like 5 seconds later, you would have thought we were on the red carpet. Camera’s were flashing, people were tugging on my arms bc they wanted to touch her and take a picture with us. There were seriously about 20 people surrounding us. They finally let us through to leave just about the time Jason was coming back to look for us. That was quite an experience.
After our long walk, it was time to get ready for the going away party. John the Aust-Italian made spaghetti and meatballs. I got a couple of cakes, some fruit, cheese and crackers, and chicken strips. It was quite a feast. I was really happy that the party turned out so well. We have made some really amazing friends here. You know, you think you have it rough until you really get out there and talk to other people. Our problems seem so small. We have met people from all over this world, and sadly enough, everyone is here because it is their only chance- their last little bit of hope. Dennis is leaving Sunday, but I overheard him talking about his illness in therapy one day. (He has motor-neuron disease. He cannot use his arms from the shoulders down.) He was saying how the docs in New Zealand had left him for dead basically. This is his only chance. Then he said something that really put all things in perspective for me- “You have to be like water. No matter what kind of barrier you put in the way, water always finds another route, another way to escape.” Everyone here is like water. That may sound a bit silly, but we have all decided that we are not going to accept it when the docs say that there is no more that can be done.
Hope you all have a wonderful Saturday! Brown family, best of luck at the wedding. I so wish we could be there. You will be in our thoughts!
Love, Jason, Lorie, and kids
April 27th, 2008
Sorry I haven’t blogged in awhile. The internet was down for a couple of days last week, so I couldn’t really post anything. Friday morning, it was therapy as usual. Brayden was a bit sore, but Tom his new therapist is very diligent. I like that about him. It is like he is in total concentration when he works with Brayden. They BOTH struggled through, and again, Brayden fell asleep in the stander. That is becomming the norm!
We, along with Cindy and Ching, had the pleasure of planning our first “going-away” party for Kenneth, Kathy, and Bobbie from California and Dennis and Tanya from New Zealand. I had to make a poster to announce the party, so Jason took Brayden to electro-therapy and Brylie and I made a poster. I had to laugh- when I was finished, we carried it down to hang it on the nurse’s station. On the way, I met Dr. Ma, and he looked at the poster and asked me if Brylie made it! I said, “No, I did.” He just said “Oh,” and nodded. I’m not sure if he maybe didn’t mean to ask it that way or if he was just not at all impressed with my artwork. I chuckled about it everytime I looked at that dang poster!
Anyway, at 1:30 the nurse came in to start Brayden’s IV for his treatment. It was a BREEZE!!! I love IV treatments!! Well, you know what I mean!! In comparison to the spinal anyway. That little nurse came in and had that IV going in no time! Seriously, Brayden didn’t even make a peep. I climbed in bed with him and we snuggled up and watched The Runaway Jury while he got his cells. Very comfortable. I wish we could start the IV in the room before every treatment- he does so much better when we are there to comfort him. That would also make the OR situation not bad at all! After about 30 minutes of fluids, he was good to go! A little bit tired, but not bad.
We decided to try our luck with the pizza delivery again. We ordered pepporoni, and made sure that Jack looked at the menu real close! While waiting on the pizza, I had to make a run to the RT Mart to get things for the party on Saturday. Luckily Kathy rode along with me. I am kind of a chicken to take a cab by myself. I know I would say the wrong thing and wind up at the other end of the city!! After a quick whirl through the RT, we were headed out- or so we thought! We got about half-way to the cab, and Kathy says, “Hey, I think I need an ice cream from KFC.” In my mind I was like, “Oh my gosh! THANK YOU, THANK YOU!!” However, I replied with, “Oh, okay. I’m sure Jason and the kids would like it if I brought them some home!” I’m so sly….. So, we get in the cab, and I am feeling on cloud nine! It is Friday night, we have pizza on the way, ice cream sundaes, and Budweiser beer in the fridge. What more could we ask for! Luckily Jack the intern and Glen from UK helped us with the groceries to my room. I open the door to our room, and about DIED! Not kidding! It stunk really bad in there, and Jason has this not so good look on his face. He says to Jack, “Well, we got the wrong pizza again!” Poor Jack turned every shade of red possible. I have to tell you, this is seriously the nicest guy you will ever meet. He was so embarrassed and upset. I opened the box to look at it, and the crust part was gone and all the toppings had been scraped off. When everyone left the room, Jason says “I just couldn’t do it. It smelled like fish. I just couldn’t choke it down this time! The kids and I ate crust and left the toppings.” You know it is bad when Jason won’t eat it. We have since figured out that the seafood pizza is right below the pepperoni on the menu. I think maybe we were pointing to the wrong line when we ordered. So it wasn’t pork or even dog that we had last time, it was fish! Lovely! We still had ice cream and beer. Can’t get more American than that! We got the kids all settled in for bed, and I prepared myself for my very exciting Saturday of going with Bobbie to the knock-off purse place! So exciting! I was practicing my bartering skills in my sleep!!! More later….
