Brandon's Fight For Sight

Brandon turns 9

2009-07-25T19:47:00.002-06:00

It's hard to believe Brandon is 9 today. This time last year was such a hectic and exciting time for us as we prepared to go to China. Brandon is doing quite well with his sight. A couple of weeks ago we were driving by a school and Brandon asked if that was his school. It was exciting because no one had mentioned we were driving by a school. It wasn't his school but it was A school. He can tell us the color of the vehicles that we drive by or park by. He rarely has a bad day which is great because those were horrible. I would feel so bad for him every time he bumped into a wall or tripped over something. He can play hide & seek with his little brother now (and actually find him!) Oh and he's doing absolutely incredible with his video games. He loves to race motorcycles on the game AND HE CAN BEAT IT! We are just so proud of him and his accomplishments that he's made. Awhile after we got back from China, I was a bit discouraged because I wasn't sure if the things he was seeing was new or if he could see them before treatment. I was afraid that I wasn't the best person to judge his sight. His eye Dr. wasn't being straight with us because he didn't want people to think the stem cell therapy actually helped. He encouraged us before we went to China then afterwards his attitude had changed. I believe the Dr. had received some heckling from fellow Dr's. We have not been back to see him since. I would like to see where Brandon is at on his sight but if the Dr. cannot give him an accurate examination, I refuse to take him back. I'm currently looking for another Dr so hopefully we'll have an update soon. Brandon is looking forward to starting school on August 16th. I'm sure once it starts he won't be so excited but that's normal.

A New Blog

2009-05-15T03:51:00.003-06:00

First of all let me say that Brandon is still doing well. He gets out of school in 13 days. Everyday he marks it off on the calendar that way we won't forget :) Like he'll forget when school gets out. I've decided to change the dynamics of this blog. Instead of telling everyone the same old "Brandon's doing great". I've decided that since we're past the whole China experience, I'll focus on our family in general. Of course if there's anything new to report, I'll make sure I post it on here. So without further notice, welcome to "our family blog".

Spring is in the Air

2009-04-29T04:46:00.002-06:00

I just realized how long it's been since I updated Brandon's Blog. I always thought that once we returned from China that I would keep it current and update regularly. Guess I was fooling myself. Brandon is great. Not visually but over all he's doing quite well. I would say visually we haven't seen much changes (if any) since the last update. I am disappointed in that aspect because I thought we would continue to see improvements for a year after being in China. However his bad days are less frequent than before. Before treatment he would have days where he couldn't see anything. He still has those days but it happens less often than before. He's still experiencing severe headache's and for that I'm a bit concerned. He has suffered from headaches for most of his life and they don't seem to be slowing down. We are thinking about taking him back to the neurologist but we know what he'll say. They want to check his cranial pressure by placing these bolt like things under his scalp in order to monitor the pressure for 48 hours. We really don't want to put Brandon through that but our options are limited. I'm sure we'll make a decision in the next few weeks. Other than that, Brandon is growing really fast. I think he's going through a growth spurt. He's looking forward to school being out next month and for his birthday in July. It's hard to believe he's going to be 9. Time really has been slipping by us. It still doesn't seem like it's been 8 months since we were in China. 8 MONTHS. Still doesn't seem possible.

Happy New Year!

2009-01-21T02:33:00.003-07:00

I can't believe it's 2009 already!! 2008 was filled with excitement, disappointment, pride, heartache, and above all....hope. I can't believe that in one year we discovered that there was hope for Brandon in China, raised the money AND spent 6 weeks in a Chinese hospital. Through it all, Brandon was such a trooper and for that, I am very proud to be called his mother.

First Christmas "AC" (After China). Brandon loved Christmas this year. He enjoyed looking at all the Christmas decorations and even helped decorate. (He was even disappointed when it was time to box everything up for the year). For Christmas he received....TOYS TOYS AND MORE TOYS! He got a new XBox and some other video games. He also got a glow in the dark drawing board. The list is endless and for the moment my mind is blank but he received several items to help stimulate his vision. Oh and he received a stack of books.......IN PRINT!! A couple of weeks before Christmas he received a CCTV which has been a wonderful aid. He can look at his books without straining with the CCTV.

New Year.... Now that that chapter in our life is over, we look towards the future with great optimism. We will always be grateful for everyone who helped Brandon. Now as we focus ahead towards a new life, we know that it can only get better for our family. Brandon has been thriving and we are so happy. Did the treatment make a huge difference? Maybe not a huge difference but it did help Brandon. He will never have perfect vision and we have accepted that. Over the next few years, we'll be able to understand more about what he can see and how we can help to make his life a productive one. He is able to navigate for the most part without a cane. In fact he does not use one outside of school. He is able to see steps where before he could not. For us that is a great improvement because it further helps him to navigate in his surroundings. The sky is the limit for him.

What's Next....We are currently trying to decide what is best for our family now. We are looking at relocating so John will be able to work closer to home without being gone for weeks at a time. We'll keep you informed on our decision!! Happy New Year!!

Brandon's update on Channel 13 News

2008-11-21T18:20:00.002-07:00

This past month has been CRAZY!! However we did manage to meet with Jennifer Brown from Channel 13 news to do an update. As always, she did a wonderful job! Here's the link: http://www.krdo.com/Global/story.asp?S=9378995

On another positive note, Brandon received a scholarship which will pay 90% for a CCTV. Our cost is $200. The new CCTV will allow Brandon to see printed books by zooming into the images. Hopefully his new learning tool will be in by Christmas!

Horses, Bulls & Rodeo Clowns

2008-10-04T18:32:00.009-06:00

Brandon & Nick with a fellow Kansan, LJ Geist. LJ is originally from Scott City, Kansas - like Brandon. He was the rodeo clown for the event. What a coincidence!! He's parents, who know Brandon's dad & his parents, were in town for the rodeo also. They had no idea the rodeo was being put on for Brandon!!

We took Brandon to a rodeo that was put together in his honor. The weather tried to hold up but at the end, it began to sprinkle. Brandon got to see a bull for the first time. He said "oohh that's big.....can I ride it?" He did get to ride a horse which made his day.

Brandon got to ride a horse!! Thanks for the ride Cody!!

A Beautiful Sunday in September

2008-09-28T13:37:00.016-06:00

Today John & I took the boys to Jill's Country Cafe to see Jill for the first time since coming home. At the silent auction, a lady had donated a jumper (day rental). Jill ended up with the winning bid so she decided to get the rental when Brandon returned from China. So here was the jumper, set up on the side of Jill's resturant for all the kids to come play one. The boys had a great time! After a little while, we were informed that our breakfast was ready. So the boys gave up the the jumper for bacon & eggs (although I'm sure if they had it their way they would've forgone the breakfast). After they ate, they decided it was time to hit the swings & slide which is located on the other side of the resturant. It was nice to just hang out with the boys & have "fun time". We went back into Jill's to tell everyone bye & Jill talked the boys into jumping some more - like they needed encouraged!! On the way home, the boys confiscated our cell phones so they could play with them. A little while later John & I heard Nick saying "Hello!". We turned around to find that Brandon had called Nick on the cell phone & they were talking to each other!! Good thing we have cell to cell free calls!! We've got a fly family reunion in our living room. Everytime I go in to watch TV, I feel like a carcass.

Photo's:

1st - Brandon & Nick enjoying some "jump time".

2nd - "Peak-a-boo Nick, I see you!!"

3rd - John & Brandon ~ Jill's in the background taking a customer's order. Thanks for breakfast Jill, it was great!!

4th & 5th - This is what I found when I turned around in the vehicle. The boys talking to each other - on the cell phones.

6th, 7th, 8th -
Brandon & Nick having a great time on the slide. Dad had to catch them because they would gain so much momentum, they would sail off the slide & land on their bums!! Nick learned that after the first go around.

"Catch Me Dad!!"
"WooHoooo!!

Nick: "ONE MORE TIME PLEEEEAASEE!!"

Dad: "Okay...one more time."

Nick: Catch me!!

9th - Nick & Brandon on their 2nd trip to the jumper

10th - Brandon hanging out in the living room - still playing with my cell phone. That explains why I always have a dead battery!!

Adjusting to Home Life

2008-09-25T15:24:00.007-06:00

We have been home 10 days and to be quite honest, it has been the best 10 days of my life!! Brandon's first eye Dr. appointment was on Monday. We had channel 13 news crew with us so they can update everyone on how Brandon's doing. Unfortunately it appears our Dr. has changed his opinion of stem cell therapy in China. He made a speech about how it couldn't possibly work but yet he said Brandon is "testing" better during the exam. He knew as well as everyone in the room that Brandon saw more during that exam than he did during the last one. So we took the Dr's speech like we do with every other critic - with a grain of salt. Everyone who has seen Brandon since returning has noticed changes in how he gets around and how he's noticing more of his surroundings. I didn't expect the Dr. to saw "It's a miracle!" however I did expect him to be honest about his findings. At the end, he made a statement that made me understand why he wasn't being straight with us. He told us that he had been telling his other patients not to go to China & he didn't want the news story to say that he saw improvements with Brandon because everyone would be calling him asking why they shouldn't try it. I understand how hard it is to grasp the fact that this treatment could possibly help when every other medical professional has said "IMPOSSIBLE". I get that - really. But we went over there knowing that this may not help. We understood the risks and we accepted whatever the outcome. Never did we imagine that Brandon would come home seeing the alphabet in print. Anyway Brandon had another appointment with the school's eye Dr on Wednesday. The first Dr. had promised to call the 2nd Dr to let him know of his findings however when we got to Wednesday's appointment, we learned that the 1st Dr. had not called Dr #2. I was quite upset because we were promised that he would call him. I'm wondering if a Doctor change is in order. Not because he doesn't believe in stem cell therapy - that's his opinion. But because we paid $81.00 Monday for a speech on how it can't possibly work & an assessment that was calculated because he was concerned of what his other patients would say. Then he decided not to call the school's Dr. after he said he would. Anyway Dr. #2 said that adding print to Brandon's lessons would benefit him and to allow him to view things in his comfort zone (4 inches away). Brandon has been used to seeing things up close and we had originally been told to make him use his sight by making him look at objects further away. The 2nd Dr.'s input was very helpful & I'm happy with his assessment. He wasn't there to see how far Brandon can see but to help us on how Brandon should be taught. He said that there is a program available to help students obtain equipment that can help with their education. We are in need of a CCTV and that's what we're going to ask for. They won't pay for all of it but they may pay for most of the total cost. Anything to help Brandon better himself! Anyway channel 13 will come visit Brandon at his school Tuesday morning so Brandon's excited about that. He has a secret crush on Jennifer (the morning news anchor). It's cute really because he's always asking when he can talk to her. Then when he sees her, he doesn't say too much. They should be airing his story either next week or the following week - I'll keep everyone posted! I apologize for not answering every one's emails this week - I'm down with a cold that refuses to go away. Hopefully in the next day or two, I can finish the emails. Sorry Jamie for not getting those pictures off to you yet - I promise I will soon! Tell Spencer "Hi" for me - I miss him! Photo's: 1st - Brandon's greatest love (besides music) is swimming. 2nd - Nick & I enjoying the day together. 3rd - Brandon playing in the water. Grandpa Preston had to work hard to get him out!!

