Derek's Journey

2008-12-15T15:45:00.001-08:00

Sorry for the lack of updates - my daily routine has been pretty repetitive .
I have just been trying to figure out where I want to go to school and what I want to do with the rest of my life . I think I have figured that out- I would like to major in New Media at University of Maine Orono and long term would be to work for a disability magazine doing digital design work.

In October I went to the Kennedy Krieger spinal cord injury unit in Baltimore, MD for two weeks of out patient therapy. While I was there they put together a home exercise program for me. They do a lot with electric stimulation and they use an FES bike a lot . I would love one of those. It is a bike that sends electrodes to your muscles and makes them contract. Kennedy Krieger's philosophy is that they want your muscles ready for the cure when it comes. Because when there is a cure for somebody 20 years post injury who has not kept up there muscles the cure would be use less for them. My mom and I stayed with Nicole & Neal at there house - thank you!

While I was there I met with old college friends and family and others it was awesome seeing all of them. One thing I wanted to accomplish while I was there was to eat at my favorite old eateries. Which I definitely accomplished! One of the weekends we went to Catholic University it was nice to go back and visit.

I got approved to drive so that part is done now I am working on getting a car. I would like Honda element that would be ideal - they are a lil expensive but no more than a van and they are much cooler.
I worked with Jill on my UMO application and got that done. UMO seems like it will be a great place for me and when I went for a visit everybody seemed really nice. There are a few things that I will need before I go the. I will need a new computer and cooking equipment to live on my own. My mom and dad made the trip with me to Orono.

I now work with Meredith Ralston . She helps me do my home program that was sent home with from Kennedy Krieger. Sometime soon Shannon and I are going to Tuscan to visit friends that live out there I can’t wait.

I designed a brochure show casing my photography work - Mark helped me out a lot with that it came out really nice if do say so myself.
For all you crazy Polar Bears out there: Peter Roper is organizing the 4th Annual Polar Bear Dip to benefit Derek O'Brien at Lincolnville Beach on New Years Day at 12 noon . Don’t be late. It only last for a few minutes and it is a sight to see even if you don’t go in. Come watch. Peter Roper can be contacted 236-0074 (home) and 338-7526 (work).

Bye - Derek

Back from Shake

2008-07-23T11:57:00.000-07:00

Camp was great did so much, Ropes Course, Hand Cycling, Kayaking, Red Sox game. At the game I got lost with Dave, a trainer that works for Shake, we ended up getting lost in a sky box seat. It was sick. We got so hooked up.

They wanted to go Kayaking again but I was all set since we already done that so I had a plan to go to Fox Woods. I organized it and it happened. It was an awesome trip. I played three card poker. I love that game.

Matt B., Walter and I went to the ABC which is an outside bar on the weekends. The place is happening. I learn so much from others each year- that's my favorite part about Shake. A mentor Walter order me a set of Ds Brakes. They are a set of amazing brakes and are guaranteed to never move. They're like having a set of crossed drilled rotors.

I worked really hard on making my morning routine independent. I think I have solved some problems. It was great working with Carrie since we hadn't worked together since Spaulding.

Now I need to start thinking what my next step will be. I really need start thinking about Dustin's wedding. I need to see about the Kennedy Krieger Rehab place before I start thinking about school. We will see.

Bye Yall

Update from Camp

2008-07-03T16:57:00.000-07:00

Hello everybody!

Everything is going very well down in Newport. Time is really flying by!

So far we’ve done some pretty awesome recreational activities such as kayaking, hand cycling, going to a rope course, and going to a Polo match. This year I successfully went out in a kayak without tipping over! As for hand cycling, it was a gorgeous day down at the park and we got to test out various hand cycles. Also, this year we got to enjoy the ropes course again. We went on two harnessed activities in which we were pulled up by staff members and brought to a height of 50 feet. It was a great feeling being lifted out of our chairs. Lastly, I went to my first Polo match between Scotland and the US.

During our free time, I have been able to hang out with old participants and meet new ones. We have gone to many restaurants and bars since being here. This year I’ve had to find a happy medium between socializing and being independent. Although we go out to eat a lot, the weekend brunches here are the BEST because Shirley, the house cook, prepares us any food we would like from breakfast foods to lunch foods.

