Well, Brayden just finished his second spinal injection. Man- it really tests a persons strength. Trying to draw the line between protective parents and the ability to let down your guard and let in the possibilities is so tough. I really thought it would be easier this time, but because it did not happen as it did last time, Momma kind of lost her cool. Last time, they gave him an injection to make him sleepy while Jason was holding him. He was asleep when the OR staff took him away and when they put in the IV. This time, they took off his clothes, laid him on a bed and wheeled him away- totally awake. We could hear him crying- I’m assuming while they were doing the IV. Momma was not a happy camper, and the staff in the OR knew about it! Of course none of them spoke English, but they knew we were not liking it one bit. I can’t imagine how he felt getting taken away from us and then jabbed with a needle by a bunch of strangers who can’t even comfort him in a language we understand. While we were waiting, some guy that works in the OR kept jabbering Chinese at us. When I asked our translator what he was saying, she just shook her head. It must have been not very nice. My fear of getting Kung-Fu’ed overtook my wanting to kick his butt. When he came out, he was at least a little bit awake. I could tell that he had been crying, so that was really upsetting. He is recovering from the anesthesia much quicker this time, so maybe it was better that he didn’t get that first injection. I hate it that we can’t explain all of this to him. He must think we are torturing him. I just hope that because of this journey, we will be able to explain it all to him and he will be able to understand every bit of it. We have to remember that four weeks is such a small time when you compare it to the rest of his life. Please pray that he doesn’t have a headache tomorrow and that we continue to see progress. Gotta go- Brayden is waking up! Love to all!
April 21st, 2008
Hey all! We are just hanging out in the room, waiting for Brayden’s injection time, so we thought what better to do than write to share our exciting news. The doctor came in this morning to check Brayden. He waved his hand in front of Brayden’s face, and he flinched. The dr. sent his nurse after a pen light. Brayden tracked the light for quite some time!!! Although this isn’t a huge change since he would somewhat pick out a light in the dark, he never has tracked a pen light when the room was fully lit. We almost started crying!! Just a little while ago, Jason wheeled him up to the tv and he looked right at it. We are being cautiously optimistic. Hopefully he will become more consistant and we can know for sure. The doctors seemed to be happy with his progress.
On a not so great note, I guess my complaints about having to go down to the OR fell on deaf ears. We were told by the dr. this morning that we would have to go back there again today. They promised that the sheets would be clean and that an interpreter would accompany us. I still don’t feel any better about it! The part that really aggrivates me is that there are two other children here now, and both of them went to the 9th floor for spinals, and they only got Valium- no anesthesia. Again, I am not very happy, but it has done me little good to explain. The doctor insists it is very safe and much better for Brayden since he tends not to cooperate. If it isn’t any better this time, I have decided that I will just ask that the rest be done through IV. I don’t want to run the risk of infection. You know about that crazy Burgan temper- I sure would hate to have to whip it out!!! Hell, it would be my luck that the guy would Kung Fu me or something!
We didn’t end up getting to go to the beach yesterday. It was rainy and cold, so we spent the afternoon sleeping and watching movies! What better to do on a rainy day….. Hopefully we will get to go next weekend since we have both Saturday and Sunday off.
Ryan M.- How did prom go?
Nolan- Happy late birthday! I hope it was a good one!
Craig- If you even think about sending us Chinese food in that package- we will forever disown you!
Well, I do have one last favor for you all to do for me when you finish reading this. Get up, go into your laundry room and KISS YOUR WASHER AND DRYER! Seriously- tell them how much you love them!!! And while you are there, open the cap on your detergent and just take in the fantastic smell! You think I am joking- here is our laundry situation- the hospital has a laundry service, but I was warned before coming that your clothes will smell really bad if you use the service. They don’t use dryers over here. Everything goes on the line. As we told you before, the air outside constantly smells like bad breath and smoke. I decided to bring laundry soap so I could wash our clothes in the sink. That is soo much fun! I thought I would just hang our clothes up in the bathroom to dry to avoid the nasty smell outside. HOWEVER, our bathroom smells like when our toilets or sinks back up at home. I mean everyday it smells like that. Not even thinking about it, I hung up our clothes and shut the door. The next morning our clothes smelled like a sewer! I decided that bad breath was a step up from sewer, so Jason, being the handy fellow that he is, made us a clothes line out of our ethernet cable out on the balcony. All set! WRONG! It rained all day Sunday. Back to the sewer smell for awhile! OHHH to smell turkey crap! I think it would be better!!!
Almost time for us to go. I’m gonna go snuggle my boy! You all take care! We love you and miss you! Also, we can’t thank you enough for the comments, e-mails, and support back home! We will never forget!