Getting Settled In

2008-09-19T10:25:00.016-06:00

We've been home for 3 1/2 days now and it hardly seems possible. At times it feels like we've just gotten here but then at other times, China seems like a distant memory. I just can't get over how different China is compared to the US. It really does feel like another world when you're over there. Anyway after being plagued with internet problems, I just now got it to work again. I have wonderful updates to report but first....our trip home. Jack took us to the airport and helped get our luggage checked in. Unfortunately 2 suitcases were overweight :( one was 70 lbs & the other was 56 lbs. I ended up having to pay 60 USD for it. After that was taken care of, we went through security and had just settled in the waiting room for our flight when 2 cops with rifles came up to me and said that I needed to come with them. All I could think of was "Oh my God, what's going on? I'm going to jail & I don't even know why! I'm never going home!!" Yeah I know, over dramatic but that would've been just my luck! Anyway Brandon and I were escorted back through security where they had one of my suitcases on the table. They said that they wanted to search it. So I opened it up & they took my DVD's. All they wanted was to look through my DVD collection!! Once they realized that my DVD's didn't contain anything horrible, they allowed me to zip everything back up & I was free to go back through security to the waiting room. Finally after what seemed like a decade, we were able to board. 30 minutes after the plane was suppose to leave, we were still at the terminal. I began to smell smoke which wasn't the most comforting smell when you're about to be 37,000 feet up in the air. I was trying to decide whether to demand an explaination or to jump sail when the plane started to back out to the runway. I seriously doubt if I had ever been more afraid than I was at that moment. But obviously all went well. We landed in Seoul, Korea where we had a short 2 hours to wait for our connecting flight. It was nice to finally board because I knew that the next time our feet hit the ground, it would be in America. The plane we were on was really nice however Brandon & I was next to the window & an Asian guy had the aisle seat. Knowing that we were trapped for 11 1/2 hours made us want to go to the bathroom even more. Each seat had a mini TV so I was able to watch movies while Brandon slept. We had stayed up most of the night Sunday night in hopes that we would be able to sleep on the plane from Seoul, Korea to Los Angeles. Brandon sleep most of the trip but I was only able to sleep for an hour and a half. We crossed the pacific ocean at night so we didn't have much of a view until morning. I opened the shade just as the light was starting to show over the horizon. It was absolutely beautiful! As dawn broke, they brought out breakfast. They asked Brandon & I what we wanted for breakfast - omlette or pumpkin porridge. Brandon had been begging for eggs the whole time we were in China so I said omlette. I cut up Brandon's omlette and gave him the first bite. He started gagging & spit it out saying that it was "so gross". Curiousity got the best of me so I gave it a try. It was fish! A salmon & egg omlette! How could anyone eat something so disgusting?! I mean I like salmon but not chopped up in eggs for breakfast! Poor Brandon was so hungry! We also had fruit & bread so I gave him everything from my plate that he would eat. Luckily we only had a few more hours before we would have American food. After breakfast, Brandon wanted to look outside - something he had never asked to do. So I sat him on my lap and we looked out the window. Suddenly Brandon said "Ohh what's that?" After narrowing down the options, I discovered he was looking at the wing of the plane! I couldn't believe it! I started crying which I'm sure the other passengers thought was odd but I didn't care. That was one thing we were hoping for. For Brandon to see the wing of the plane on the way home. I was so excited! I wanted to start making phone calls to tell everyone but of course we were still up in the air so I had to wait. We finally landed in LA at 3:40 pm (Moutain time). We were greeted by an American who could speak English!! I know that statment sounds odd but trust me. After not being able to communicate very well for 5 weeks, it feel so great to have an English speaking American greet you at the plane exit. She helped us get our luggage through customs to the next drop off and made sure we got to the United terminal. We tried to get on an earily flight but we just didn't made it in time. So we went to Route 66 for lunch. Our first real American food in 38 days. Brandon had chicken tenders & fries and I had a hamburger with fries. Add two cokes and the total came to $38.00 USD. The bill was a bit surprising but it was worth every penny! I didn't think it tasted the best & I started to get concerned. Maybe my taste buds were ruined!! I had heard horror stories of people coming back from China and not liking the foods that they used to eat. But it was refreshing to be eating something that was familiar. After a 5 hour stay in LA, we boarded the last plane. Destination: HOME!! That plane ride was only 2 hours but it seemed a lot longer. When I saw the lights of Colorado Springs, I knew that our journey had finally ended. After flying over 6,000 miles, we had made it.... we were home. John & Nick greeted us at the airport. I swear Nick had grown 6 inches in 2 weeks! I was so happy to see them again! After getting our suitcases into the Tahoe, I insisted on going to Taco Bell. Not because I was hungry but because I had thought of nothing else since arriving in China. I promised Brandon & myself that we would go to Taco Bell as soon as we left the airport. So at midnight we pulled into the Taco Bell drive thru and ordered a burrito for myself & cinnamon twists for Brandon. I took one bite and my original thoughts of having ruined taste buds came back. It didn't taste anything like I remembered. John ordered a burrito as well and thankfully he agreed that it didn't taste too good. By 2 am, I was sound asleep in my own bed. Oh how good it felt to pull the covers up to my chin and go to sleep in my comfy bed. Tuesday morning I woke up at 7 AM :( After 5 hours of sleep, I could sleep no longer. Suffering from extreme jet lag, Tuesday seemed to blur into Wednesday. Brandon saw the neurologist Tuesday morning and he put all of our concerns to rest. He didn't see much of the brain damage that the Dr's had seem in China. He did say that the cranial pressure is somewhat concerning and that we may want to have his tested. We have decided to wait and see how his headaches are. If he continues to suffer from them, we'll have him tested. Anyway as we were talking to the Dr, Brandon got down and started playing with the toys in the toy bin. As much as John & I tried to concentrate on what the Dr was saying, all of our attention was focused on Brandon playing like a normal child. Over the past two days we have noticed subtle changes with Brandon. He spent Tuesday & Wednesday outside playing with Nick. Something he had never done much of. I caught them outside in the driveway loading rocks into their dump trucks. How cool was that?! Brandon had never done that before! On Thursday Brandon started 3rd grade. We talked to the principal who is an amazing guy. Mr Tutt has been behind us from the very beginning so for him to see the changes in Brandon himself was great. Brandon showed off his new tricks - showing Mr. Tutt how good he is at the flash cards. By the time we finished talking to Mr. Tutt, it was time for lunch. So Brandon, Mr. Tutt, John & I walked to the cafateria. Brandon walked ahead of us (without his cane). As we walked past the vehicles in the parking lot, Brandon said "Ohh what's that?" I asked him "You tell me, what is that?" He said "a motorcycle". Of course he was right. Mr. Tutt laughed. As we were about to step down on the curb, I held my breath. I was really hoping he would see the step. He looked down and took the step like he had been doing it all of his life. again Mr. Tutt was impressed. On the way back from lunch, Brandon came up to the step, turned around, and said "Be careful Mom, there's a step coming". How amazing is that?! We see the eye Dr. Monday morning. I'm excited to see what he has to say. I'll keep everyone posted! I just want to say Thank You to all who has stood by us during this journey. It has been amazing! Photo's: 1st - The Qingdao, China Airport. 2nd - Our last view of the Qingdao Aiport. Adios China!! 3rd - Seoul, Korea has several little islands around the shoreline. How beautiful is that! I actually thought we were going to land on water because we barely cleared the beach before we touched down. 4th - Incheon Internation Airport in Seoul, Korea 5th - Brandon hanging out in the airport in Seoul before we boarded the plane to America. 6th - Dawn breaks over the Pacific Ocean. What an amazing sight!! 7th - Breakfast! Our salmon & egg omlette 8th - Brandon smiling after seeing the wing of the airplane FOR THE FIRST TIME!! 9th - Flying over Los Angeles, California prior to landing at LAX. What a view!! 10th - The LA Roadhouse Route 66. Our first American meal in 38 days!!

We're Home!!

2008-09-17T17:54:00.002-06:00

Hi everyone, sorry it took me so long to update. When I got home, I went to hook up my laptop to the internet and found that my old settings didn't work. Since I was / am experiencing severe jet lag, I just left it alone until now. Anyway we landed in Colorado Springs at 10:58 pm Monday night (12:58 Tuesday afternoon China's time). We had a very long & uneventful flight home. Well not quite uneventful. As we were about to hit the California coast, Brandon looked out of the window & saw the airplane wing....for the first time. He said "ohh what's that?" After narrowing it down, I realized he was looking at the wing. I was so excited!! I will post pictures of our return trip and go into details tonight. I just wanted to let everyone know that we're home safe & sound - and very glad to be here!!

Saying Goodbye to China

2008-09-14T21:56:00.002-06:00

Well the time has come to say goodbye. I never thought this day would come but finally our time here is over. We are so excited to be heading home!! We leave the hospital in less than an hour so I wanted to update the blog before I packed my computer away. We cannot wait to see everyone when we get home!! Brandon is unpatiently waiting - he's worse than I am!! So goodbye for now - I'll update the blog as soon as I get home to let everyone know we arrived safely. Talk to you soon......from home!!

Last Night in China

2008-09-14T06:34:00.009-06:00

Our last full day here has come to an end. All day today I felt a little off. I was sad in a way to leave all these wonderful people (Adele, patients & some staff) but I know that I should've been happy. It was just a weird feeling. Our life for the last 37 days has been full of adventure, boredom, happiness, tears, laughter, disgust, frustration.....but we have never regretted coming here. People ask "Are you glad you came?" Absolutely! We came here and did what we set out to do.... Improve Brandon's sight. We are also leaving here with newly formed friendships from all over the world which is an added bonus. All the patients & families here have one thing in common - stem cell therapy. It's that common bond that has made us almost like family here. It doesn't matter where you're from or what your social background is, we all came here with hope for a brighter future. We leave tomorrow with not only that but ever lasting bonds with others here with the same dream. It's hard to say goodbye to some of them because in reality, we may never see each other again. I think that's why it's so bitter sweet for us. Brandon asked if we could take Adele home with us. I certainly wish we could. She's an amazing girl with a bright future. I just hope her future doesn't include staying here. We are hoping to return next year for another round of treatments & hopefully we'll see her again. Today Adele went with us to the RT Mart for the final time. I had to stock up on some candy that I've become hopelessly addicted to. We also stopped at Brandon's favorite place....KFC. It was nice to get out after being coped up in the hospital for the last few days. I regret not going to some places that I had planned on going but that's ok. We saw more than I expected and we did have quite an adventure. Photo's: 1st - Brandon & Adele outside of KFC & the RT Mart. 2nd - Brandon's home away from home - KFC. 3rd - We went to this market today about 30 minute drive from the hospital. On the surface all looked nice however they have these narrow alley ways that are littered with trash & packed full of people. They were cooking in the alley so this horrible stench from the street vendors was hard to ignore. One vendor was selling meat on a stick that looked similar to a hot dog but I guarantee it wasn't a hot dog! Brandon said "ohh what's that?" Through clenched teeth (because of the smell) all I could say is "Keep moving!!" Like the meat didn't smell like any meat I have ever had or seen. I wish I had taken a picture of it but all I could think of was to get out of the area as quickly as possible. 4th - Another view of the market. Pictures 3 & 4 were taken in the neat area of the market.

Going Away Party - Leaving China in 42 Hours!!

2008-09-13T03:27:00.007-06:00

Yesterday Dr. Bing gave Brandon a set of flash cards that had various pictures on them. Car, ship, plane, helicopter, watermelon, corn, green pepper, apple, tomato, potato, water gun, rattle, cup, bowl...well you get the point. Anyway there is 48 different pictures and within 4 hours (including breaks), Brandon was able to tell us what each one was - 2 feet away - except tomato & apple (They look identical with the exception of the stem). I brought the Dr back in last night during Brandon's "lying down time" to show him what Brandon could do. After going through them with him, Dr. Bing grabbed my shoulders & hugged me then tried to hug Brandon but he wasn't going for any of that. He told Brandon "Thank you for making my day... this is very good news". I thought he was going to cry but he did keep his composure. He said that Brandon has a very good chance of improving more over the next several months. Many people have told me that the Dr's are just in it for the money. This may be true for some Dr's but not Dr. Bing. He is an amazing Dr who truly cares about what he's doing. He WANTS to help people, he WANTS to see people improve - and we can't thank him enough for everything he has done. Last night we were informed that the Dr. visiting from another city lets his patients up after 4 hours of lying down. So instead of the normal 6 hours, Brandon was allowed up after 4 hours. He was happy about that. Especially since there was a party going on out in the lobby. An hour after it started, Brandon & I were able to go out and take part in the festivities. We took pictures, talked to other patients & ate. They had the coffee tables COVERED with fruit, cake, moon pies, & juice. Brandon ate watermelon & cake to celebrate his last treatment. We retired early since he is suppose to take it easy for 48 hours after treatment. Around 11pm, Brandon started suffering a headache. I gave him Tylenol but it wasn't helping. I went to the Dr's office across the hall & asked Dr. Bing for medicine. The last time Brandon had a headache, they gave him a capsule which we dissolved in water. 5 minutes later, the Dr. came back with a capsule. Today he has been taking it easy & right now he's in bed with another headache. I think he partied too much last night instead of resting. Another day is about to end - 2 days left!! We stayed up late last night & slept until nearly 2pm today. Hopefully it will help in readjusting to US time when we get home.........IN 2 DAYS!!! Photo's: 1st - Brandon enjoying the party in the lobby. See all the food on the table? They had a bowl of limes....not sure what they were for. 2nd - Brandon is flirtin' with the nurses & making his remaining time here count!!

Final Treament Is Complete!! 3 Days Until We're Home!!

2008-09-12T01:25:00.017-06:00

Last night 15 of us (patients & their families) went to the Sunkin Hua Kun Hotel - aka the International Buffet - for dinner. It was actually better than the last time we went. (well except for the duck heads & tongue from some animal - not sure what type of animal donated their tongue for the menu). It was pretty funny because I sat in front of a patient who likes to be adventurous when it comes to food. As I sat there eating with Brandon, I tried my best to avoid looking a the other patient's plate of sea shells & tendons. They did teach me how to use chop sticks so "Thank You" - you know who you are!! The reason I use the terms "they, the patient, or them" is because not everyone likes to be acknowledged on someone else's website. So if I haven't asked their permission - I don't mention names. Today was Brandon's final treatment!! YEAH!! He is currently beginning his 2nd hour of lying in bed - 4 hours to go! The Dr. met us in the elevator as we were coming back up to the room & said that everything was fine. In fact his intracranial pressure was at the lowest we had seen it before - 70 which is a normal!! I'm not sure why we have seen the pressure drop from high to normal but we're happy. It certainly makes recovery go a lot smoother with less complications. Brandon is so happy that this was the last treatment. He has gotten tired of feeling like a pin cushion - being poked & prodded. But he has said that his eyes are working better so he's glad he came to China. I think we are all happy to have had the opportunity to come here. I may have complained a lot but not once have I ever regretted coming here. I'm adding several pictures that I took last night & today since this was the last treatment. During the previous treatments, I've sorta slacked in the picture taking department. I have just been informed that the staff is throwing us a party tonight at 6:00 pm. Apparently since there are three families that are leaving Monday & Tuesday, they want to have a going away party. That's very nice of them - it will also give Brandon & I something to do to pass the time. I have asked them if I can wheel Brandon out into the lobby for the party since he's unable to get up until 9:00 pm (providing he is feeling well). They said that we could probably do that. Well we are almost packed up. Tonight I will pack most of our clothes up & leave only the clothes we'll need for this weekend & Monday. I'm done doing laundry in China! The clothes don't dry for a few days & by the time they do dry, they smell funky. When we get home, I'll be washing ALL the clothes up so we can hopefully get the smell of China out of them. So we're down to wearing our cleanest dirty clothes until we get home! Photo's: 1st - Some of the other patients & families linger after dinner. I had forgotten the card that shows the hospital name & address in Chinese back in the room so I had to wait & catch a cab back to the hospital with another family. This was the first time I had ever forgotten the card - thankfully there was still other people that DID have theirs or Brandon & I would never had gotten back to the hospital! 2nd - Brandon standing in the lobby of the Sunkin Hua Kun Hotel last night after dinner. It's a really nice hotel!! 3rd - Brandon today making faces as we wait for them to take him downstairs. He was being silly! 4th - 2:15 pm China's time - Brandon is whisked away by a nurse an the interpreter Wendy. Time for treatment!! 5th - Brandon is being loaded on the elevator to be taken down to the 4th floor where the spinal treatments are done on kids. The adults have their spinal treatments on the 9th floor. 6th - Brandon waves to the camera as we go down the hall on the 4th floor. OR room here we come!! 7th - At 2:25 Brandon is fast asleep after he receives a dose of medicine to put him to sleep. They put two different medicines into his IV using a syringe. It only takes a minute or so for him to go to sleep. After he is fast asleep, they move him into the gurney used for treatment. 8th - Brandon is on the gurney & is whisked away to the operating room. That's the last time I see him before the treatment starts. I am sent to the waiting room to do just that - wait. 35 minutes seem like hours when your child is in the operating room. Only when he is awake do I get an update & that's to tell me that I can see him again - back in the same room that he received the medicine to put him to sleep. 9th - The Operating Room. When you first walk in, they ask to to wait there - do not cross over the line because you can contaminate to OR. However nurses & Dr's can cross over the line & go back (apparently there's a difference). So they take Brandon to the line & give him the medicine to put him to sleep. I have to lean over the line just to hold Brandon's hand as he falls asleep. 10th - The dreaded waiting room. Actually this is a really nice waiting room. The families of patients who receive stem cell treatments wait in this private room while the Chinese families all have to wait in a little room filled with hard metal chairs across from the operating room. They just recently granted us use of this room so the families can be more comfortable. More often than not, I sit at the table & try to read a book. It's hard though since all I can do is worry about how Brandon is. I'm so glad this is over with!! The waiting room is actually a meeting room where Dr's go to converge. They have a big flat panel TV, a projector & a computer in the room. I can understand why they would hesitate to let us use the room to wait. In the background on the wall is a Chinese saying. From what I understand, it means to always think of the patient with understanding & to give the best care possible. 11th - At exactly 3:00 pm Brandon is back in the room just inside of the operating room after receiving his last spinal stem cell treatment. He is fully awake and in a great mood! The shelf in the background holds several pairs of sandals. When people go past the line, they have to put on the sandals (I guess so you don't contaminate the floor?) Right next door to the OR is the door that you enter to go into the waiting room. As soon as you walk into the hallway leading to the waiting room, there is the same type of shelf with sandals. They usually have plastic bags that they have you place over your feet. Today I wasn't quite so lucky. With no bags, I was forced to use the sandals. They're comfortable but I'm sure many people have used those same pair since washing them. I have a problem using sandals that are community property & where someone else's sweaty feet have been. But if it means sitting in a comfortable waiting room instead of the common waiting room, then I'll get over my phobia -Afterall this was the last time!!