At camp this year, I’ve been very fortunate to work with amazing therapists. For example, it’s been great working with Carrie, my old PT from Spaulding Rehab in Boston. She has not seen me since rehab. The changes I have made have been astronomical! She is very knowledgeable at what she does. This year, some of my main goals include working on making my morning routine independent (from getting up out of bed to going to the bathroom to getting dressed). It’s been going well. I have found that the key to a successful morning routine is problem solving. With Liz’s help, a newly graduated OT student from Boston University, I have made some great modifications to my manual chair. She made it possible for me to insert my side-guards that protect my pants. The best thing about being at Shake-A-Leg is being able to learn tricks of the trade from other participants. You really find out what works and what doesn’t. For example, there are participants here who are working on transferring into and out of their cars! There is a fellow participant who has a Volkswagen Rabbit that has been modified with hand controls, etc, that allow him to drive. The car has been tricked out with rims and it looks pretty SICK! Furthermore, a former participant showed up the other day in his Acura NSX sports car and showed us how he transferred in and out of it. By looking at it, you would never know it was an adapted car.

Sorry for the lack of updates, but I have been extremely busy. Thank you for reading my blog! When I get home, I will be very busy with my brother’s wedding and reapplying for school in Portland, Maine.

Derek

June 16, 2008

2008-06-16T18:15:00.000-07:00

June 16, 2008 update

Project Walk changed its name to Journey Forward. I went to Journey Forward for two days last week with my mom. We stayed at a hotel instead of Dustin's because it was closer and easier. My ultimate goal is to go back there when I get home from camp.

Yesterday with Shannon and Laurie's help I was able to attend a massive fundraiser for Journey Forward in Dedham, Massachusetts. At the fundraiser I was able to sell my photographs that my grandmother and mother helped me prepare. I did very well. I still have left over photos that I am planning to sell at the Bagel Cafe. There were many pieces of sports memorabilia sold, and movie memorabilia too.

Thank you to Shannon and Laurie for driving me down.
Thank you to Pat and his wife. They showed up at the fundraiser.
Thank you Dustin and Mackenzie for showing up.
Thank you Morgan for taking care of me this weekend.

I have been packing for Shake-A-Leg all weekend. I leave for Shake-A- Leg tomorrow morning. I will be there for a month. Shake-A-Leg requires me to pack for a month--clothes, supplies, and many other items.

When I return from Shake-A-Leg I will begin the process of applying to the Photography Department of the Maine College of Art in Portland. They require 20 pieces of artwork done within the past year for my portfolio. The hardest part is not finding 20 pieces, but determining what 20 to choose. You want a variety of images from portraits, to landscapes, to still-lifes.

With the help of Jill Glover, I hope to do updates from Shake-A-Leg. Please make me feel loved and send me lots of mail while I am at camp. My address is:

Shake-A-Leg
Attn: Derek O'Brien, WLT PARTICIPANT
P.O. Box 1264
Newport, RI 02840

Update 6/9/08

2008-06-09T18:00:00.000-07:00

June 9 2008

I started Project Walk right when I got back from China it’s the best thing I have ever done but the worst part is they don’t take insurance. Project walk didn’t care to expand so the Canton board decided to turn it into a new company called Journey Forward. They are hoping to decrease their prices by doing the name change and a large fund raiser. The fundraiser is on Sunday, June 15, 2008, 3 pm to 9 pm location: Moseley's On the Charles, 50 Bridge Street (Rt. 109) Dedham,MA 02026 for more information , call 866-680-5636, attention Dan Cummings, there will be some unbelievable things. Like there are going to be celebrities, and many live and silent auction items. The very awesome silent auction items are as follows: 2 VIP tickets and backstage passes to Bon Jovi, meet and greet with Curt Schilling at Fenway Park, plus 4 tickets, 6 pairs of Celtics Tickets (2009) Manny Ramirez Autographed Bat, TomBrady's signed Patriots's jersey Mike Lowell signed jersey and many many other good things.
They are allowing me to have my own table to sell my pictures. I have been really busy getting pictures ready, matted and framed, with the help of my mother and grandmother. Shannon will drive me down on Saturday to the fundraiser. I have been doing Project Walk for the last 3 months but I can’t go for much longer because they don’t take any insurance. I do Project Walk for 3 hours a day on Wednesdays, Thursdays and Fridays intense physical therapy “training." They said when I got back from China to do really intense therapy this is filling that need. Since attending I have become really strong in my upper body and have got some feeling in my legs.
We stay at Dustin and Mckenzie’s house, they aren’t that far from where it is, about one hour. I would love to continue because it is the best thing I have ever done. I know it works because there are people there who are walking, taking steps.

On Mondays, I still attend the YMCA for pool therapy.

Once a week, I attend hand therapy to work on my left hand, strength. And I am going to Dr. Buckley’s and he works magic.

On June 17, I go to Shake A Leg for a month in Newport, Rhode Island. While I am there I will do various therapies and I learn so much from others and their experiences. I will be bringing down the Ibot wheelchair to Shake A Leg.

