Posts filed under 'cp'
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
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