7th Anniversary of the World Trade Center Attack

2008-09-11T01:44:00.005-06:00

As we remember what our country went through 7 years ago today, I can't help but be thankful for being an American. I remember after the attack, you couldn't find a single American flag in stores - they had all be purchased and proudly displayed uniting our country during a difficult time. Today as we went to Jimo, I noticed that very few China flags are displayed. They do have small ones but they don't have many large (flag pole) sized - not like America. I hope our children will understand how lucky they are to have been born in the USA. It was very bittersweet going into town. Today's journey marked our last outing here in China. I have fallen in love with Jimo but I believe a person could go bankrupt in there if they really tried hard enough. It's not the shopping I love but the people in those little booths. They work hard every day to sell the goods that they make just to feed their families. They are so friendly and kind and try so hard to please you. They just make you appreciate your life even more. Brandon was even a bit sad when we left Jimo for the last time. We stopped at KFC (Brandon's favorite place) before coming back to the hospital. Brandon asked if we could go to KFC when we got home. I told him that I doubt if we would ever eat KFC again. 4 days until we come home!! We are so excited!!! Brandon will have his last treatment tomorrow so hopefully the next couple of days will go by fast. He has learned all of his alphabet & numbers 1-9 (the numbers he learned today!!). I'm so proud of him! Photo's: 1st - Brandon and I in from of a fountain in the courtyard behind Jimo. Jimo is a shopaholics dream! 2nd - Brandon at the nurse's station last night. He asked if he could wear her hat - funny huh!

A - Z and 5 DAYS LEFT!!

2008-09-10T00:04:00.005-06:00

Brandon has done it! He has learned the whole alphabet in exactly one week IN PRINT! X & Y were a bit tough but he counts the "legs" to determine whether it is an X or a Y. Today we woke up & got him fed before the 6 hour cut off (no food or water 6 hours prior to treatment). Then he went back to sleep. The Dr's came in soon afterwards but didn't want to wake him up. They said to let him sleep so they left. LESS THAN 2 minutes later, 2 nurses came in to put his IV in. I asked them to come back later since the Dr's said to let him sleep. They said "no, now". So at 9:15 am this morning, they did his IV. 45 minutes later, the interpreter came in and said that the treatment has been cancelled today because the flight was cancelled. The stem cells are flown in the day of the treatment in insure that they are as "fresh" as they can be. They said that the treatment will be done on Friday instead. Of course I was a bit concerned because we head home on Monday & from what we have always been told, you must wait 5 days after treatment to leave. I told them that we ARE LEAVING on Monday - regardless. They said that since his last spinal was fine that this one should be noneventful as well therefore it would be ok to leave on Monday as scheduled. We are so ready to go home that nothing is going to keep us here!! I told John that we'd run away if they attempt to keep us longer. With that being said, I told them to take his IV out and Friday's IV won't be given until closer to treatment time. It is crazy to give a kid an IV 6 hours before treatment. Especially since they don't start using the IV until an hour prior to treatment. Brandon being tortured today could've been prevented if they hadn't been in a rush. I had promised Brandon that this was the last IV & I unintentionally lied to him. Last night I couldn't help myself. I started packing. I tried to limit myself & pack only the stuff I wouldn't need here. It made Brandon & I feel so good to begin the process of packing. It made the impending trip home seem a bit closer. Brandon & I have gotten so used to being by ourselves. We aren't trying to be standoffish to the other patients, we're just so homesick and don't feel like hanging out in the lobby. Yesterday I took Brandon to KFC and that's the only time we stepped out of our room the entire day. Today we went to the nurses station to get the IV out and that's been it. John has been telling me to put a DVD in & watch a movie to make the time go by faster. I can't even get myself to do that. I have turned the TV on twice since John left 10 days ago. He convinced me to try a movie twice but each time, I didn't watch it. I feel completely different since everyone left on the 1st. The only thing on our minds is the prospect of being home soon. All Brandon talks about is leaving China & going home. In the middle of the night, I hear him talking in his sleep. Usually he just says "I wanna go home". We wander through the process of getting up each day, eating meals, listening to music just to end the silence, practicing letters and chatting with family back home. And of course staring at the clock, begging time to move faster. Now I know what the other patients feel like the last week they're here. It really does go on forever!!

We left Home Exactly 1 Month Ago Today - 1 Week Left!!

2008-09-08T04:21:00.004-06:00

Today was another lazy day. We saw the Dr's at 9:00 am and then we had the rest of the day off. Adele came to see us at noon which was really nice. We have missed her & we're going to miss her after we leave!! She brought us something that is similar to a waffle cone except it was rolled up & had little seeds in it. It was actually pretty good. After she left, Brandon wanted to go to the RT Mart and buy some chips & raisins. So off to the market we went. We bought more cucumbers for him & I found a block of imported Land O'Lakes American cheese. I was happy!! We left America exactly one month ago today. It really doesn't seem that long ago but then in a way it does. We have gotten used to China and all of their funky ways but I wouldn't want to live here. We come home a week from today. Brandon is so excited to be on our last week here. He woke up this morning & instantly remembered that today marked the 1 week until D-Day. Photo: Brandon talks to his Dad on Skype. He can tell me where John's nose, eyes & mouth are on the online video. Although Skype has been great, we can't wait to see everyone in person!!

Lazy Day - 8 days to go!

2008-09-07T00:50:00.011-06:00

It's Sunday afternoon here and we're being lazy today. On the weekends nothing really goes on around here. Brandon & I slept until 12:30 - something that we haven't done since we got here. It was nice to actually sleep in and pretend that we're back home :) Yesterday we got up early & went into town with several other patients. We started our day at a Temple downtown. It wasn't quite as peaceful as the one in the mountain nor was it as scenic but it was nice to see. Next we stopped at the boardwalk. Almost everyone else wanted to eat Chinese food. But Brandon & I couldn't stomach the thought of eating it so we skipped it & went to the beach. Brandon was able to play in the water which he loved. I took off his clothes & left him in his boxers since we still had more stops to make. At first I wasn't sure if it was ok but then I noticed that most of the other kids were completely naked. He played with another little boy who could speak some English. We kept getting surrounded by people wanting to take pictures of Brandon. I bought a bottle of water so I could wash the sand off of Brandon's feet & legs. As we sat down to get him cleaned up, I noticed a circle had been formed around us of people wanting to see him. It was a bit Awhile later we walked down the boardwalk & took photo's. It was nice to watch the Navy ships off in the distance. Brandon enjoyed looking at the water from the boardwalk (about 6 ft below). Later we went to Jimo and to a DVD store. The DVD store is so funny. We walk in & ask them that we want to see the English movies. They tell you to be quiet as they lead to to the back. Suddenly this shelf starts to move reveiling a secret room full of movies. I'm assuming they are copies which would explain the secrecy. After stopping at KFC for dinner, we arrived back to the "house" at 7:30 completely exhausted but grateful that we were able to do something that made the day go by quickly. Photo's: 1st - Brandon & I at the Temple. There was a long walkway that lead to different buildings, each containing a gold Buddha with gifts of fruit and other things around it. People would buy incense and light several at a time in front of the Buddha. They would then hold the incense up to their forehead as they prayed. After prayer, they would throw the incense into a metal "thingy" as shown in photo #5. 2nd - Brandon & I in front of the huge bell. While there, the bell began to ring and we saw several monks head toward a large building that had another gold buddha in it. From what I understood, it was time for prayer. Anyway inside of the bell house is a 3ft long log suspended in air by chains and covered in decorations. They strike the bell with the swinging log which of course causes the bell to ring. 3rd - Brandon & I in front of the oddest little building. It is seven stories high but each floor is extremely small. I didn't see any signs that gave an indication as to what it was. I thought it was an interesting building though. 4th - In front of each building, there is a metal box that people place incense in after praying over them (like the person in the background). It was really smoky around the boxes!! On the left 0ur favorite driver looks on. 5th - When the bell rang, the monks went into this building which is the largest building there at the Temple. We saw several banners announcing the 2008 Olympics which I thought was odd at a Buddhist Temple. 6th - One of the golden buddha's which is found in every building. I didn't realize that we weren't suppose to take photo's of the buddha's until the driver pointed out a sign saying so....oops! 6th - Brandon at the beach. He had such a good time playing in the water. He accidentally got some water in his mouth & he said "EWW that's nasty water!!" I had to explain to him that it was salt water and that lots of fish live in there. In the background there was several Navy ships just hanging around. Also above Brandon's left shoulder, there was a man in a row boat just floating around us. He would come up as close to the shoreline as possible then go back out. I never did see the purpose of it but he seemed to be having a good time. Brandon got a little sunburned out there. Every few minutes someone would come by and take his picture. Can you see the island in the background??

Last IV Stem Cell Treatment! One Spinal Treatment To Go!

2008-09-05T07:56:00.005-06:00

Brandon had an IV stem cell treatment today. Everything went well & he's doing great. He's very hyper today - jumping around and running up and down the corridor. This morning at 8 am the nurses came knocking on the door wanting to start the IV. I asked them to please come back later since he still had 6 hours before the treatment started. There was no sense in waking him up so early just to torture him. 10 MINUTES later they came back. I told them "No, LATER". So they came back at 10 am. I gave in and woke Brandon up. At 2 pm we went to the IV room and started treatment. I noticed that the stem cells weren't really yellow like usual. I asked the nurse why it was so pale in color. They told me that they would have a Dr. come in and talk to me about it. About 30 minutes after treatment, the Dr came in and explained to me that when they are culturing the stem cells, they try to remove as many red blood cells as possible but they are not always able to. So the more yellow the stem cell bag, the more red blood cells. Apparently you do not want it to be so yellow. So we learned something new today. Brandon is up to the letter R. I'm sure if I pushed him, he could've gotten through the whole alphabet by now however today I had a hard time getting him to sit still. We worked on letters for about 20 minutes & then he was done with it. Maybe this weekend will be calmer for him. If not then I know on Wednesday when he's laying down for 6 hours, he won't be able to run from it!! Tomorrow Brandon will get his wish. He wants to go to the beach and see the water. So we're going to spend the day out. After awhile the walls start closing in on you & you begin to feel like a caged animal. We went for a walk tonight but Brandon didn't like it (he just hates to walk). He kept begging me to get a taxi to take him back to the hospital :) 10 days until we come home!!

Countdown begins - 12 days until we come home!!

2008-09-03T03:35:00.009-06:00

Today I reviewed A - L with Brandon hoping that he would remember them from yesterday. He did!! He gets the capital letters "J" & "I" confused but that's because he doesn't look for the curl at the bottom of J before telling me what it is. So we worked on that for awhile. We are now at the letter "Q" so he's learned 5 more letters today. I keep reviewing through the first 17 letters of the alphabet with him so he won't forget. Also we discovered he can see the letters at 28 point if he gets up close to the letters. That is truly amazing since you can get large print books at 28 point - even up to 48 point. Guess what this means..... We reached our goal. Brandon WILL be able to read large print (once he learns how to read actual words instead of braille). Brandon has a chance to improve even more over the course of a year so we're not done! I truly believe the stem cell treatment will exceed our goal of large print. We are so happy & words cannot express how grateful we are that our community helped Brandon. We know that we couldn't have gotten here without the support from friends, family & people we have never met. From the bottom of our hearts.....Thank you. Thank you for giving Brandon this new life. The sky is the limit for him! Photo's: Brandon is working on his letters! The first photo shows a 100 pt capital "D". The 2nd shows a 300 pt capital "C". Both of which he can see really well at the distance that he's at from the computer - YEAH BRANDON!!

Wanna hear some Good news or Great news??