My address at Shake a Leg is:
Shake a Leg
Attn: Derek O'Brien
WLT PARTICIPANT
P.O. Box 1264
Newport, RI 02840

A few weeks ago I got my manual chair fixed. It desperately needed it after my trip to China.
I got brand new castors, brand new back rest, brand new brakes; brand new tires that won't go flat, and new push handles. It feels like a brand new chair it really needed the work. I had out grown it. My needs have changed but my chair hadn’t changed. I will try to do an update at Shake A Leg if you want more information about the fundraiser you can email me at dobball40@yahoo.com. BYE

Shake-A-Leg

2008-04-22T11:36:00.000-07:00

Shake A Leg is a camp for people with paralysis. There is one in Newport, RI and Miami, FL. I attend the one in Newport. This is my third summer attending, I will stay down there for a month from June 17 to July 17 at Salvia Regina University on their campus. When we are down there we stay for a month. We stay in the dorm rooms usually by ourselves. Usually the first day is set for getting to know everybody.
Breakfast is always in the common area, and there is no set schedule for breakfast because everybody is doing different things. Lunch is always at noon in the cafeteria on campus. Dinner is at five everyday at the dorm, and it is brought to us.
We do various activities sailing, aquatics, cooking, PT, OT, recreational, life skills, outings, a regatta, counseling, Rolfing, reiki and yoga and many other things.
Sailing is done in Newport Harbor once a week on little JBoats. Newport Harbor is gorgeous and is always loaded with beautiful boats. In our boats you can fit 5 people in each boat comfortably.
Each week we do aquatics. It is done at a local Boys and Girls club. We go in small groups so we can have at least two therapists to one client ratio. When we are there I do various exercises in the water like weight bearing, arm exercises and other things. We do this once a week.
Every Friday consists of a cooking group. We cook a meal together and that works on our dexterity. It’s a good time; we get to eat it after make the food. When cooking we get to use various adaptive cooking devices. Each week we have different themes such as pizza day and many others. We talk about nutrition facts of the different foods.
Every week we work on PT two to three days a week. We do various sitting balance exercises to help strengthen my core, as well as mat work. We do work at their gym to help strengthen our muscles in our upper body.
In OT we do a lot of work when it comes to dressing, bathing, etc. and we work on different techniques. They helped me learn how to tie my shoes. They have all the toys. Adapted tools like button hooks, shoe horns, sock aids, etc.
The recreational activities consist of various wheelchair sports like wheelchair basketball, hand cycling and other chair sports. They like to expose us to a variety of different sports out there.
Various life skills are taught to all clients. They teach us how to adapt to life in a chair. They teach us ways to live independently. They do that by bringing in others that give their own personal experiences in living independently. You learn the most from others and their experiences. Their advice is better than what you learn at rehab.
The outings are always a good time. We go to a Red Sox game. It’s always a good time. We went last year. They are no green monster seats but they’re still good seats. We go to a local ropes course. That’s always a good time, and we do a couple activities there. It’s nice getting up in the air out of your chair. The outings are really fun.
Each summer we do a regatta. It’s a two day regatta on 30+ ft boats. These are world renowned race boats. It’s fun being on race boats even though I’ve never understood how it works. I personally think we are all winners. At the end of the regatta there is a large fundraising dinner where we all come together dressed up.
We also do various therapies that aren’t traditional such as massage, rolfing, reiki, and yoga. These therapies are as important as the others because they bring each person a sense of peacefulness. There is a 3: 1 therapist to client ratio. This provides us with adequate amount of attention.
Its great being in downtown Newport because it makes going out really easy and fun every time we go out. It seems like there is something going on every night. We usually go out in a large group. We go to a place that is very accessible because it has a deck outside.
Shake A Leg is the best place for people with paralysis. There really needs to more places like it out there.

Project Walk- Derek's Update

2008-04-01T07:43:00.000-07:00

Where do I start? Project Walk is the best thing I have ever done. Project Walk is a really intense physical therapy program, like nothing I have ever done. It’s great. I feel if I am going to get anything back it is by going there.

There are currently three locations California, Seattle, and Boston. I really want to go as long as possible, but they don’t take insurance so I am not sure how long I can go. I will go until I can’t go anymore. Hopefully, I can go longer than shorter.

I learned about the Boston site through their web site. The guy who started the Boston site is named Dan. He is a pretty amazing guy. He can walk now with a walker. Before he did Project Walk in California, he had very limited movement in his hands and was confined to a chair, but with hard work and determination to get out of that chair he made it. Dan got hurt diving off a boat into shallow water and broke his neck. He did all the traditional therapies with minimum success similar to me. He knew if he was going to get better he would have to do intense therapy. That’s when he decided to go to Project Walk in California, and he went there for 5 years. But now he is out of a chair, living on his own, and driving. Even though he can walk now he still works to maintain what he has gotten back and to get stronger. He still has minimum hand strength but enough to live on his own. He is a really good motivator because you can see there is light at the end of the tunnel. Dan is at the Boston site everyday. He is a liaison for prospective clients.