April 27th, 2008
It has been brought to my attention that I am scaring parents about coming to China because of what I am writing in my blogs. Also, by explaining the culture here, I am being offensive. To all parents who are reading this, here are the facts.
The rooms are fantastic. The staff is out of this world. I cannot say enough about the treatment we have received from them. They are always very willing to help us with everything. The doctors are very knowledgable, and I would trust them with my children any day of the week. My experiences in the OR were not pleasant. I will not lie about that. This is a newer facility, and they are working out the kinks in that area. My son screamed because he was scared. ALL CHILDREN cry when taken away from their parents- whether they are at home or in China. I did not expect to be going down to the OR, so that whole experience was very scary for me. As parents, you should not assume anything. Ask questions. I apparently did not ask enough. I assumed that our experience would be exactly the same as the others that I had read. No barbaric treatment, nothing to hurt children goes on here. As a parent, it is very hard to trust the care of your child to anyone, especially when they are complete strangers. The therapy staff, doctors, nurses, and others have gone out of their way to help us be very comfortable here. They are fantastic. I have the upmost respect for all of them. They have provided hope for my son when all doctors in the US had written him off. We have only had 3 injections, and we are already seeing improvements. Miracles are happening, and it is because of these people.
As far as the cultural information, I did not mean to offend anyone. I was just trying to explain a few differences. I did point out that I am quite sure that many of the Chinese think that we are very weird. Well, I know they do. They stare at us often. Not many American families roam the streets of Qingdao I am quite sure. For the most part, the locals are very helpful. I will not lie, there are a few that can be down right rude, but that isn’t the norm. I certainly did not at all mean that the staff didn’t brush their teeth!! They are very clean, very neat, people. I was referring to the two rude locals I have encountered!
Sorry if I hurt anyone’s feelings or scared anyone about coming here. Neither were my intentions.
April 27th, 2008
Good afternoon from China! Sorry we didn’t blog yesterday, but to be honest, it was very boring here. Brayden had to go to therapy early, so we missed the docs. It was very cold and windy, so we weren’t about to go outside. Our biggest excitement yesterday was guessing exactly what type of pizza we got mistakenly delivered for lunch. We ordered pepperoni, but we got something that Jason hoped was pork with a swirl of some white sweet sauce on the top. I wouldn’t touch it, but Jason and Brayden loved it. Jack the intern came in after it was almost gone, and told us that it was probably chicken. I was thinking it was left over dog from the winter stash. Still not buying the whole chicken thing. We decided to be safe for dinner and get KFC. It is really very good. We had chicken nuggets and french fries. Jason ordered wings. It is no wonder why people here are so skinny… one order of wings consists of 2 wings. For those of you who know Jason, that isn’t even an appetizer!! He learned that the last time we had KFC, so he tried to order 6 orders (12 wings). However, the clerk said, “NO!” The most he was able to order was 6 wings total. They must have a cut-off or something.
The weather is really nice today- in the 70′s. It makes us feel right at home- 4O yesterday, 70 today. The docs did see Brayden today. He tracked the light and put his hands over his eyes when they shone the light directly in his eyes. They also said that another patient with epilepsy stopped having seizures completely after the stem cells, so that gave us hope in that department. Brayden seems to be tolerating his therapy a little better. The therapist is stretching him in full range of motion with his arms/hands and legs/feet in appropriate position. That was basically impossible before we came.
After PT, we decided to brave the local scene again and take the kids to Century Park for another picnic. We managed to give them all something to stare at again. I can’t wait until one of them falls off of their bike or moped bc they are staring at us! The park was really pretty. I don’t think the kids were all that amused, but at least we got out of the room! I was a little disappointed, no one peeing in the park! After a really long walk back, the kids were out! The cleaning lady was waiting on us. I think she has the hots for Jason. She just told me that I did good and gave me the thumbs up. Before long, we are going to start hearing knocks at the door saying “Me fluff your pillow!”
I can’t figure out some of the things they do over here. Not that any of what I am going to say is wrong- it is their culture. They are very conservative people because many are very poor. I’m sure they think we are weird and very wasteful! Some locals seem to wear the same clothes for several days at a time, and for some (the mean man down in the OR) I am pretty sure that brushing their teeth isn’t something they do everyday- or even every third day! You have to be very careful when ordering ice cream. Another family got ice cream that was actually frozen beans! They also serve sweet pickles with their pizza! Oh, and I went to the RT Mart earlier this week, and was sooo excited to find Cheetos and Lay’s Stax. HOWEVER- the Stax come in seafood, chicken, beef, cheese, or vegetable flavor. The Cheetos come in regular cheese or pea flavor!!! I was so disappointed! I grabbed some of the cheese Cheeto’s- I guess we’ll give ‘em a whirl. We did try the Pepsi and Coke, and they both taste pretty good. We found Budweiser beer, but have yet to try it out. The bottles of beer here are really big. The Budweiser products come in packs of 3.