2008-09-01T23:53:00.006-06:00

They're home!! John, Mom, Courtney & Nick arrived a few hours ago. They are tired but safe & happy to be home. They immediately started in on the laundry to try & get the stench of China off their clothes. Brandon & I will probably have to throw our clothes away - don't think the smell will ever come off them! The dog ate our remote from our television. Several souvenirs that we had bought for our family & friends back home broke. I really think the airlines took a hammer to their suitcases because I had packaged everything up as good as I possibly could. Oh well lesson #7,098,547,362 - never buy breakables & put them in the checked baggage. Now for some exciting news. Today Brandon & I were looking on the computer at pictures when he started pointing at each person & telling me who they are. He knew what we looked like before but only if he got in our faces & then on some days he couldn't tell John & I apart. Anyway these pictures showed each person several feet away from the camera. I was pretty excited about that so I decided to start working on flash cards. Since I don't have flash cards, I started typing letters on Microsoft Word using 300 pt. (just to start teaching Brandon the letters). I started with the letter A and finished with the letter L. Brandon quickly learned those letters & could tell me what each one was. I started to wonder if maybe he was taught this in school so I threw in the letter N and he said "ooh what's that one?" I know for a fact that he didn't know this before nor was he able to see the letters before treatment. Over the next few days I'll slowly introduce more of the alphabet to him. I brought the Dr. in so he could see it. The Dr. was so excited and said "I can't wait until the next spinal!" He said that he would ask his wife & see if they had any flash card of animals so we could work with Brandon on that. We are so happy to see results like this. After getting the MRI results we really weren't sure what if any results we would get from it. But now we're back on track - we're getting results & it will only continue to get better!! We miss our friends & family - the ones we left back home & the ones who just left us yesterday. But now we have renewed energy & we know that we can make it though the next 13 days. We probably won't eat another chicken or pizza for the rest of our lives but my son has more sight and that's all that matters!

They're Off

2008-09-01T03:41:00.004-06:00

Well John, Mom, Courtney & Nick left Qingdao at 2:50 pm China's time (12:50 am Mountain Time - 1:50 am Central Time). Currently they are in Seoul, Korea awaiting their plane for LA. It was so hard to say goodbye to them. They have been here through the good times & the bad times. Now it's just Brandon & I. Brandon is taking it hard. He cried for quite awhile after they left the hospital. He had a spinal stem cell treatment today 50 minutes after everyone had left to go to the airport. Everything went fine and right now he's lying flat in bed. He's not too happy since he's unable to eat for another hour & 15 minutes. So far this was the best spinal he's had. He didn't have any allergic reactions & so far no signs of headache, backache, or fever. His cranial pressure was also down to 200 - YEAHH!! Still a little high but better than before! That could be why Brandon's feeling good right now compared to last time. We'll keep you posted on how Brandon's doing & also when John, Mom & the kids arrive home.

Saturday's trip

2008-09-01T01:27:00.006-06:00

As our last trip outside of the hospital as a family, we chose to go to the mountains. Seems fitting since we live so close to Pike's Peak. We had our favorite driver stop at KFC so we could have lunch on our way up there. Now usually our driver takes it easy on us. He's our favorite driver because he doesn't try to kill us just to get ahead of another vehicle. However I believe he was having an off day because we all held on for dear life! As we headed up the side of the mountain, the ocean was directly below us on the right side. There was a 2 1/2 ft high barrier to "prevent" cars from falling off the road into the ocean however I don't think it would've been much help if we had hit it. Anyway as mentioned previously speed limits are a mere suggestion around here & these people like to see who can be the fastest. As we sped up the side of that mountain on a narrow 2 lane road, all I could think of was what would we die from - the accident itself or drowning in the sea. We finally arrived to our destination - an old Buddist Temple. A tourist guide offered to explain it's history for 30 RMB's. I figured it would be nice to learn about the temple so we agreed to hire him to take us around. We soon realized that his English really isn't that great and we didn't learn to much from him however just being there was an amazing experience. The grounds consisted of several old buildings and from what little we did learn from the tourist guide, the King lived in one building while his many wives lived in one across the courtyard. It was so peaceful & I'm happy that we were able to see it. When we left the Temple, the ocean was right across the road. As we headed towards the sea, we became surrounded by souvenir vendor's. The driver tried to keep them away from us but they were relentless. Unfortunately we weren't able to enjoy the view because the vendor's kept sticking things in front of our faces so we headed to the van as quickly as we could. They were still trying to sell us stuff as we were loading into the van! The driver was so funny though - he yelled at them to get away but since they didn't he got in the van and floored it. All we could do was hold onto the kids and the handles. Since wearing seat belts are not required here, the seat belts are all covered by seat covers. Nick hit the floor a couple of times because the driver would slam on his breaks & we couldn't grab him fast enough. After leaving the Temple, we headed back though the mountain. Another van tried to pass us and our driver sped up. I told him "No rush!" and he just laughed. On the way to the Temple, I had noticed a nice beach that had relatively no people there so on the way back, we asked the driver to pull over so we could let the kids play for awhile. We took our shoes off & played on the beach for awhile. Brandon loved it! He would laugh every time a wave hit his legs. I'm so glad Brandon had a great time. I mean the hospital isn't bad but it does get boring and it almost becomes necessary to just get out. In the last 3 weeks we were out 3 times as a family. With the whole family here, it made this trip a lot more bearable. We were able to experience this together and we're grateful. THANK YOU RONNIE for making this possible. Without your help, half of us would've had to stay home. We are so happy that we were able to be together for as long as we were. Photo's: 1st - Brandon playing on the beach. 2nd - All of us enjoying the time together on the beach - Worry free!! 3rd - Courtney playing in the water. 4th - A nice quiet walk through the grounds at the Temple (you could almost imagine what it must've been like back in the day) 5th - John at the Buddist Temple 6th - More of the grounds at the Temple. You walk through this door and that's the view you get - breathtaking! 7th - We stopped at a landmark on our way to the Temple to see a waterfall. Across the street there is an amazing view of the sea and these huge rocks. 8th - Only John, Nick & I chose to get out of the van to see the waterfall & pose in front of the giant seashell - wonder what it says behind the seashell??

Friday's Adventure

2008-08-30T07:43:00.013-06:00

On Friday we bailed ourselves out of the hospital and went into the city. It was absolutely the best day we have had since arriving here in China. First we went to the Polar Ocean World and saw a dolphin show. We got to see a walrus doing sit ups! It was very entertaining and very inexpensive to go see. In fact there is no way you can see a show & polar animals in the US for what we paid here in China. After we went there, we stopped at McDonald's since Brandon was about to starve (At least he thought he was!). We then went to Fusion Bay where we saw the May 4th Monument. There's a story behind the monument which I will explain later this week. We left the May 4th and hit the zoo. Our poor driver, Su Xu Huz, was exhausted by then but not us! Brandon was able to feed the birds at the zoo which he loved! I haven't seen him laugh so hard or enjoy himself as much as he did then. Brandon was able to see the monkeys from about 8 feet away. One thing we never thought we would ever see in a zoo was.....dogs! They had an exhibit with Pomerania's, Chihuahua's, & Cocker Spaniels. We saw chickens, rabbits, hamsters & turkeys. It was kinda funny to see such common animals back home on exhibit here. We did get to see come odd creatures that we had never seen before. John & Courtney were also able to hold a snake. They asked if I wanted to hold it & I said "OH NO!" I was too close just by taking the pictures! We saw the elderly Chinese guy sitting on a stool just staring at what appeared to be a piece of cardboard. I went over to see what he was looking at & saw that he was painting a picture of the entrance into one of the exhibits. Not once did he look up at us but continued to stare at the entrance and every once in awhile he would lift the paint brush onto the canvass for a couple of strokes before he would stop to stare again. He was actually pretty good at it. I quickly took a picture of him before he lost his train of thought. We really didn't see much of the zoo. I think we were pretty wore out by then so we called it good and went back to the van. Our next stop was for dinner. We ate at a place downtown called Lisa's. Absolutely the best food we have had since arriving here! We invited the driver to eat with us since he has always been so kind to us. We ate t-bone steak, mashed potatoes, gravy, salad, penne with chicken breast & spinach sauce. You would never believe what Nick wanted.......pizza. After having pizza shoved down his throat for the past 3 weeks, he chose to have pizza for dinner. So we ordered him a small pizza. Included with the steak was soup & salad. We started off with salad which was okay. Not the best but it was good compared to what we've eaten here. Then they brought out the soup. Once I found out there was beans in it, I gave mine to the driver and chose to eat the penne with chicken (which was amazing). Mom, John & Courtney all said that was the best soup they had ever had. We were getting pretty full by then and for a little while thought that maybe we didn't order the steak. But then they started bringing out these large plates. On each plate was a huge t-bone steak, mashed potatoes sitting on a slice of tomato, broccoli, corn on the cob, fries, & gravy. We left there extremely happy (and a few pounds heavier). Would you believe it was less that $9.00 USD per person?? I told Brandon that next weekend we would go back there just so we could have one more good meal (kinda divide up the time so we'll have something to look forward to this week!) After dinner we headed back to the hospital but we still had one more errand to make. Once we got to the hospital; Jolynn, John & I took Adele (the Chinese girl who is majoring in English at a nearby University) to the RT Mart. First let me explain Adele. She came to Qingdao from her hometown (about an 8 hour train ride from here) to study English. She met Jolynn (a parent of a child being treated here) at the RT Mart. Adele asked Jolynn if she could come here and talk to her & other people so she could learn more English. Th

at was a month ago & she hasn't let us down yet. She comes here & helps us with whatever we need. We take her places so we can have a translator present. She has been wonderful to us. The night before the Watring family headed home, we were all out in the lobby talking about Adele. Someone mentioned that she had a rusty old bike that was held together by shoe strings. The peddles had broken away & all the was left were the pegs. She had once had a basket on it but that too had broken. Anyway someone mentioned that we should all pitch in & buy her a bicycle. Afterall, she has helped us out so much and she does use her bike to come visit us - it was the least we could do. So a few of us pitched in 100 RMB's each (which is $14.00 USD) to go towards a new bike. We were unable to buy the bike before the Watrings left however we decided to do it before Jolynn left. So we take Adele to the RT Mart on the pretense that I wanted to buy a bicycle for my daughter since they are so cheap here. We found the bicycles and we started asking Adele which bike would she pick out. She looked around and asked a few questions about how tall Courtney is and how big is my suitcase. She finally found a bike that she liked. It was actually ugly in my opinion but it's a good, common brand of bike here. It actually folds up for storage. So we purchase the bike & bought a basket & a lock for it. Jolynn & I got out our cameras and asked Adele to model the bike for us. She was hesitant but she did it anyway. We snapped a few pictures before telling her that the bike wasn't for Courtney & that it was for her. She was completely speechless. In her eyes we could tell that she really wanted the bike but like the perfect person she is, she was hesitant to accept it. We told her that we had already bought the bike & we couldn't take it home so she had no choice but to accept the gift. We told her that several families had pitched in to buy the bike for her. It was a gift from us to her for all that she has done to help us. She was ecstatic! I couldn't believe that an inexpensive bike like that would make someone so happy. She said that she has never had a bike so nice before & she felt very lucky. She now has a new prized possession to remember us by after we have all left. It was the perfect ending to a perfect day.... Photo's: 1st - Brandon feeding the birds at the zoo. He really had a lot of funny playing with the birds! 2nd - The flags on the left side is where the audience was able to watch the sailing part of the Olympics. To the right of that is a lighthouse. 3rd - Brandon at Fusion Bay 4th - All of us at the May 4th Monument. 5th- Courtney at Fusion Bay 6th - All of us in front of Polar Ocean World. 7th - The dolphin show at Polar Ocean World. It was amazing to see the dolphins jump so high & do the stunts that they are trained to do. John really enjoyed the show. 8th - John holding a snake at the zoo. 9th - Courtney holding a snake at the zoo (Yikes- Count me out!!) 10th - An elderly Chinese guy painting at the zoo while our driver watches him. 11th - Adele & her new bicycle at the RT Mart. She is so proud!

9:31 pm - 19 days to go!!

2008-08-27T05:39:00.004-06:00

Brandon had stem cell treatment #4 today. This one was easy since it was done through an IV. He was allowed to eat & drink up until treatment time. They had to do the IV in his foot which prevented him from walking for awhile. He was suppose to keep the IV until tomorrow but I convinced the Dr that there was no way he could go 24 hours without standing. He was doing really well so we were confident that they wouldn't need it later. After Brandon had the treatment, we were kicked out of our room for an hour while they waxed our floor. They woke us up early this morning to tell us to pick our stuff up off the floor & prepare to move our stuff outside in the hallway. It was a difficult day since several people had treatments today then to come back & find out that they have been evicted for awhile.... Everyone's opinion was that they should've done this on a non treatment day (Monday, Wednesday & Fridays are stem cell days). Last night when I saw the schedule, I noticed a change in his treatment. They had scheduled his treatment via IV instead of spinal. Since spinals are more effective, I was a bit upset. I told Kirshner that since treatment #2 was called off (but counted towards his total number of treatments) I didn't want him to have IV's. She said that it was too late to change this treatment but she would work something out. Then this morning when the Dr's came, they said that the spinal treatments were too risky for Brandon so they would only do IV's. That really left me concerned since they had said that the last spinal went fine & that he would have the rest of the treatments through his spine. After asking them a few questions, I told them that Kirshner had told me differently. They said they would speak to Kirshner & get back with us. This afternoon the Dr came in and said that there was some type of confusion this morning & they redid his schedule. NOW he will have a spinal on Monday the 1st. An IV on Friday, September 5th & a spinal on Wednesday, September 10th. Although he gets another IV, he does get an extra treatment. Well not an extra one but they will redo the one that was cancelled last week. We are extremely happy with the new schedule and we will be home the 15th. So now we're counting down the days - 19 days to go until we come home (and find a new refrigerator - apparently ours has died since we've been here) We got 2 new people in this week. They are adults - no playmates for Brandon but the new people are really nice so that will help make the time go by faster. The family that we really got close to will be leaving in the morning. We are extremely sad to see them go but happy for them. They saw wonderful improvements & we're excited that their child has a new life now with sight. Photo's: 1st - Stem Cells AKA "Yellow Gold" as it's called around here. 2nd - Brandon hanging out in the IV room while he receives the Yellow Gold. 3rd - Everyone's stuff out in the hallway. What a bad day to wax the floors!! 4th - Brandon hanging out in the day room while we wait to take control of our room again. 5th - What a wonderful view of Qingdao from the 8th floor kitchen window! I love to go in there just to look out of the window. A few of those buildings are lit up at night with lights that change colors and run up & down the sides of the buildings. Very pretty!