April 21st, 2008
Hello Again! I guess I should clarify my blog yesterday. The doctor does think that the stem cells will help everything- he just won’t get the results that he would have 5 years ago. We knew that already, but it just hurts a little to hear it again, especially when we have been told from all of our neuro’s from day one that stem cells were not an option! We can only pray for the best results we can get at this time. ANY improvement, no matter how small, will make this trip 100% worth it!
On a lighter note, we had a pretty fun day today! Brayden was so sore this morning from PT that he couldn’t even move! We told the therapist that he needed the day off! Poor kid- I know he is probably thinking he is getting tortured! Jason had to make a run to the store this morning, so the kids and I did laundry. Not too eventful until a nurse and I scared the pee out of each other! They have a really soft nature, so when they knock, it is very hard to hear them. I was putting away some laundry, and turned around and there she was! It was instant reaction for me to scream a little, and I think I really scared her bc she screamed too! She kept saying- So sorry, so sorry! Glad she didn’t walk in to me be being naked or something! Jason and I decided to brave the local scene, and take the kids for a picnic in the park. It is really beautiful. Lots of fountains, flowers, and little boys doing their business just about anywhere! Yep, they will just whip it out wherever they feel like it! It really made us feel at home!!! Heck, the little kids here have slits in the bootie part of their pants so they can just squat when they have to go. Tracie, I think I will bring some home for Kory! When we returned, Brayden had accupuncture. I think he is starting to really like it! He was awesome! When we got back to our room, the cleaning lady was there. She has made friends with Brylie. Brylie has taught her some English, and she taught Brylie how to say good-bye in Chinese (shay-she-in). Very cute! The lady calls the kids Barden and Barley. We got adventurous tonight and ordered chicken strips from what they call a bbq place. From what we heard, their bbq consists of something that gives you the poops! Luckily no one has had trouble with the plain strips, so we’ll see!
We hope to go to the ocean tomorrow, so probably no blog until Tuesday, since Brayden has his next injection on Monday. Thank you all again for the comments! We are suprised daily by the outpouring of support! I didn’t even know so many people knew that we were coming!! It is such an amazing feeling to know that you all are pulling for us! Hope you all have a great weekend!
April 19th, 2008
We had quite a day today! It started out a bit rough, but ended on a fantastic note. Early this morning, we were asked to go to the physical therapy room to meet with a dr. that specializes in cerebral palsy. He is a professor here, and works at another hospital. For a minute I thought we were back in the US. He told us that Brayden’s case of CP was severe, his spasticity in his arms and legs is severe, that he basically had no intellegence, and that no surgery or medicine would ever help him. He questioned if Brayden even had any therapy at all at home- he was very suprised when I told him yes. He also told us that he was afraid that Brayden was too old to get the maximum benefits, but that he did believe stem cells would help him. Talk about a shot in the gut! How do you explain to someone that we have been begging our neurologists for 7 years to look into the possibilities of stem cells for Brayden? Each and every time, we were told that there was NO chance for Brayden, especially not stem cells from a third-world country like China! I cannot express how angry it makes me when they tell us how different a life Brayden could have had if we had only done this earlier! For all of you who are reading this, please educate yourselves and those around you about the truths of stem cells. Because of our stupidity, political ignorance, and religious barriers, children like Brayden are suffering- and for no reason other than being uneducated.
Okay, now that I am off of my soapbox, a run-down of the awesome parts! Brayden went to therapy again. Talk about aggressive- but in a good way! He was very sore. He screamed at Jason (the therapist) every time he moved him. Thankfully, they are making a plan for us to take home. He also tolerated the accupuncture much better today. I am sorry to report that I am not able to upload any pics of that to this blog- the file is too big. I know you were all dying to see pics of him with needles poking out of his head! Not long after, we had the opportunity to speak with the COO of Beike- the company that is providing the treatments. That was wonderful. They told us that they had been reading our blog! At first I was a bit nervous, but then it made me realize that they are doing it to better their services. He was very willing to answer our questions, and was right on top of our concerns about the yucky OR! We definately got lucky being able to be a part of their visit.
This evening we got to hang out in the commons area and visit with some of the other families. That was alot of fun. There are people here from the US, Australia, Romania, New Zealand, and Pakistan just to name a few. Very interesting to hear about the different cultures. Jason and I are just hanging out, watching the kids sleep, and enjoying a glass of Qingdao beer. Chris, our friend from Vegas, is our bootlegger. He brings us a little glass in the evening! I tell you what, we were spoiled tonight! I made grilled cheese sandwiches and we had beer! What a treat!! Speaking of treats, we did find out the truth about eating dogs….. IT IS TRUE!!!! They eat dog in the winter bc they believe it will keep them healthy. YUCK!!! I would rather be sick. Will talk to you all soon! Brayden has his next spinal on Monday- Sunday middle of the night for you back home. Please keep him in your prayers! Love to all, The Johnson’s
April 18th, 2008
Our blog is finally up and running, so we can read the comments you all have posted. We cannot thank you enough for your kindness and support. I was really very humbled to see all of the messages we had waiting for us! Thank you, Thank you!