We made contact with PW before China to make sure I could go there when I got back. Bieke Biotech said to get intense therapy when I got back from China, and this definitely is intense. So when we got back we didn’t waste any time getting in touch with them.
The hardest part is finding funds for it. They do not take insurance because they don’t want to be regulated on what they can do. They know some people take longer than others and insurance companies want to see instant progress. At PW they know that some may progress faster than others.

I had to have a bone density test done before I started because they do a lot of weight bearing exercises. I did that at home around here. That wasn’t too invasive on me.

The next step in the equation was how would I get down there and where would I stay? It is very convenient that Dustin and MacKenzie live near PW, 45 minutes away so we would stay with them. To say thank you for letting us stay with them, we bring them down dinner. With Shannon’s help, she drives me down, takes care of me, and takes me to PW. It works out great.
I am at PW for about 3-4 hours, 3 days a week. When I am there it is non-stop from the beginning to the end. They don’t give your muscles too much time to relax. They like to keep them fired up.

I do many different exercises there. They do a lot with your core because you need your core to walk.

They have an FES bike which is a bike that helps move your legs with electro- stimulation. Your legs feel fatigued after it. I also use their power plate. It is a machine that sends an intense vibration through your whole body. They get me standing on it to get full potential out of it. The Russian astronauts invented it so they would not loose bone density while in space. It’s a pretty awesome machine. I do a lot on their total gym. The total gym is a board on an incline so I can lie on it and do leg presses. We also do various core exercises because you need that to walk. I do the hand bike, but I do it standing so it is much more intense. We do various mat work exercises, the standing frame, and many other things.

There are thirty-seven people in the program currently, people who go there and also people doing the home program. Everybody is in different stages.

I see some of the same people each time and some new ones. There was a client there who was going to China to the same hospital I went to so he had a bunch of questions for me.
I’ve meet some pretty neat people. There is a girl there from Pennsylvania. She was in a car accident, and her goal was to walk down the aisle for her wedding. She was able to walk with leg braces under her wedding dress. She said there was not a dry eye in the church. She has a Newfoundland as a guide dog. There was a guy at Shake A Leg, who has a dog, but it’s no Newfoundland.

I am going back to Shake A Leg this summer. I can’t wait. I am so excited. It should be a good time. I will keep you informed on how things are going.

Bye –D-

Update 3/27/08

2008-03-27T07:11:00.000-07:00

We have finally gotten back into a routine with a new schedule. Derek attends Maine Center for Integrated Rehap in Rockland on Monday mornings. This is the same place that he had been going for rehab for the past year and a half. He goes for speech therapy and recreational therapy. When he returns home at noon, I take him to the Camden YMCA and help the therapist give him aquatic therapy in the pool. We have been working on strengthening and simulated walking in the pool.

On Tuesdays at noon he goes to Pen Bay Physical therapy for OT to work on strengthening his hands and getting more use out of them. From OT we go directly to the YMCA for another session of aquatic therapy.

Alternating Monday and Tuesday late afternoons each week, Derek works with
Jill Glover on cognitive work and writing. Thank you so much Jill for all your help.
We also fit in a visit with Dr. Buckley, the chiropractor who has been so generous to donate his time for Derek, on either Monday or Tuesday. Thank you Dr. Buckley.

Mondays and Tuesdays are very busy days fitting everything in so that Derek can attend Project Walk on Wednesdays, Thursdays, and Fridays. Derek started Project Walk three weeks ago. Shannon drives him down on Wednesday so that he can work out from 2:30 to 5:30. They then drive to Dustin's in Marlborough and spend the night. They have to get up early to commute back to Canton to work out from 8:30 to 11:30 in the morning. They again commute back to Dustin's for another night and back to Canton Friday morning to work out from 8:30 to 11:30. They head back home to Maine after that. I encourage everyone to go on Project Walk's website and check it out. The website is www.projectwalk.com Derek loves it and we all feel that it is the best thing that we have done for him other than going to China to try the stem cells. The sad part is that they don't take insurance, so Derek will probably only be able to go a couple of months. I am not going to go into detail about Project Walk because Jill is working with Derek on writing another article to post on the blog with his version of what he is doing in Project Walk.
We have noticed that since we got back from China and started Project Walk that Derek's memory has gotten a little better, but the most improvement that we have seen is his energy level and motivation. He now has the energy to stay up all day and is motivated to try to do things on his own. This is a big improvement.