11:57 pm

2008-08-25T08:33:00.022-06:00

Brandon is feeling much better after his treatment. He suffered a headache for 2 days after the treatment but thankfully now that's past. He's staying the night at the hotel with Grandma - he would rather be there than at the hospital. I think (besides being a Grandma's boy) the hospital just reminds him of what's to come so he's more comfortable at the hotel. John, Mom, Courtney & Nick will be heading home on Monday the 1st. Of course we're sad to see everyone go but Brandon & I know that we'll soon be heading that way ourselves. We'll be home in exactly 3 weeks!! Yesterday my mother stayed at the hospital with Brandon while John & I went with Kirshner, another parent, aunt & grandma to Jimo. We were able to look around more without worrying about Nick running off. We then stopped at McDonald's & brought burgers back to the hospital for mom & the kids. It was a refreshing break from the day to day life here at the hospital. Last night we walked with a couple of other families to the park. We were hoping to catch the decorations lit up but we were driven back to the hospital by mosquitoes. About a block from the hospital, I looked back and saw that they had finally turned the lights on :( Maybe in a couple of days we'll try it again. There are vendors set up at the park that sells little toys that light up. It was fun seeing all the little novelty toys. Today we went to a local art shop and met a wonderful Chinese guy who really likes Americans. We bought 2 pictures at a price that was unbelievably cheap. Then as we were about to leave, he pulled out 2 chairs and a fan and asked us to sit down. Since he pulled out a fan, I couldn't resist. He asked us about our kids and America. He told us that in China, people are allowed a max of 2 children which we already knew. When we told him that we had 3 kids, he smiled real big and gave us a thumbs up sign. His English isn't that great but he really tried. After promising him that we would come back, we bowed out as politely as we could. Tonight we took everyone to an international buffet that was recommended by another family here. Our taxi pulled into this huge - fancy hotel that had a limo at the front door. (that's the only limo we have seen since arriving here). As we walk into the hotel, we all feel a bit under dressed - we're all in shorts & Nick looked like a homeless child. The buffet was pretty good. We couldn't force ourselves to eat the mixed meat (there was literally a sign stating "various mixed meat" next to the platter - we think it was octopus amongst other meats that weren't quite so obvious) or the squid but we found something that we think was steak (that's what we kept telling ourselves anyway). They had a great selection of fruit, salad & desert so the kids stuck with that. John & Mom ate lamb which I couldn't do because all I could think of was sheep. That dinner was surprisingly quite a bit cheaper than eating at the Shangra La. Which we were happy about - it was a welcoming relief from pizza & chicken. We have given up on the laundry service here. It is expensive & the clothes still come back dirty (with an added stench). So we started washing our clothes in the shower. We bought some detergent and our neighbor gave us their wash bin since they left today & wouldn't be needing it anymore. Anyway we wash them in the wash bin & hang them on hangers in the shower. We did a "load" tonight & we're hoping with the help of our fan that they will dry in a few days. I can't believe people are still washing their clothes like that - I miss my washer & dryer! Brandon's next treatment is on Wednesday. Apparently last Monday's treatment counted since they injected growth factors. They didn't give him the actual stem cells that day due to his high intracranial pressure. It isn't Beike's fault that Brandon had unknown health issues so we're okay with the fact that Brandon doesn't get another treatment to make up for Monday's failed attempt. They covered the cost of the MRI and we will not be charged for those extra services. So it looks like we'll still get home on the 15th which Brandon & I are happy for. 3 treatments down - 3 to go!! Photo's: 1st - Brandon today at the hotel. 2nd - photo of John taken yesterday as we were heading to the park. 3rd - The hospital lit up at night. 4th - Brandon with another patient who is the same age as him. They are so much like that it amazes her family as well as John & I. Brandon with the group standing in front of an Olympic decoration at the park last night. 5th - Kirshner, RaVana & John at Jimo yesterday. We are falling in love with that place! 6th - "FRUIT BOWL" with fruit & cooked beans.... YUCK! They make everything sound so appealing but then they deliver it to the hospital, it looks like this. I thought I was ordering a bowl of watermelon, pineapple, etc.

NOT beans.

11:03 pm

2008-08-22T07:56:00.009-06:00

Brandon made it through the initial six hours without a hitch so he's up & ready to start the day. Too bad it 11:07 pm here & time for bed. He hasn't had any other reactions so we're very happy to have good news to report. Now it looks like our stay here will be longer since Brandon's last treatment was scrapped. I should know more about the scheduling either tomorrow or Monday. They really don't do a whole lot during the weekends. It's usually pretty quiet here. The cleaning ladies will still be knocking on our door at 8:00 in the morning wanting to clean to room. They are getting used to me turning them away but they still try to clean. We ask them to take out the trash & sweep - that's it. I brought disinfectant wipes from home so I can clean the room myself. Everyone of the floor believes that the cleaning ladies use the same rag on every room without using a cleaner or changing rags. That's pretty disgusting.... Brandon has to stay in the hospital tomorrow. In fact he can't leave the floor at all so it's going to be a pretty uneventful day. We try to relax but the nurses or cleaning ladies are in here quite often. They're having some sort of celebration here in the city & we have heard fireworks go off since 8 this morning. (nice alarm clock) Apparently they believe that if you shoot fireworks up to the Gods, then you will have wealth. Hopefully this is a once a year type of thing because the fireworks sounded like cars backfiring all day. Up on the 8th floor we were able to see them through out the area. Tonight after it got dark, it was nice to see the show. I took some pictures & managed to get one good one which I posted on here. In the picture above you can see them in the distance. It's nearly midnight & they're still going off. Probably won't get too much sleep tonight. Photo's: 1st - Brandon during the 6 hours of bed duty. He is only able to lay on his back or on his side. He cannot lift his head for the entire 6 hours nor can he use a pillow. 2nd - The view of the fireworks from our window. (Look above the neon sign - you can see the fireworks in the sky) 3rd - A picture of Nick taken yesterday at the hotel.

4:30 pm

2008-08-22T02:30:00.007-06:00

Brandon had the spinal!! He got out of recovery about 30 minutes ago with a red rash on his face. The Dr's think he had an allergic reaction to either the anesthesia or the stem cells. Currently he is on oxygen & connected to a machine that constantly checks his vitals - just a precaution measure. We are so excited that they were able to do this spinal stem cell treatment! They did say that his intracranial pressure was still high despite changing the anesthesia and changing his body position. The next 2 days will determine whether he can have future spinals. As long as he doesn't have any spinal headaches or adverse reactions, we should be able to try it again. I feel as thought we have finally acomplished something here! Tonight we'll celebrate with "chicken" AND pizza!! The Dr's just came in and said that we won't be out of the woods for another 48 hours but so far so good. He's waking up more & playing with his cell phone. They're giving him plenty of fluids so he is having to pee in a duck urnal. He likes that! He said that he wanted to take it home so he could pee in bed. He really acts like his dad!! Photo's: 1st - We're taking Brandon to the operating room which is on the 4th floor. 2nd - The Dr's are taking him away! 3rd - Brandon back in the room hooked up to the machines as a precautionary measure.

2:00 pm

2008-08-21T23:24:00.012-06:00

Yesterday the Dr's came in with Kirshner. There's a Dr. here from another hospital that has more experience in giving spinals to children who have high intracranial pressure. After reviewing the MRI, he believes that with extreme caution, they can do a successful spinal on Brandon. So in less than an hour, they're going to give it a try. All the Dr's know that Brandon is high risk & hopefully they know what they're doing. We came here so Brandon could have spinals & we're extremely relieved now that they think it is still possible for him to have the procedure. The risks include severe spinal headache, vomiting, & nausea. We told the Dr's that under no condition will they tell us to give Brandon "just Tylenol" if he complains of a headache like before. We want Brandon to be as comfortable as possible & we do not want him traumatized by having the spinals. The Dr's have agreed to give him something stronger if needed. So we have our fingers crossed that this will be successful. I think several of the parents are planning a trip to Jimo again on Sunday so that will give us something to do. Almost everyone on the 8th floor will be heading home soon. Tami & Tyler leaves tomorrow - I'm happy for them but will miss them dearly. Miles & his dad leave Monday - Savannah & her family will be leaving Thursday. Kameron & her mom leaves a week from tomorrow. Then Corey & his dad Mark leaves right after them. How sad!! We have gotten to know all the families here so it's literally like one big family here. I never thought I would ever say it but I've gotten used to the smell. The first week here was horrible & we were ready to come home just because of it. Now we're getting tired of eating the same things. Pizza & chicken. Pizza for lunch, chicken for dinner. Sometimes we have pizza AND chicken together. Last night I had chicken & John had pizza (Brandon found brownies at the RT Mart so he's happy to eat those for dinner). I ordered smoked chicken last night and when I saw it, I was scared. It was kinda slimy and glazed with something. I asked Tami if she would like to try it so we had a stand off on who would try it first. She went first and since she didn't fall down dead, I figured it would probably be ok. It was brown meat (someone thought it looked like duck). It tasted "okay" not great. I ate one piece and half of another before I gave up. I just couldn't fool my body into believing it was chicken or that it was good. So today for lunch we had.....pizza. Tonight.....pizza. If we never look at pizza again it will be too soon. I would normally make Brandon eat something healthier than brownies for dinner however that's probably the safest thing for him to eat here so until we get back home, brownies it is!! Well 30 minutes before he has the spinal so I need to go & get everything ready. I'll update on how things are going afterwards - hope everyone back home is well. Sorry I haven't been doing individual e-mail very often. It really has been hectic here. I'll try to do better!! Photos: 1st - Brandon & the nurses today as they start his IV bag. 2nd - Brandon & John go walking around the 8th floor before the spinal treatment. After the treatment he has to stay on his back for 6 hours so we try to get him tired before the treatment. 3rd - A few of the parents out in the day room ~ the famous comfy orange sofas. 4th - The door to our "home" 5th - John & Brandon hanging out on his bed before treatment today.

2:49 am (Thursday morning)

2008-08-20T11:24:00.010-06:00

Sorry it's taken so long to update. We wanted to find out as much as we could and create a game plan before we did another update. First of all let me put every one's mind at ease - Brandon is ok. We took Brandon to another hospital 40 minutes away by taxi where they did an MRI. We had a Dr & a translator with us so it helped. While we waited for the MRI scans, the translator (Jessie), John, Brandon & I went to McDonald's for lunch. That was the first time we had been so close to McDonald's so we couldn't pass up the opportunity. Everything tasted similar to McDonald's back home (not quite but pretty close). We ordered plenty to take back to the hospital & that's what we had for dinner. Anyway once we got the MRI scans, we headed back to the hospital. The taxi driver took us on a "short cut" which only aggravated Brandon's headache even more. We took dirt roads filled with pot holes, paved roads filled with pot holes. It was rough! The translator informed the taxi driver that we don't care about short cuts, just get us on smoother ground so Brandon wouldn't hurt as bad. Once we got to the hospital, we were informed that the Dr's would look at the MRI in the morning. So we had another sleepless night wondering what the report would say. Around 9 am this morning we found our room full of Dr's & one holding a camcorder. They talked but we understood very little. We eventually asked Kirshner if she would come in and help us understand what they were saying. She said that because of Brandon's scar from his surgery (when he was a year and a half) there is now pressure on his brain. She said that the scar has created a narrow passage & that's what is causing pressure - NOT fluid which is kinda good news. She also informed us that Brandon has demilization (probably not spelled right). It means that he has some white brain matter that has either died or was never there. There is a couple of theories about that. We were told that part of Brandon's brain died either when the sutures closed too soon in his head or it's dying because of the intracranial pressure. Now does that mean his brain is becoming worse over time with the pressure & it will continue to get worse? We don't know. We were left with alot more questions than answers. We were also told that if we choose, we can continue with Brandon's stem cell treatment (IV only). Brandon is no longer a case study due to this latest development but we're still able to continue. We were told that we probably won't see results like the others simply because the stem cells are like magnets. They will find the part of Brandon's brain that is damaged and will try to repair that instead of going to his optic nerves. There is also the chance that part of them will go to the damaged area of his brain & part will go to his optic nerve. I spoke to a very good neurologist back in Colorado Springs a little while ago & asked what his opinion is. He said that the spinal test isn't that accurate and although he is "alarmed" with that high of an intracranial pressure (if indeed it is that high), he would want to do more testing. He also said that he is finding more children who has had surgery to fix the cranial stenstosis (also probably not spelled right) is having problems now (5-10 yrs after their surgery) with intracranial pressure. He said that the original surgery was not performed correctly & they're having to go back in and "redo" it. He said that in Brandon's case since he is too old to essentially "grow" bone, they would have to completely reconstruct Brandon's whole skull. But again we need more testing before we actually know what's going on. In the meantime I wasn't able to get an appointment in to see the neurologist until Sept. 16th. He said that the stem cells couldn't hurt Brandon & that since we're here, we may as well do it. After a long discussion, John & I agree. It may not help his eyesight but it may help the damaged area of his brain. Any improvement will be good. We are deeply saddened by the latest events but are happy that we are now aware of problem with Brandon that could've been fatal if not diagnosed / treated. We don't know what's in store for us in the weeks and months ahead but we know that we have a huge group of people who have Brandon in their hearts & prayers. John will still be leaving China September 1st however Brandon's treatment end date has changed & we will now leave 6 days sooner than originally scheduled. Brandon's last treatment will be Sept. 6th & we will be able to leave on Sept 9th. ** PS. ** We sadly discovered that the women here go all natural under their arms. John is disgusted. Photo's : 1st - Our hospital room with Brandon & John. 2nd - Just outside of McDonald's in a shopping center. (see the McDonald's on the left?) 3rd - John holding Brandon with Jessie the translator outside McDonald's. In order to cross the street, you must take an escalator up to a walkway above the street & take another escalator down on the other side. 4th - Above the street view on the walkway near McDonald's.