Brayden had PT, accupuncture in his head, and electro-therapy on his arms and legs today. He was such a trooper. I took pics of the accupunture, but will have to post them tomorrow. It was a little painful for him, but heck, when your a stud, you can get through anything! You should see these Chinese guys who do his therapy. They are like monkeys! The climb all over the bed and bend Brayden into positions he hasn’t seen since he was in the womb! We ventured out of the hospital today to a place called the RT Mart. It is like a Wal-Mart and mall all in one. They have two levels, and you can get to each level by a flat escalator thing. Let me tell you though, the bottom floor was the stinkin’est place I have ever been to- and remember, I work at a landfill! They have live turtles in bags for you to buy. They also have tanks of big fish you can dip out and take home. They don’t package any of their meat. It is cut up and laid out for the locals to dig through- and I do mean dig through! It was like us going to the store looking for a good baking potatoe. That is how they do their meat. We couldn’t get the heck out of that section fast enough! Jason and I have been living on dry Cheerio’s and whatever the kids don’t finish, so we were happy to find Skippy peanut butter and Oreo cookies at RT. Guess we will live on those next week! We have ordered pizza twice, and it was okay. They serve sweet pickles on the side w/ pizza here. Not a combination I would have ever dreamed of. We would both kill for a cheeseburger right now! A guy down the hall brought us a sample of the beer they brew here locally. It was really pretty good. Kind of a scary thought- Chinese people driving under the influence when they dang sure can’t drive sober! I am trying upload some video of how they drive and what they drive. I’m pretty sure these vehicles wouldn’t even be allowed in Southeast Kansas!!
Again, thank you all so much for posting comments! It is so great to hear from you at home. Our love to all!
April 17th, 2008
Knee-how from China! Brayden made it through his first spinal injection with flying colors! I must say it was a very scary process. I guess bc they do things so differently here. He had to be put to sleep for the injection bc the dr. was afraid he wouldn’t cooperate- imagine that! When we took him down to the operating room, not a soul spoke English! They had Jason sign a paper that was totally in Chinese. They were doing a few things to him, and we had no clue what they were saying. Then they came out with a shot for him. I asked what it was, and they showed me sleepy. A few seconds later, Brayden was sleepy, and they took him away. Wow was that hard. We doubted ourselves big time. All I could think was “What in the hell was I thinking!” Very scary! About thirty minutes later, they wheeled him out, completely covered up. No monitors, no oxygen, no recovery room- nothing like at home. That freaked us out a bit. We came back to the room, and he slept for about 7 hours. Thank goodness! He had to lay flat for 6 hours, so that part was a breeze. The doctors and nurses are very kind. A team of 5+ come in every morning to check on us. We have pictures of the family all around the room, and they always ask about you guys. I guess some of the doctors were playing UNO w/ another family from the US last night! Certainly wouldn’t get this treatment in the US- well unless they charged you of course! Funny story, 2 little nurses came in to take out Brayden’s IV this morning. I had to hold him down so he would be still. Apparently Brylie didn’t like that too much bc she started hollering at them and kind of hitting at them to leave him alone. Very cute! She loves her big brother! Brayden had his first physical therapy session this morning. That too is very different. They really worked him over. We get to do that everyday. Sure wish we could pack these great Chinese therapists in our suit cases and take them home with us! He gets accupunture and some other therapy this afternoon. I hope to send some pics later. I am trying to find out why I can’t view your comments yet. Please keep posting, and hopefully we will get to read them soon!
Love to all!