Keep looking for Derek's article on Project Walk. Thanks for all your support.

Kathy

Derek's story of China

2008-03-17T14:29:00.000-07:00

The following is Derek's recollection of his trip to China. He has been working very hard with Jill to remember and write this himself. He hopes that you enjoy it. Derek has started Project Walk, so keep watching for his messages and updates about it.

My dad was doing some research on the internet looking for a place for me to live. Stem cells came up as an option so we figured that we had nothing to loose. My dad found a company in China doing stem cells and bone marrow transplants. We made contact with Beiki. We thought we had everything to gain. Nicole did follow up research to make sure it was legit. My mom made the travel arrangements. We had to get immunizations prior to leaving. My mom and I went to Augusta to get visas. For the next couple of months we packed all my medical supplies, clothes, and some food. We didn’t bring many clothes because the majority of the space was for medical supplies. Nicole brought propel packets to put in water. To help us fund the trip since insurance won’t cover it, we did some fundraisers.
On January 10th my mom, sister, and I embarked on a journey of a lifetime. So we set forth to China for a chance I may get something back from stem cell injections. We flew out of Portland to JFK where we met up with Nicole. We stayed there for several hours until our plane left for China. I was able to find a bench to lie down on and rest. It was time to board the plane for the 13 ½ hour flight. Everything was fine with the flight. Except for the seating, it was cramped. Being our first real international flight we didn’t know that you had to find a row all to yourself so that you get your own to lie down. So there we sat all three of us, in one row, the only people like that on the plane, cramped. We made it there! The food on the plane was horrible; it was rice and beef or fish. Why would you serve something that smells that bad?
We finally made it to China, and they have no concept of handicapped people. They had no isle chairs so they had to physically pick me up and carry me on and off planes. We finally made it to Shenyang Airport completely exhausted, and we met up with Tony, our Chinese interpreter who works for Beike. He took us to the hospital from the airport. Beike is the company that we went through. The trip to the hospital took about an hour. It was dark so we couldn’t see anything.
We got to hospital late, and we had no desire to explore, just sleep. The room was very sparse, not luxurious, definitely no Best Western, but we weren’t there for that. The room came with 3 beds, TV, DVD player, water cooler, hot plate, microwave, card table, two chairs and a bathroom.
The first day consisted of many evaluations: EKGs, MRIs, x-rays, and meeting with doctors. We met with Lucy who’s another Bieki employee who would help us the next month.
The next day we got a good look at the hospital which is huge and only three years old. That day I got my schedule for the month. It consisted of acupuncture and two sessions of PT a day. I had that everyday until my surgery.
I had my first stem cell injection in my lumbar on January 15. After the injection I had to lie still for 4-6 hours on my side so I didn’t get a spinal headache. (A spinal headache is a migraine type of headache marked by severe head pain lasting several hours or more.) I then had my bone marrow taken out and they let that grow for seven days before they injected it in me during my surgery.
The reason I needed surgery was because my spinal cord had adhered to the side wall of my spinal column, not letting my spinal fluid flow freely. I also had a cyst that was putting pressure on my spinal cord that needed to be drained. It wasn’t that hard of a decision because I knew if I didn’t have the surgery the stem cell injections would be for nothing.
Before my surgery Nicole went to Beijing to see her long time friend Whitney who now lives there and teaches English with her boyfriend. They got to catch up. She took Nicole to lots of different places like the Great Wall. The Great Wall is so high up there is little oxygen. You can’t even use a lighter. I gave her my camera to take pictures for me. She ended up having Whitney’s boyfriend take the pictures because the wall was really steep, and Nicole is afraid of heights!! Whitney was able to get us some good American food. Whitney came a few days later to visit us. It was nice having somebody around who spoke Chinese. Nicole came back the day of my surgery.
We were there for ten days before the surgery. So I had the surgery, and it went fine. They put me under so I didn’t remember it. After the surgery I had to stay in the ICU for two days with no food or TV and only visitors twice a day for a short period of time. Thank God I was only there for two days. After those two days I went back upstairs, and it felt real good to be back there.
When I went back to the room, I had to stay there for ten days with no therapy or acupuncture. That was extremely boring. We watched a butt load of DVDs. Ben and Paul, two Australians who were there having stem cells organized an outing to go to the Antique market to buy cool old Chinese artifacts. Mom and Nicole went with them. They went to Strange Slope which is a hill that pulls you up backwards. I wish I had got to go but I was still laid up. They also had a traditional Chinese lunch.
The last week was the beginning of the Chinese New Year. They set off huge fireworks for ten days straight all day and night. It was pretty for the first few days then it got annoying. It sounded like a war zone. During the New Years everything shuts down. The reason why we got therapy during the holiday is because we made fuss. The only people who got therapy were Beike clients.
Everybody goes home during the New Years to hang out with their families.
Lucy the Beike employee went home and celebrated the New Years and made dumplings and set off fireworks. When she came back she brought us dumplings, and they were real good. We asked what was in them but she wouldn’t tell us what meat was in them. They tasted like sausage but maybe it was dog.
It took us some time to pack because we had a lot of stuff, but we left a good amount for others. That’s what you do is leave stuff for others.
We met some pretty neat people there, two guys from Australia who were there by themselves. They were two strong individuals who came there by themselves. There was a Canadian couple and a family from Arkansas as well. When we left we gave them stuff that we didn’t want to bring home.
The day finally came and it was time to go home. The trip home took 31+ hours. It seemed like forever. We had some major layovers, but we made it back. Nicole went her way at JFK. It was nice coming back, and I got my own row to lie down.
When we got to Portland, my dad met us and took us home.
So far I haven’t seen too much from the stem cells, but they say to do really intense therapy and give it six months to see what you get back, so now that’s what I am doing.
Thank you Nicole and Mom and many others who helped.