7:30 pm

2008-08-18T05:30:00.005-06:00

I wanted to wait and update everyone as soon as I had more information but I keep receiving e-mails from people wanting updated. At 4:00 pm Qingdao time, Brandon went into the operating room to receive a spinal (stem cell treatment). We watched as they put him to sleep & I felt so bad for him. Why does my son have to go through this - what did he ever do to deserve this - am I doing the right thing? All those questions flooded through me. About 20 minutes later we were about to go downstairs to get him when the Doctor came to see us. I knew as soon as I saw him that something was wrong. He said that before they do the stem cell treatment, they test the intracranial pressure. Normal is around 180. Brandon's was over 300. They said that it would be too risky to do the treatment and the Dr. said that Brandon needs an MRI to determine what is wrong with him. He mentioned "hydrocephalus" & that scares me. Everything is on hold until we find out the results of his MRI. If it is hydrocephalus, the stem cell treatment will be put off indefinately & we will return to the States. If the results come back okay, they still won't do the spinal treatments but will do the IV treatments. We should know more either tomorrow afternoon or Wednesday. They will transport him to another hospital 40 minutes away to do the MRI since they don't have the machine here. Please keep Brandon in your prayers.

10:11 pm

2008-08-15T20:06:00.007-06:00

Today we realized that Qingdao is HUGE. We left the hospital at 10:30 am & after an hours drive, we reached our first destination...the beach. It was hazy (I think it was the humidity because it kept fogging up the camera lens). The smell wasn't the best but it was a nice view. We spent $1.57 on sea shells at a seaside stand since we were unable to get any of our own. We had been told to stay off the beach because of possible sand fleas. After we left there, our journey began. Our driver took us down roads made for one vehicle with oncoming vehicles flying by us. We would get behind a slow driver & he would go around them with cars coming at us. I thought we were going to die. We finally made it to our 2nd destination: Jimo. It's a huge indoor flea market. Apparently you never pay tag price for anything. If you pay more than half price, you paid too much. It consists of 2 stories below ground and 2 above ground. I was on the lowest level thinking that we could easily be buried if an earthquake hit. Anyway Jimo consists of hundreds of stores about the size of our spare bedroom. We bought 3 pairs of name brand thongs for a total of 70 RMB's or 10 US dollars. We got a couple things for our family back home but we just weren't into the shopping scene so we decided to leave early. Apparently our driver thought we would spend 4 hours shopping so he left the van & didn't return until 5 pm. We hung out on the steps in front of the van for 2 hours waiting for him to come back. After Jimo we went to a hotel/restaurant for dinner. The Shangri La was a really nice place. They had a buffet so we ate until we couldn't eat anymore. Unfortunately they don't tell you how expensive it is until you go to pay. We nearly choked over our 1254 RMB bill. It was the best meal we have had since boarding the plane in Colorado Springs but it will also be the last time we eat there. We got back to the hospital 10 hours after we left it - completely drained. Good thing the weekend is here so we can just relax for a couple of days before we have treatment #2. Monday's treatment will also be Brandon's first spinal. We've explained to Brandon what to expect and he's being such a good sport. He's ready to get started. Pictures: 1st - Hanging out at the beach 2nd - Dolphins statue (it would look better at our house!) In the background you can see the ships. 3rd - You thought your job was bad. This is China's version of the "garbage man". We watched him pull that "wheel barrel" thingy up & down that steep road gathering trash from the garbage cans. 4th - Jimo on the right side with the red roof. I was so scared Nick would run off. We would've never found him in that crowd.

1:29 am

2008-08-14T11:29:00.009-06:00

Treatment Dates:

1st: Wednesday - August 13, 2008 (IV)

2nd: Monday - August 18, 2008 (Spinal)

3rd: Friday - August 22, 2008 (Spinal)

4th: Friday - August 29, 2008 (Spinal)

5th: Wednesday - September 03, 2008 (Spinal)

6th: Wednesday - Septmeber 10, 2008 (Spinal)

10:19 PM

2008-08-14T08:19:00.016-06:00

Today Brandon was finally able to leave the floor after they took his IV out. We decided to get the kids out and go to the park. We walked from the hotel room to the park (about a mile away). It was in the 90's today with the humidity as high as ever. We thought it would be fun for the kids but they were miserable. Since Brandon CAN NOT get dehydrated we only made it to the front of the park. Maybe next time.... So we went back to the hospital and had water & fruit ice cream cones. Tonight they had a pizza party on the floor. Today we asked the interpreter what "potato strips" were & we learned that they are french fries - AND they are! They are almost like American fries (they just don't have salt which is fine with us). We also ordered spaghetti. It's actually better than American spaghetti! It's spicy with jalapenos which make it really good. It had meat balls in it & I tried not to think about what animal that meat came from. We had to eat early so we could take mom, Courtney & Nick dinner. John, Brandon & I walk outside and it's pouring down raining. Not a single taxi could be found so we start walking to the hotel. I had rubber thongs on & they kept slipping so I ended up taking my shoes off. We looked like drowned rats by the time we walked the half mile to the hotel. We were almost to the hotel when 2 doormen ran out to us with umbrella's to help protect us from the rain (it was a lost cause - we were drenched!).We learned today that we shouldn't tip people here. Apparently they can lose their jobs if they accept tips. Every since we arrived we've been giving the food delivery guys & the door men who find us taxi's all a small tip (10-20 RMB's which is $1.42 - $2.85 US dollars). Tomorrow we get to go sight seeing for the first time. We are going to the beach and to Jimo which is like a large flea market. We're looking foreword to seeing something outside of our 1 mile radius.

Pictures: 1st- Family picture in the park - Qingdao, China 2nd- They have people here on bicycles who pick up trash from the streets. They are everywhere! Guess that explains why you rarely see trash on the ground. 3rd - A 3 wheel pickup in front of The People's Hospital where we are staying. 4th - These motorcycles are every where! Apparently they're the vehicle of choice here. 5th - A great scenic picture.

1:06 pm

2008-08-12T23:06:00.004-06:00

Brandon had his first stem cell treatment today (about 2 hours ago)! This morning he went in for his normal acupuncture and afterwards they put in an IV. It took them 2 times to get it in and Brandon didn't cry at all!! The stem cells were an hour late getting here but as soon as they arrived, the nurse took us into the IV room. Today he received the stem cells through an IV in his hand. (The remaining 5 treatments will be in his back). The nurse (Jessica) that started the IV was so good to Brandon. I think she's one of our favorite ones. She told us that downtown Qingdao is beautiful and the ocean is nice. She said that there's several old buildings downtown so we're looking forward to venturing out this weekend. The nurses are all so nice to us & go out of their way to help. We finally have the smell out of our room so it isn't bad now. We dread leaving the 8th floor - that's when stuff really smells funky. We appreciate the emails we're receiving - Thank you! It helps make the days go by quicker. Hope everyone is well back in the States - we miss you!! Photo: Brandon with Jessica receiving his first stem cell treatment (see the yellow bag??)

8:10 pm

2008-08-12T01:51:00.009-06:00

This morning Brandon had acupuncture - again he didn't mind the needles protruding from his forehead which is a good thing. He just lies there for the entire 30 minutes that they're in. Today he didn't even feel it when they took the needles out. We saw the Dr. during acupuncture so afterwards we were free to roam. Later he went down for x-ray and an ECG (apparently their version of an EKG). He has his first stem cell treatment tomorrow morning at 10:00. This one will be an IV and the rest will be in his spine. We are looking forward to beginning treatment. We took a watermelon to the hotel for Mom & Courtney. Last night I bought a watermelon, 2 big bowls of ramen like noodles, 2 ice creams & 2 waters for 28 RMB or 4 US dollars. Tonight we bought ice cream from the downstairs lobby. John bought a drumstick & I bought a small container of purple ice cream. I couldn't figure out what it could possibly be....it was popcorn flavored ice cream. YUCK! They also had corn flavored ice cream. At the airport in Korea I saw a guy eating corn on the cob. I thought it was a little unusual to be eating it at the airport - now I understand. These people just really like corn. We went to the RT Mart today hoping to find something edible. For some reason John wanted to go through the meat department. We saw bins of liver, chicken feet, chicken neck, and some type of string meat. Not stringy but a ball of string meat. It looked pretty gross & the smell was even worse. We bought a loaf of bread, peanut butter, some type of orange drink that tastes like Tang (that actually isn't too bad), tea bags, sugar, & Tide (they only have it in a bar form like bars of soap). Oh and we found chocolate milk - they are in little bags. Brandon & Nick really like them but Mom & John thought it was gross. Brandon is the fortunate one. We stock piled his cinnamon toast crunch so he should have enough to get him through this trip. Hope everyone is well there. We miss you guys & are counting down the days until we get to come home! Photos - 1st: Brandon is having an ECG the day before his receives the first stem cell treatment 2nd: The scenery here is beautiful! 3rd: Chinese products - from left to right - children's powdered milk, sugar, powdered orange drink (like High C), cappuccino, and Tide in the bar form.

8:53 pm

2008-08-11T06:54:00.011-06:00

This morning Brandon had blood work done as well as accupuncture. He did really well with that even though the needles sticking out of his head look bad. Since he handled that so well, we decided to do it 5 days a week. He will receive his first treatment on Wednesday. We are really looking forward to it! The other patients, their families & nurses are so nice here. It really helps especially since we're already getting homesick. Tonight I ordered a small supreme pizza.....bad idea. It had pineapple & corn on it. For some reason these people like corn on everything. Corn and Thousand Island. I also ordered a fruit salad tonight which was covered in diluted Thousand Island. Nothing like eatting bananas, pears, watermelon & Thousand Island...... I want Taco Bell!!

Pictures: 1st - Outside our hotel room in Seoul, Korea 2nd - The RT Mart in Qingdao, China. The RT has multiple levels and you check out on the bottom floor. 3rd - The hospital that we're at in Qingdao. 4th - Brandon's 1st acupuncture. He doesn't mind it at all!

7:42 am

2008-08-10T17:38:00.030-06:00

We are in Qingdao. We made it in yesterday afternoon (China's time). It was a LONG trip & every one's glad that the plane trip is over. We were able to see the Grand Canyon an hour and a half after we left Colorado Springs -that was really cool! We got lost at LAX and everyone we asked sent us down a new direction. After walking for an hour we finally found Tom Bradley International. Before we boarded Korean Air, we had to go through the metal detector. The lady who was in charge started yelling at us. I went first after I finally figured out what she wanted. As I got through the detector, she started yelling. I turned around to see what she was yelling at and I accidentally bumped into the detector. That got her attention and she yelled "What you have!?" I said "I don't have anything, I bumped into the metal detector". She said "You clothes too big, must search!" So that was the highlight of LA. We landed in Korea and as soon as we stepped out of the airport, the first thing that hit us was the humidity. Living in Colorado really spoiled us. I didn't realize that the humidity could be so bad. Everyone was drenched within 15 minutes. We stayed in a Best Western in Seoul, Korea. It was a nice hotel & we slept good despite the hard beds. (Here at the hospital we are sleeping on box springs - no joking). The next morning we went downstairs for breakfast. We were in for a rude awakening....for breakfast they had a buffet. We had soupy scrambled eggs, boiled bacon, little wienies, and fruit. (they also had corn but for breakfast we passed). With the exception of the fruit, nothing else tasted anything like American food. Being next to the airport, it was expensive. We paid 122.00 US dollars for that "breakfast". On the plane from Korea to Qingdao we were served a rice platter (garnished with some type of raw meat & pink fuzzy stuff) & some kind of either meat or vegetable cut into strips. Despite the smell, I had to try it so I could say I did. The rice was nasty but edible. The pink stuff stunk as bad as it tasted. The red meat/vegetable strips was down right disgusting! It was hard but chewy & very spicy. I couldn't make myself swallow it! When we arrived in China, they x-rayed our bags and pulled us aside to look through our DVD's. Apparently they wanted to make sure the movies were appropriate. We got through customs and met Jack for the first time. Jack is one of the translators. He's a very cheerful guy and we immediately liked him. Leaving the airport we almost hit a car. If I don't have heart failure from their driving, it will be a miracle. They swerve in and out of traffic - don't know what the speed limit is - they probably don't have one. They all go one speed though.....FAST. After we took Courtney, Nick & Mom to the hotel, Jack took us to the hospital. The first thing we noticed was the smell. The people are really nice & friendly but the smell is something that I will never forget or get out of my clothes. We are in room 9 on the 8th floor. We have a great view of the mountains from our window. We met a few Americans and everyone is so nice. After we dropped our luggage off at the hospital, Jack took us to the RT Mart. It is a 7 story shopping center that has everything. Jack grabbed a shopping cart & off we went. We started on the 2nd floor which is the grocery section. To get the the 2nd floor, we had to take an escalator that has no steps - just a steep floor that moves. Nothing really looked familiar except the fruit (well even some of that was unfamiliar). Instead of packs of chicken, they have unrefrigerated bins with chicken parts - legs in one bin, breast in another, etc. People were picking through the chicken legs looking for the good ones. It looked unsanitary and all I could think of was salmonella. We bought chips, crackers, grapes, plates, cups, soda, napkins, plastic silverware & containers. Everything was pretty cheap compared to the US. Photo's: 1st - looking out over the Pacific Ocean on Korean Air 2nd - Courtney in Seoul, Korea. Waiting on a bus to take us to the Best Western Hotel. The humidity was bad!! 3rd - Our first experience with an Asian toilet at the airport in Tokyo, Japan. 4th - Nicholas drinking his first Asian Coke on the plane going over the Pacific Ocean. 5th - In Los Angeles, California at LAX - That's the plane we took to Seoul, Korea. 6th- Courtney, John & Brandon waiting for our flight in Los Angeles.

9:00am

2008-08-09T17:51:00.003-06:00

We have arrived in Seoul, Korea!! Everyone is a little tired, cranky, stiff but really excited to be so close to Qingdao. We board a plane in 4 hours to Qingdao (only a 35 minute flight). When we got here last night, I was too exhausted to update the blog - sorry.... Once we get settled in Qingdao, I'll fill everyone in on our trip!!