Brayden has an IV treatment tomorrow, so pray that the nurses will hit a vein quickly! Poor kid, he has been poked more times since we have been here than he has in his whole life!! We have Saturday and Sunday off, so I think we are going hunting for the Coach purses that everyone is talking about. Maybe to the beach on Sunday. Hope you all are doing well. Please keep sending comments and e-mails. They really help us get through the days.
Love to all!
April 24th, 2008
First thing this morning Dr. Ma came in to visit Brayden. Again, Brayden tracked the light from side to side with all the lights on in the room!! All of the staff was very excited, so that made our day!!! Brayden seemed to have a headache this time. He has been screaming pretty much all day, so I’m afraid it is a pretty bad one. We decided to go ahead and take him to PT hoping it would calm him down a bit, but it was pretty intense. He seemed very uncomfortable. I can’t even explain the difference in therapy here compared to at home. It is like an hour or so every single day. 40 minutes of that consists of stretching him into positions I can’t even describe! The other 20 minutes he spends in a stander for weight bearing. I wish I could pack up these little Chinese men, and take them home. They are so good! Heck, the salary they would make at the interlocal would seem like a million bucks to them!
While at PT, Cathy from California asked if I would like to go with her to the RT Mart to get some things for a going-away party for our friends Alicia and Chris from Vegas. Brylie and I bundled up and headed out with Chris, Cathy, and Tonya from New Zealand. This was my first time in a cab, so I must say, I thought I was going to have to check my drawers when we arrived at RT. It is like Joplin with no traffic signs or lights at rush hour!!! Wowza! So the fish floor at the RT Mart was at it’s prime today! Smelling as disgusting as ever. If I could bottle that smell, I would sell it as a diet drug. One sniff of that odor, and you won’t want anything to eat for hours! Anyway, we were trying to find a nice gift for a caregiver, and as we turn down the aisle toward the ideal gift, we get a gift of our own. Chinese Grandpa is holding a plastic bag while Chinese Grandson pee pees in it right in the middle of the aisle!! I could not believe it. I don’t mean like finding a corner or anything- I mean right in the middle of the aisle, pants around ankles and all! Gramps then proceeds to tie up the bag of potty, sticks it in the cart, and away they go!! We all were rolling, but managed to finish our shopping for the party. On the way out, we stopped at KFC. They serve soft-serve ice cream sundaes there- a lot like McDonald’s at home, so Brylie and I picked one up for Daddy and Brayden, said a prayer for our safe return in the taxi, and headed back to the hospital. Cathy and I had so many groceries, that we couldn’t carry them all up to the rooms, so Brylie and I sat on the curb guarding the sacks while Cathy went upstairs to retrieve Brylie’s stroller to use as a cart. Now let me tell you, Brylie and I got a lot of stares! I’m sure not too many Americans sit on the curb of a hospital surrounded by groceries in the freezing cold!
Not long after our return, it was time for Brayden to go to accupuncture. A lady from New Jersey mentioned that they got accupuncture for her husbands drooling, and it made it stop completely. We thought we would give it a whirl- what could hurt worse than accupuncture in the head- under the chin should be a breeze. WRONG, WRONG, WRONG!! Martin stuck that needle all the way into his tongue from under Brayden’s chin and started to twist it. Brayden came unglued and so did we! We made him stop immediately!! I don’t care if Brayden soaks a million shirts a day- I don’t ever want to do that again! We felt really bad for him.
The big going-away party started at 3:30. I couldn’t believe how well it turned out. Giovanni, the Australian-Italian, cooked spaghetti and potatoes. He cut up all the fruit we bought and made really nice fruit plates. He used to have an Italian pizzeria and restaraunt, so he really knows how to cook! How lucky are we! Hence the title- “We ate like kings!” It was really nice to hang out with all of the families. The amazing part was that all of the doctors on duty joined us. They brought their own camera’s and asked for pictures with everyone! That is certainly not the kind of service you would get in the U.S.!!! Really the staff is so kind!
At evenings end, our friends from Vegas came down to hang out with us for awhile. We are certainly going to miss them! Good news though- Alicia is in a wheelchair- paralyzed from the waist down from a motorcycle accident when she was 16. After 6 treatments, she can feel her kneecaps move when she did the electro-therapy! This is amazing bc the docs say that most spinal cord injury patients don’t see results until about 6 months after treatment. Such amazing things going on here! Still can’t understand why people in the US don’t demand that we provide this treatment at home. It is America for crying out loud!!!
Hope you all have a great Tuesday! Good night from China!
April 22nd, 2008
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