Message to Elizabeth

2008-03-11T16:07:00.000-07:00

Hi Elizabeth,
We would be happy to exchange information with you about China. You can email us at
obandsons@roadrunner.com and we can exchange phone numbers. Thank you for the well wishes.
Kathy

Update 2/25/08

2008-02-25T07:57:00.000-08:00

Hello everyone,
It is so great to be back home. We are getting back into the old routine again. Derek has been having a lot of evaluations again to get services started again. Thank you to Jill Glover for coming over Friday to start working with Derek cognitively again. She is having Derek try to remember as much as he can about the month in China and then he will write a report about it. Hopefully when he gets it done, we will be able to post it on the blog so that you can all read about what he remembers.
We did find out what the white mass on the MRI was. When they implanted Derek's bone marrow stem cells at the time of the surgery, they put them in a glue like substance to adhere them to the spinal cord. The purpose of this is to give them a better chance to be absorbed directly into the spinal cord instead of just be flushed through his system.
Derek has not seen any changes yet, but they say to allow six months to see any changes. Time will tell.
Thank you for all your continued thoughts and prayers.
Kathy and Derek

Update 2/12/08

2008-02-12T11:50:00.000-08:00

Hi,
We made it home safe and sound. It was an extremely long trip. I am running on a couple of hours sleep, but Derek got 12 hours of sleep after we got home. On the 13 1/2 hour flight, Derek got a row with three seats so he got to lay down and sleep a lot of the flight. I am trying to stay up all day so hopefully I will be able to sleep tonight. It will probably take us a couple days to change our internal clocks back the 13 hour difference. I've got the months worth of mail sorted, the suitcases unloaded and the laundry started. Getting caught up will take a few days, I'm sure.
We are looking forward to a dinner of meat, potatoes and vegetable tonight and being able to sit at a table and chairs to eat. We got a very warm greeting from the two dogs last night when we got home. Lots of kisses. Thanks again for everyone's support.
Love, Kathy and Derek

Update 2/10/08

2008-02-10T03:43:00.000-08:00

Hello,
We are pretty well packed and waiting for 8:00 when they turn the hot water on so we can all shower and go to bed as we are leaving to early to get hot water in the morning. Tony is taking us to the airport at 7 am. We have 31 hours of traveling before we will be home. This has been an amazing journey. We would like to thank everyone who helped make this possible for Derek and all of you who have followed us by way of the blog. We will continue to pray that Derek will see some positive results in the months ahead. Whatever the outcome, at least we can say that we tried. We’ll write again after we get home.Love to all, Derek, Kathy and Nicole