5:10 am

2008-08-06T02:39:00.015-06:00

It has been CRAZY this week. In less than 48 hours we will be leaving our house to go to the airport. For 8 months, we have dreamt of this moment. Through blood, sweat & tears we are finally at the end of one journey and we're about to begin another chapter of our lives. And we couldn't have done it without the people who have fallen in love with our little boy. Brandon has touched so many lives just has he did with me the moment the nurse placed him in my arms. As I write this, I can't help but cry. We are about to embark on a journey of a lifetime. My baby has this wonderful opportunity to see and I'm so happy for him. If I have learned anything from the last 8 months it's that people truly care. We met a lot of wonderful people who have made a difference in Brandon's life. One family we met a few weeks ago put their God given talent to work to raise money for Brandon this past Sunday. Kim Phillips heard about Brandon and wanted to help. Her wonderful family put on a concert for Brandon at Harmony Bowl on Academy Blvd. Honestly before Sunday, I had no doubt they could sing - I just didn't realize how well they could do it. What came from their mouths gave me goose bumps. I had never heard someone sing as well as they did. (even the pros could take lessons from that family!) 100% of all donations went to Brandon's Fund. Harmony Bowl also donated 21 lanes which we sold for $10.00 a person for 2 games. It was great fun! The highlight of the day was when Thalia & her father, George sang Brandon's favorite song - Fast as You by Dwight Yoakam. Brandon who had been exhausted from Saturday night's fight suddenly gained enough energy to dance. He absolutely loved it! So THANK YOU Thalia & George for making Brandon's day. THANK YOU to the Phillips family (and Larry) for putting on such a great fundraiser.

Photo's: 1st: Brandon's banner at the entrance of Harmony Bowl 2nd: Kim Phillips - the one who made all of this possible 3rd: Thalia & her talented daughter - hard to believe a 14 year old can sing as well as she does. 4th: Trent & Thalia's father George - gotta love him! 5th: Kim's husband, Trent Phillips singing for Brandon.

3:35 am

2008-08-03T02:44:00.008-06:00

Tonight was the "No Mercy Extreme Fight". I have never experience anything quite like it! It was exciting and I'm still in awe over the whole thing. We were treated so well! They gave us VIP seating (THANKS NATALIE) so we had a great view. We were given a T-Shirt and I believe almost all the fighters signed it for Brandon including the announcer. Our favorite signature was from Tyrone Wright. He went into that ring to fight for Brandon & he did an amazing job. We were so proud of him!! His opponent in the cage was Chris Holland. When I first met him, the first thing I said was "I hope you lose". Later I felt guilty because he truly is a great person. Tyrone & Chris both posed for pictures with Brandon after the fight and that's really was it was about. Tyrone had a pre-existing injury which he tried to ignore but in the end, it wouldn't be ignored. He gave it his all & we are so proud of him. Doesn't really matter who won in the cage - Brandon was the real winner tonight. Tyrone apologized to us for not winning the match and my heart went out to him. He really wanted this for Brandon & we really wanted it for Tyrone. It just goes to show what type of people these guys are. In the cage they are vicious. Outside, they have a heart of gold. During intermission, they called us into the cage and the announcer told the crowd about our fight for Brandon. So many people clapped for Brandon, I wish I would've explained it to him better. After everyone knew about Brandon they proceeded to go to our table to donate money to him. We had a large jar which filled up in a matter of minutes. The grand total of amount raised tonight......drum roll please.... $1,853. We had fighters, kids, women, & men standing in line to donate to him. It's hard to describe how wonderful that felt. And this all happened because Tyrone Wright happened to see Brandon's story on channel 13 news website. God sent us an angel. He sent us Tyrone. And well Louie too :) Louie made sure we were comfortable and was a great host.

Photo's:

1st: Cage Opponents Chris Holland & Tyrone Wright with Brandon

2nd: Brandon's holding the championship belts for some pictures. It was kinda loud so Brandon kept holding his ears. For those who don't know him, his ears are really sensitive. I was standing on the right trying to talk him into putting his hands down long enough for a picture. Also on the right is Brandon's dad, John & Tyrone's Manager, Louie.

3rd: Brandon, his proud dad - John and I (proud mom) in the cage during intermission as the announcer (far right side) introduces Brandon and tells the audience his story. Squatting with Brandon is Louie, Tyrone's manager. Louie has been great to us and we will never be able to thank him enough for the kindness he has shown to our family.

5:27 pm

2008-07-26T17:27:00.009-06:00

Yesterday Brandon turned 8. He made his rounds asking everyone to sing "Happy Birthday" to him. He said "Dang I'm getting old!!" We took him out to eat at his favorite place and gave him his gifts. He didn't like anything he received because it didn't include a cell phone, vacuum, or carpet shampooer. But he didn't mind too much.

He was just enjoying the fact that it was "His day".

http://www.youtube.com/watch?v=KmEfopd3x1I
I received this link yesterday from a guy from MMA. It's a great video of Brandon & Tyrone Wright (The fighter who is dedicating his fight to Brandon).

9:52 pm

2008-07-23T21:52:00.012-06:00

Today is a sad day for our family. My great aunt passed away today after a long illness. We know she is in a better place and she's no longer suffering. Despite this, we must continue our efforts to get Brandon to China - We know that's what she would've wanted. We leave in 16 days!! We had a wonderful weekend and met many people who will stay in our lives long after Brandon has the treatment. Saturday was the car wash fundraiser at the Hub. Between the car wash, chip repair, face painting, raffle ticket sales & donations, we raised $1,236.00. I am still selling raffle tickets so please let me know if you want in! The winners will be announced at Harmony Bowl on Academy at 3:30 Sunday August 3rd. During the car wash, Kathy had her family there to help. I can honestly say I have met the perfect family. She's been amazing - her kids are wonderful & her husband is great. Her 15 yr old daughter, Michelle, surprised me when she said that she liked her twin 11 yr old brother's Chris & Michael. My own daughter has little patience for her 2 brothers so I was expecting the same from Michelle. Not true - she truly likes hanging out with them & she's the perfect "Big Sister". Chris & Michael were so funny & adorable - we argued over football teams and I genuinely had fun being with all of them. Kathy's husband Chris was so helpful & easy going that it didn't take long before it was like hanging out with old friends. They made the day go by fast despite the heat. THANK YOU!! We met several people at the car wash who came out to meet Brandon after hearing his story on Channel 13 news. We couldn't have done it without The Hub Car Wash & their employees - THANK YOU! On Sunday we finally met Tammy & her family. Tammy got in touch with us after hearing about Brandon and wanted to help. They invited us over for a BBQ and they were wonderful hosts. Tammy made gift bags for all 3 kids. Brandon had a blast playing with a ball she had given him. He kept throwing it up towards the ceiling fan and thankfully he didn't break anything. The BBQ was absolutely wonderful - THANKS TAMMY!! I can't wait to get together again soon. After the BBQ we met with Kim Phillips, her beautiful kids, her husband Trent, his sister Thalia & her kids. They were so funny and soon after meeting them, they had us all laughing. They have graciously offered to perform at Harmony Bowl on August 3rd from 1pm to 4 pm (100% of all money raised will go to Brandon). We are looking forward to seeing them in action! They are very entertaining and I'm sure it will be memorable. We had such a great weekend despite the time constraints. We're looking forward to the new friendships we have developed and I'm sure we'll have plenty of laughs along the way - THANKS EVERYONE!!

Pictures:
1st - Brandon with the Gregory Family in front of the Hub. Left to Right: Chris, Michael, Chris, Michelle, Brandon & Kathy.
2nd: Brandon with Tammy at the BBQ.
3rd: Brandon with Tammy's grand kids & neice. Left to Right: Tyler, Sophia, Brandon and Kaelee. On the floor in front of them is Andrew and Brittney. They all live several hours away but we were fortunate to be there on a day that they got together. Brandon & Nick had fun playing with them!
4th: At Harmony Bowl - Standing with Brandon is George, Thalia, Kim, her husband, Trent & their three kids. Nick is hanging out in the background.

4:40 am

2008-07-19T04:40:00.003-06:00

Today is the day of the car wash!! I'm looking forward to it - with a BBQ & face painting, it should be fun!! I haven't been sleeping well lately - completely stressed over the upcoming trip. ONLY 3 WEEKS AWAY!! I'm so afraid I'm going to forget something or get there & realize I should've brought something. I've never had anxiety attacks but I really think I've had a couple in the last couple of days!! If anyone has any tips on what to bring - PLEASE let me know. A lot of people who read this blog has already been to China and knows the ins & outs of it so I would appreciate any helpful tips. I purchased a translator to help us in our day to day adventures in China - PLUS hopefully it will help prevent an accidental ingestion of a cat or dog. I've been reading horror stories on what people are accidentally eating over there & it's pretty scary! Brandon on the other hand will be completely fine as long as he has his daily dose of Cinnamon Toast Crunch & fries. He's counting down to August 8th and reminds me every day of how long until we leave (of course I really don't need reminding - I'm aware of it every minute of the day!). I'm really happy that he's excited. We've been searching for a treatment for 7 years and our dream is about to become real. We honestly could not have done it without so many people. This journey has really opened my eyes to the fact there are so many others who need help. We recently met a blind man in Colorado Springs who has been down on his luck. He had a cane that needed to be replaced years ago and was in desperate need of a meal. We took him to a hamburger place & fed him then took him to his apartment. That night we ordered him a replacement cane. We really couldn't afford it but we felt the need to try and help him like people has helped us. I'm sure there has been several people who donated to Brandon that really couldn't afford to but felt the need to - just like we did with that man. His new cane arrived in the mail 2 days ago & it really felt good to give it to him. He was absolutely thrilled with it and thanked us repeatedly. I wish him luck in his future endeavours. Since Brandon was diagnosed with ONH, John & I have a new respect for the blind. I don't mean that we didn't have respect for them before but we can now appreciate the difficulties they face with day to day life. That could be why God chose us to have a blind child - maybe we needed to experience this first hand in order to be more understanding and better people. There's a reason we were given Brandon & I don't really care what the reason is - we love him so much & could never imagine life without him...

10:14 PM

2008-07-14T22:13:00.003-06:00

The car wash will be this Saturday July 19th from 7:30 am to 6 pm at the Hub Car Wash & Diner at 4460 Forest Hill Rd (next to Garden of the Gods & Centennial). We will have Brandon there for most of the day. The car wash will be donating part of the sales to Brandon and will also be taking donations for him. There will be a BBQ, face painting & a chip repairman who are also donating a portion of the sales to Brandon. We also have several "Donation Prizes" valued at nearly $1,000.00!! Come on down & enjoy the day with us!! Channel 13 news was contacted by a company who would like to do a concert benefit for Brandon on July 26th. The singers are local talents and from what I've been told are well worth the time to go listen to them. They are working on an exact location and time so I'll let everyone know when I find out. We are turning in our Visa applications tomorrow - the very last application/form/paperwork that we have to do before we leave (I think!!). Brandon is so excited that the trip is only a few weeks away. He keeps asking what he'll be able to bring. Brandon has never played with traditional toys and has opted for electrical appliances. He likes to hear the blender, can opener and is sad that he will be unable to bring the vacuum or carpet shampooer to China with us. I told him that they are too big & the pilot of the plane won't let us take them. I couldn't imagine taking a vacuum to China for Brandon to play with! I really hope that after the treatment Brandon will start to enjoy normal toys. He really hasn't had a "childhood" to speak of. He has grown up not playing with toys or playing with other children. He has Courtney & Nick to play with but he doesn't like to. That has been the worst part of Brandon's condition. He is more like an adult than a child and he has missed out on so much growing up. If he can only gain one thing - I hope it would be for him to enjoy playing like other kids his age. He would be so much happier and I think he would enjoy life more. In just a few short weeks, his life will hopefully change for the better & I can hardly wait!!

2:46 am

2008-07-09T03:12:00.010-06:00

Wow, sorry it took me so long to update the blog. We've had an eventful couple of weeks. First of all we met with Tyrone Wright and his manager Lou. We met them during practice and although we tried to stay out of the way, Brandon couldn't help but want to "fight" someone. They were wonderful hosts and obliged Brandon by loaning him a pair of gloves. He practiced hitting & kicking (with a huge grin on his face the whole time!!) Everyone signed a champion belt before presenting him with it. Brandon didn't like it at first and wanted nothing to do with it. After we got home, I explained to him that it was like an award. After he understood that it wasn't a belt to hold his pants up, he liked it. Channel 13 news camera man, CJ, was there. It aired on the news 2 days later. http://www.krdo.com/Global/story.asp?S=8565173 At the end, Brandon got to "fight" Tyrone. We are looking forward to watching Tyrone fight on August 2nd at the city auditorium in Colorado Springs. A portion of ticket sales will be donated to Brandon's Fund. We would love to see you there!! You can read more about the event at

http://mmabuzz.com/index.php/tyrone-wright-helping-to-give-sight.html#pc_8009

A car wash is being arranged on July 19th in Colorado Springs. More details will become available soon. We also met with a group tonight who are wanting to arrange a rodeo for Brandon at the end of August. Details are still being worked out and again, they will become available as soon as I know them!! Brandon's birthday is in two weeks (July 25th). We have high hopes that next year he will be able to see the candles that he'll blow out. We leave for China in less than a month - YEAHH!! We made the final payment for the treatment on Monday July 7th. My 29th birthday was on Monday and to be honest, that was the greatest birthday. Knowing that my son's treatment was paid for - it was a huge relief!! On June 30th we had our overseas vaccinations. Brandon was absolutely petrified of the shots and as much as we hated to, John & I had to hold him down. (He's a fighter!!) I felt terrible and I think I cried more than he did. I hated to make him go through that but we knew it was in his best interest. He had a total of 3 shots.
Photos above:
1st photo - Tyrone & Brandon
2nd photo - Brandon with Channel 13 news camerman, CJ
3rd photo - Brandon with Tyrone's manager, Lou

5:57 Pm

2008-06-22T17:57:00.005-06:00

We did a candle fundraiser a few months back and we had a HUGE response from it. We raised over $1,000 in profit in candle sales. I've had a few people ask me if I would do another candle fundraiser and after resting a week from the hamburger fry, I decided that I could survive another candle fundraiser. So if anyone would like to order, please let me know at kstewart@elpasotel.net - I can email you a list of scents, sizes & price. I need all orders in by July 4th (mine & John's wedding anniversary). On Wednesday (June 25th) we meet with a guy who saw Brandon's story on the news. Tyrone Wright is a mixed martial arts fighter who wants to dedicate his August 2nd fight to Brandon. He has asked us to be there so Brandon can get in the ring and be introducted to the audience. He has also offered to pass a bucket around in the audience for donations for Brandon. Brandon is looking forward to meeting a "fighter". He thinks it's funny that people fight on a stage.