April 17th, 2008
Well, we made it! Wow- I could write a novel, but I will try to keep it short. We did great to Chicago. Brylie slept and Brayden listened to his IPOD. Chicago Airport was quite a treat! After a good ole American breakfast, we decided we better do diaper duty. Brylie decided she was going to give me a treat- a diaper full of diareah. FANTASTIC! Thank god it only got a little on her pants, so after a quick rinse and dry- she was good to go! I proceeded to take Brayden in for a quick change. Poor kid- you would have thought I was beating him. You can’t change him on the counter, and I wasn’t about to put him on the floor, so I held him up with one arm and changed him with the other and my knees. Oh if you could have seen the looks I got when we walked out of that stall! I can’t imagine what they thought I was doing to him! So we are now into the flight to Shanghai. Brylie is sleeping, Brayden and Jason are munching down on what looked like roast. I reach down to wipe off Brayden’s shirt and about died! He has the diareah too! I mean it has leaked out of his diaper, down his leg, up his back, up to his chest! I’m thinking- what in the hell are we gonna do now. After about 10 minutes of waiting on a bathroom to open up, we just decided to change him right there. Those poor, poor souls sitting around us! Thank god I had packed extra shirts, so we just threw his shirt away and washed out his pants as best we could. Brayden was w/o pants for the remaining 10 hours!! Thankfully, the rest of that flight went great! The kids were AMAZING!!! Trying to figure out what to do when we got off the plane was quite a treat! I knew the bus that we needed to take to the other airport, but had quite a time explaining it. These Chinese people go a mile a minute! Remember 8 bags, 2 kids, stroller, wheelchair! We find the bus route, and get in line. Well, lines don’t really exist in China. You push your way through. So basically we got trompled. We get all of our bags on the bus, and are ready to board, only to find out that this bus line is not handicapped accessible. In order to accomodate us, they put Brayden’s chair in the stairway on the bus. Off we go-crammed in like sardines! Now remember, we are all smelling like diarreah and 16 hours of staleness! I’m sure the Chinese are convinced that American’s really smell! Well, I have it in my notes that this bus ride should take 15-25 minutes. An hour into this trip I am panic city!!! Apparently the 15-25 minutes was the interval bt the buses! Okay no sweat- WRONG!!! We get to the other airport, and the driver opens the door. Out goes Brayden’s chair into about 100 people! We try to find our check-in gate now to catch Chinese flight to Qingdao. Obivioulsy noticing our family could not say/read much Chinese, a lady (we will call her Ms. Golden Teeth) offered to help us. She carried our bags, pushed the kids, was really helpful. I’m thinking, “Man, these Chinese people are great!” So we find our check-in counter, wait in line, and start to put our backs on the checked luggage belt. The airline lady says “Wait! Go by ticket for baby, then come back!” She did not care that I had been told by her airline that Brylie didn’t need a ticket- she demanded differently. So I leave Jason and the kids with Ms. Golden Teeth so I can get a ticket for Brylie. After trying to explain what we needed, I was having NO LUCK. They were not going to let me buy one for her. Thankfully Ms. Golden Teeth came over and explained it all to the ticket guy. While I am waiting for them to run my credit card, Ms. Golden Teeth says “I leave you now.” So I thanked her and waved goodbye. She stood there and finally pointed to Jason’s billfold. I smiled and waved again. With a stern look, she pointed to it again. All I had were American $100 bills, so guess what- Ms. Golden Teeth got $100 from Lorie. I finally meet up with Jason and the kids- only to find out that he had already given Ms. Golden Teeth $20. What suckers!!! We get our bags checked, and they tell us that Brayden’s wheelchair and Brylie’s stroller has to be checked there. So they bring us another chair for Brayden to use. Off we go through security. The nice Chinese man pushed Brayden on through. Jason and I are still trying to get through, and I hear Brayden laughing. He had slid himself out of the chair and fell between the footrests and under the chair, and the nice Chinese man was trying to get him out from under it. Oh my gosh- what a sight! Brayden thought that was damn funny! We finally made it to Qingdao at about 9:30 p.m. The staff was very nice that picked us up. They all loved on both of the kids. Funny little thing though. We were SOOO looking forward to showers, but in China, no hot water from 10:00 pm to 8:00 am! So we hurried up and showered the kids, but Jason and I are still stinking it up!!! There is also no operating heat during this time of year, so we all froze last night. I tell you, we American’s sure do take things for granted!!
We met the doctors and staff this morning. Brayden got poked for the first time, but he did great! We found out that he will be getting his first spinal treatment tomorrow. As you all know, we are VERY nervous about that part. Please continue to keep us in your prayers. We love you all and miss you so much! I will post after Brayden’s injection tomorrow.
April 15th, 2008
Well this will be the last message we write from the USA! As many of you know, Jason and I have really struggled with not letting the anxiety and fear of this journey overshadow the possibilities of amazing results for Brayden. The staff at Brayden’s school had a prayer blanket made for him. On the back, they had written bible verses. As I unfolded the blanket to read the verses, my thumb was on the verse “Be not afraid, only believe.” Mark 5:36. That really hit home for us, so we have decided to make that our “motto” for this trip. We do believe that we have been given the chance to make a difference for Brayden. If we let fear take over our lives, think of all the amazing opportunities and experiences we would miss out on- even if that means hauling two kids, 8 bags of luggage, a stroller, and a wheelchair around the city of Shanghai!! Please pray that goes okay! We will miss you all very much! Talk to you when we get to China!
With love,
Jason, Lorie, Brayden and Brylie
April 12th, 2008
Glad to see you were able to access Brayden’s blog! Only 7 days until our big departure! We are all very excited, yet getting a bit nervous. Please keep us in your prayers as we prepare for this life-changing event for Brayden!
Love to all!
April 7th, 2008
Welcome to Stemcellschina.com. This is your first post. Edit or delete it, then start blogging!
April 2nd, 2008
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