Update 2/9/08

2008-02-09T01:19:00.000-08:00

Hello,
Our time here in Shenyang is drawing to a close. We are now counting hours not days. Tomorrow we will pack up and be ready to leave for the airport early Monday morning.
Derek had some therapy today and more IVs. He had his last spinal cord stem cell injection this afternoon at 4:00. He has to lie still for four to six hours now to avoid a spinal headache.
We got the copies of the MRI images that were taken yesterday. Tony read us the Doctor’s report that said that there were no changes from the MRI that was taken after we arrived. This immediately sent my head into a tail spin. I needed more information to rationalize why we had had the surgery in the first place. I questioned Tony and Lucy about having Derek’s surgeon look at them and was told that he was on vacation for the holiday and would not be back until Feb. 12th after we had left. I dug deeper to find out if there was a Doctor on call who could compare the two MRIs. Lucy found a Doctor downstairs who said that he would look at them, so Lucy, Nicole and I headed down with images in hand. We were told that the cyst and adhesion were gone, but there was a white mass pushing on his spinal cord. We were told that this was the bone marrow stem cells that were injected at the time of the surgery. The Doctor said that they are not nerve cells when they are injected and that with time they would either turn to nerve cells or die. He said to have a follow up MRI done in three months. He showed us where there was little spinal fluid around his cord and said that there was swelling of the cord. We knew about the swelling factor after surgery from what we had learned after Derek’s initial surgery after the accident. I have already been on the internet emailing another Doctor to get more information about the stem cell mass, why the stem cells aren’t absorbed into the blood stream, and where in the United States do we go for a follow up MRI where the Doctors will be familiar with stem cell procedures and be able to evaluate the three MRIs.
On a more positive note: Another American patient who has a spinal cord injury from a gun shot wound was transferred here from another hospital in China where he had had stem cell treatments for a month and then came here for surgery, is already seeing his leg move. The one thing to remember is that everyone’s spinal cord injury is at a different level, different severity, and they are at different time frames out from their injuries. Any improvements are a big boost to all the patients and families.
We said good bye to Lucy today. She has the next three days off to celebrate the holiday with her family. She was a big help to us and was a delight to be around. She will be missed around here the next couple of days.
We’ll write again tomorrow before we start our journey back to the states.
Love to all, Derek, Nicole and Kathy

Update 2/8/08

2008-02-08T04:16:00.000-08:00

Xie Nian Kuai Le (Happy New Year),
The celebration is continuing here along with the fireworks. There is one therapist on duty during the holiday. Derek had therapy twice today. He had an MRI this afternoon to have a comparison of his spinal cord before and after the surgery. We will get the films back tomorrow. Tonight when he was getting his IV in his foot, the fluid stopped dripping. The nurse was trying to figure out what was wrong and determined that the needle had moved and she would have to put a new one in. The positive side of this was that Derek said that he felt pain in his foot, like throbbing. This is a new and positive feeling. He has also been sweating a lot since his surgery and the stem cells. We have heard from several people that this is a positive sign also. Paul had also commented about how much more he sweated after his surgery and stem cells and he gained movement in one of his feet while he was here. We are keeping an upbeat attitude that these are positive signs that the stem cells are working to gain nerve regeneration.
We are getting excited about coming home in a couple of days. We will arrive back home around midnight on Tuesday.
Love, Derek, Nicole and Kathy

Update 2/7/08

2008-02-07T04:24:00.001-08:00

Xie Nian Kuai Le (Happy New Year),
The fireworks are still going on. Last night was one continual bang. We videotaped them to try to show people at home what it was like. Midnight had the most. They were everywheres you looked. Within five minutes after midnight, you could not even see the ones closest to us because of the smoke in the air, but the noise continued. Around 10:30 last night, the one nurse who was on duty and Chicken Little, who is Gregg’s Chinese caregiver, brought us in dumplings. They were good. We looked up on the internet and found that dumplings are the traditional food to celebrate the New Year in northern China.
The only thing that went on today was Derek getting his bandage changed and receiving IV fluids. Lucy brought us fried dumplings today for lunch. She told us about how she celebrated the New Year. She told us that all her relatives gather at her grandmother’s house. She and some of relatives spent three or four hours making dumplings, some watched TV, some play cards, and then they all go out side to set off their fireworks. We had read on the internet that is custom for the children to stay up all night so that the parents will have a long life. We asked Lucy if she had and she said that she had and was very tired today. She is going to bring us more dumplings tomorrow. They were some of the best that we have had here. Tomorrow will be the last day that we will see Lucy as she has the last three days that we are here off for the holiday.
We are counting the days until we return home. Thanks to everyone for the love, support, prayers, emails and comments. They have helped us get through this leg of Derek’s Journey.
Love, Derek, Nicole and Kathy

Update 2/6/08

2008-02-06T02:54:00.000-08:00

Hello Everyone,

Xin Nian Kuai Le (Happy New Year!)

Derek had two physical therapy sessions this morning so that the one therapist that was on could catch the train at noon to go home for the holiday. Lucy and Tony are taking turns working three days and having three days off for the holiday. Even though the fireworks have been going on day and night for a week and a half already, tonight is the big night. They will go all night, but midnight is supposed to the highlight. We will watch them in a circular room near the stairs, because of the panoramic view that we will have. We will be able to sleep in tomorrow morning because there will be nothing going on.