8:09 PM

2008-06-18T20:09:00.003-06:00

In the last post I added a donation to the fundraising event in Scott City, Kansas that really wasn't "part" of the Hamburger Fry. And so I would like to thank the children at the Scott Mennonite Vacation Bible School for generously donating their change to Brandon's Fight For Sight. They raised $423.00!! We have had several children donate their change or piggy banks to Brandon. In a way it makes me proud that the children of our future so thoughtful but it saddens me as well. They unselfishly give to Brandon instead of buying that new toy they have been saving up for. At Ellicott Elementary, a few kids donated their savings instead of buying a wii console that they had been saving up for. They just said they would start over on saving for one. It literally brought tears to my eyes. Tonight I was told that a few children were selling lemonade on Main St in Scott City for Brandon during the Hamburger Fry. I wish I knew who they were but my mother in-law wasn't sure either. If anyone knows who the children were, please send me an e-mail at kstewart@elpasotel.net

We have had $3,355.66 in donations to Brandon's ENT account since Brandon's story was aired on Channel 13 news. I wish I knew who the donors are that put money into Brandon's account but unfortunately it only shows up as a deposit (no names). So to the countless people who have donated to Brandon's ENT account - THANK YOU! I truly wish I could send a thank you note or call all the people who have helped Brandon but sadly many names remain unknown so all I can do is recognize them here on Brandon's blog.

11:22 PM

2008-06-14T23:22:00.004-06:00

WE RAISED $5,969.48 IN THE SCOTT CITY HAMBURGER FRY!! THANK YOU SCOTT CITY!! The hamburger fry was a complete success and we owe a huge "Thank You" to everyone who helped make the it a success. From the ones who cooked the hamburgers to the ones who bagged the burgers, poured drinks, sold raffle tickets, and donated items. And especially to the people who came out to show their support in Brandon's Fight For Sight. It was really nice to walk around the park and see so many smiling faces who

were there to enjoy the day with us. The band was great which only topped off the perfect day. We were blessed with absolutely the best weather - not too hot, but not cold and NO WIND!! Brandon had fun meeting all the people who have been rootin' for him. He was able to swing for awhile which was a big plus for him. At the end of the day, Brandon drew the raffle ticket winners. We were able to sell 83 lbs of left over (uncooked) hamburger for 2.00 a lb. As soon as we got back to Grandma & Grandpa's house, Brandon was ready to put his PJ's on and go to bed. It was an exhausting weekend but we had a lot of fun. PICTURES: Top photo is Brandon in the town of "Brandon, Colorado". Every since we moved to Colorado Springs, we go past Brandon, Colorado on our way back to Kansas. For almost 5 years I have been wanting to stop to take a photo of Brandon in "Brandon" but the timing was wrong (didn't have the camera, Brandon was sleeping, too dark, etc.). Finally today on our way back home, I was able to stop for a few minutes to take the picture. 1st left picture: Lila, Brandon, & Grandma Bonnie at the donation / raffle table. Brandon met so many people who are looking forward to the day we board the plane for China. 1st right picture: several people brought out their lawn chairs to enjoy the hamburgers, listen to the band, and soak up the perfect day. 2nd left picture: Brandon is able to tell the crowd "Thank You" after he drew the winning raffle tickets. Standing next to him is Bonnie Christianson & Grandma Bonnie. 2nd right picture: Harold Wright and his band. They were great!! Since John's birthday was the following day, they sang "Happy Birthday" to him. The 3rd left picture: We had so many people who volunteered their time to help cook hamburgers, wrap them up, pour drinks, & toss the cookies in the bags.

9:57 PM

2008-06-11T21:57:00.000-06:00

Today we met a very nice guy, Andy, who donated $1,000 to Brandon's Fund. Andy became blind when he was 9 years and when he heard Brandon's story on the news, he decided to help. He called Channel 13 News station who was kind enough to set up a meeting between all of us. John, Brandon & I met this morning at ENT Credit Union with Jennifer Brown (Channel 13 news), her cameraman, CJ, and Andy. Channel 13 did an update and interviewed Andy which will air next Monday. Brandon asked Andy for a hug which he received and then they compared canes. We exchanged e-mails and hopefully we can stay in touch. Andy lives in Pennslyvania but he comes to Colorado a few times a year. We're heading to Kansas tomorrow for Friday's fundraiser. Everyone there has really helped our plight for Brandon and I can't wait to tell Scott City "Thank You"!! Photo: Jennifer Brown with Brandon & Andy.

8:03 PM

2008-06-09T20:03:00.000-06:00

Brandon's story was on the news today!! Brandon was so excited to hear his voice on the news. They did a great job with Brandon's story and I'm very happy with it. I hope it will generate more donations but I also hope other parents will discover that there's hope for their child as well. I wouldn't have discovered this treatment if it hadn't been for Channel 13 news doing a story about the girl in Virginia who was seeking treatment in China for ONH. We have certainly come a long way since that night in December. There is a very kind lady (Kathy) who lives in Colorado Springs that is taking donations for Brandon. In exchange for a $20.00 donation, she is handing out containers of homemade salsa (honestly quite possibly the BEST I have ever tasted). The WHOLE $20.00 goes directly into Brandon's fund. She isn't taking money out for the containers or for the cost of making the salsa. She is a wonderful lady & I'm so happy to have met her. The top left photo is of Kathy & Brandon. Friday we took orders for salsa and had some time to taste test the goodies. John was helplessly addicted!! "Thank You" to the people who have already ordered her salsa!! If anyone is interested in ordering salsa, please let me know. The photo's above and to the left are of Brandon with a couple of women who have helped from the very beginning. They also ordered salsa Friday. THANK YOU Ayesha (in the photo above) & Angie (with Brandon in the photo to the left) The last picture is of my sister in-law Aspen. I forgot to take a picture of her with Brandon on Friday when everyone was taste testing however below is a picture of Aspen with my husband's brother Jason & their 3 year old son Kordnse. Aspen has literally helped with every fundraiser we have done here in Colorado. From taking candle orders to helping set up at the yard sale to being yelled at by "bossy", she has never complained nor has she ever turned her back on our efforts to get Brandon to China. She has been more of a sister than a sister in-law these past few months and for that, I cannot thank enough.

5:09 PM

2008-06-03T17:08:00.000-06:00

Brandon's story will be on the news here in Colorado Springs!!! We were interviewed at our house this morning & it should air this coming Monday on channel 13 news. You can also access his story online at their website Monday at http://www.krdo.com/ - We made the decision to go on TV because we need help. We're still short on the money needed to take Brandon to China. I can't imagine doing all of this and not have enough money for the trip. Brandon needs this treatment & as a mother it hurts to know that there is a chance we won't have enough money. We received our passports today. My picture is as bad on my passport as it is on my drivers license. All that's left on the legal part of our trip is to apply for the Visa's. On Sunday the Comfort Inn in Garden City hosted Brandon's hamburger fundraiser. It generated $724.00 so we're inching closer to our goal. THANK YOU to everyone who helped with that fundraiser!! The picture on the right is of Brandon's Grandma Marilyn (seated on the left) and his Aunt Carol (standing) in front of the Comfort Inn. In the picture on the left, Brandon is pulling raffle tickets out of the bowl for the drawing. (he loved his job!!) Congrats to everyone who won!! Prizes included a quilt, 2 portable DVD players, a garden bench, and certificates for a stay at the Comfort Inn. During the fundraiser, we met a little boy who also has Optic Nerve Hypoplasia. Looking at him, I couldn't help but remember back to when Brandon was that age (2). I have learned quite a bit in the last 5 years & I'd like to think that I've become a stronger person because of that. I gave his family the information for the treatment in case they decide to persue the same journey that we have chosen to take. I wish him & his family luck in whatever choice they make. I realize traveling to the other side of the world in hopes for improved vision is not for everyone. I guess our decision was an easy one. Personally I have a hard time accepting illness, death, birth defects, etc. When Brandon was diagnosed with ONH, I really thought his life as we knew it was over. (remember I was only 21 - very naive). All of my hopes and dreams for my son was over. It took me a few years to learn that Brandon is just like every other sighted child - he just does things a bit differently. Yes I do have hopes that my son will soon be able to see the world he lives in. Everyday I wake up & think that we're one day closer to having the treatment done. I will never regret making the decision to take Brandon to China. Afterall this is his only chance for sight.

10:54 PM

2008-05-21T22:54:00.000-06:00

I got several things done today which means we're getting closer to "D-Day". I had to take Brandon to Longmont, Colorado today so we could get his passport. Apparently there is a law that requires both parents to be present in order to get a passport for a minor. If one parent is absent, they have to fill out a form saying they give permission to have the minor obtain a passport. It's a really great idea but it put a hinder in our plans. I had to take Brandon to where John was working since he's only home on weekends. Anyway we got the passport applications filled out & we should receive them in 2 weeks since we had them expedited. Total cost for 3 passports / pictures - 541.00!! Yes you heard right - THREE passports....John will be coming with us for the first half of the trip. His return flight to the US will be on September 1st. I'm so excited that John will be able to share this wonderful experience with us. Okay here is our Itinerary: August 8th leave Colorado Springs at 6:20 am on United Airlines. Arrive in Los Angeles at 7:45 am (2 hours 25 minutes). Depart on Korean Air at 11:40 am and arrive in Tokyo Narita, Japan at 3:05pm the next day (11 hours & 25 minutes). Leave Japan at 5pm and arrive in Seoul, Korea at 7:25 pm (2 hours 25 minutes). We will be staying the night in a hotel in Korea - we'll need the rest!! On Aug 10th we will depart Seoul Korea at 1:05 pm and arrive in Qingdao, China at 1:40 pm (1 hour 35 minutes) For everyone who is wondering Qingdao, China is 14 hours ahead of Mountain Time (13 hours for Central Standard time). I'm excited to finally have the airlines booked, passports are being processed, and by Saturday have the down payment of the treatment sent out. I received an email from a reporter for the Garden City Telegram today asking if we would do an interview with them. So I'll be working on that for the next couple of days that way it will be in the newspaper before the June 1st hamburger fundraiser in Garden City. Brandon has 2 days left of school before he's out for the summer!!

11:47 PM

2008-05-17T00:45:00.000-06:00

We have 2 more fundraisers coming up!! On June 1st there will be a hamburger feast in Garden City, Kansas & another one in Scott City, Kansas on June 13th. More details of the fundraisers will be posted as they become available. So many people in Kansas has helped us & all I can say is THANK YOU!! Hopefully by early next week we will have our airline tickets booked. I spoke to a travel agent today to see if it would be more cost effective to go through them or to book it online. I should know something by early next week. We were told to book the flight as soon as possible. The sailing part of the Olympics will be held in Qingdao so flights will become more expensive and harder to find the longer I wait. I'm still waiting for the mail lady to deliver Brandon's replacement social security card. I need to have that before we can get our passports.

5:45 PM

2008-05-14T12:30:00.000-06:00

Brandon has 7 more school days left before he's out for the summer. We're all grateful for that - he tried to convince us last night that he was going to be "sick" today. He's really getting tired of school so summer break isn't going to come soon enough for him. I don't have enough room on here to list all the people who has helped us but there's a few people that really stepped up by donating money or their time (or both) - and I just want to say THANK YOU!! Of course to our family - we are grateful that we have family & extended family that truly care. My sister in-law Aspen & all the crazy ladies at Peak Vista (you know who you are....Angie & Ayesha). Jill's Country Cafe, My Sister's Kitchen, Coke's Diner and all the staff that helped by donating their time, money, space, & effort in making the silent auction such a success. Denise & Bill King at Big Valley Sod Farm for their support in the auction. Jim Newell & Carl Evans for providing the stage coach & draft horses in the carriage ride fundraiser. Nick, Pauline, Brenda, Dan, Pat, & the ladies at Cowboy Up for setting up the Poker Run - and of course Sufferin' B for supporting our efforts. To the Ellicott PTA for doing a yard sale - Joni, Lois, Carey, Mr. Smith, Mr. Lawerence, The Pride kids, Edna & Tony for making those wonderful hamburgers and everyone else who made the yard sale possible. And of course Meda for being a great supporter, reporter & great friend. You guys have been so wonderful & I can't thank you enough. If I left any names out, please forgive me. I will never forget your efforts......

11:16 PM

2008-05-13T19:56:00.000-06:00

I finally have a blog set up!! Several people have asked me if I would do this so they could keep up with everything that it happening during this wonderful and excited journey. I was going to start this blog right before we left for Qingdao, China however I wanted to record everything that not only happens during the trip but the events in our lives leading up to August 10th and the after effects of our trip. We are less than 3 months away from leaving for China. This week we booked our stay at the hospital. We arrive in Qingdao on August 10th & leave there on September 15th. I'm left hoping that those 36 days will change our lives forever. I'm also nervous!! We have raised $34,827 of the $75,000 needed for the treatment, travel expenses & the hyperbaric chamber. $40,000 in 3 months - yeah that's scary!! Thankfully we have a large group of supporters & without them, this journey would not exsist. So to everyone who has helped us - THANK YOU! Brandon is looking forward to the trip. He asks on a regular basis when we're leaving. He tells everyone including strangers on the street that he has Optic Nerve Hypoplasia & that he's going to China to "fix" his eyes. I do hope that's what happens but any improvement will be considered a sucess.