We received an email requesting the address for Key Bank:

Derek O’Brien Trust
Key Bank
141 Elm Street
Camden, ME 04843

Love, Derek, Nicole and Kathy

Update 1/5/08

2008-02-05T00:20:00.001-08:00

Hello Everyone,
Derek got to go to acupuncture yesterday, but not therapy because he still had his stitches. He got another spinal cord stem cell injection last night.
Ben and Paul left early this morning to start their journey back to Australia. We all exchanged contact information last night so that we can stay in touch. We all miss them already. It is so quiet around here without them. They had such positive attitudes and were a boost to everyone.
The doctor took Derek’s stitches out this morning. The top part still hasn’t completely healed, but I think that the hair dryer on it might be helping. He had acupuncture again this morning and got to go to physical therapy twice today. Today is supposed to be his last day of Ivs. We will wait and see.
The hospital is pretty empty this afternoon because the Chinese New Year festival begins tonight. Tony took Nicole and two other patients family members to Wal Mart for any last minute food or supplies. It is the middle of the afternoon here and Wal Mart is basically the only store still open. We were told that the stores and restaurants will be closed for three days. Everyone has to prepare their on food for the next three days. The staff is on a skeleton crew for the next week during the festival. There is no acupuncture until the 10th, no reflexology for the rest of our time here, and a couple of therapists on each day after the 7th.
When talking to Kirshner, she said that the pain in Derek’s arms are from the stem cells. Nerve pain is the first sign of nerve regeneration. Hopefully the pain will subside and we will begin to see some improvements. The increase in leg spasms is also a good sign. Leg spasms are nerve signals that are misfiring coming from the brain through the spinal cord. Since his surgery and the stem cells, he has had more and stronger ones. They say that this is good because more nerve messages are getting through; they just aren’t controlled movements. Hopefully they will be something to work with when we get home and go to Project Walk in March.
Love, Derek, Nicole and Kathy

Update 2/3/08

2008-02-03T19:17:00.000-08:00

Hi,
Ben had been planning an outing for the past week. He had gotten a list of all the patients and family members who were interested in going. He got Tony to hire two vans with drivers to take us to the antique market, a temple and the strange slope. Nicole and I were going to join them at 9:00 this morning. Derek was still on bed rest with more Ivs to be given today. When we were about to leave the room, Sid, a representative that was sent by Beike, came to our room to ask about our concerns that we were having about Derek’s Ivs, his wound not healing well and about not getting any therapy while the Chinese New Year celebration was going on. At the same time, the doctor came in to look at Derek’s incision and took out a few of his stitches. The rest of the group was patient while we took care of these issues. There were three patients in wheelchairs, one Chinese caregiver, three family members, and Tony. We were set to leave when Kirshner and Alf from Beike arrived and decided to go with us. Kirshner lives in the United States and Alf is from the United States but now lives in China. He is the camera man and translator for Kirshner while she is here.
We went to the antique market first. It was like our flea markets at home. Your barter with the salesperson. Once you bought one item, other salespeople would swarm you with similar items. We spent quite a while here and everyone bought a lot of interesting items.
Our next stop was the temple. Tony told us the history of this particular temple. We watched the ceremony that they do to pray. The monks live at the temple. Tony took Nicole and I upstairs to another temple where we paid 10 Chinese dollars for Nicole to find out her fate. You meditate about what ever you want then shake a canister of sticks until one falls out. The monk reads the number on the stick and then you pick a corresponding numbered paper off a wall. You then go downstairs out of this temple into another building where they interpret your paper and your fate. They told Nicole that Derek needs to heal naturally. Be patient; he needs time.
After leaving the temple, everyone was getting hungry. They drove us to a Chinese restaurant where we all got to experience a traditional Chinese meal. We all sat around a round table in a separate room with a large lazy Susan in the middle. They kept bringing us different dishes. We ate with chop sticks and you just keep turning the middle and picking what you want to eat. It was a lot of fun and a great experience.
After lunch, the group was going to the strange slope, which is a magnetic hill. Nicole and I along with Gregg, his mom and his caregiver decided to go back to the hospital instead. It was the middle of the afternoon already and we decided we should get back and check on Derek. We brought everyone’s purchases back with us. We found Lucy holding Derek’s leg down while he was getting an IV in his foot.
When the others got back to the hospital, Kirshner and Sid came in to check on Derek. Kirshner tried to find a useable vein in Derek’s arm for the nurses to try tomorrow. He has two more days of antibiotics and nerve growth Ivs. She also looked at his wound and got the doctor to come in to clean the wound and change the dressing. She told the doctor that he was to take the bandage off twice a day and we were to dry it with a hairdryer. I didn’t bring one because I had no room for it, so Nicole and I are going to Wal Mart to buy one. Sid also worked it out with the therapists so that Derek will get physical therapy twice a day while the New Year celebration is going on other than on the 6th which is the first day.
Love, Derek, Nicole and Kathy

Update 2/2/08

2008-02-02T01:42:00.000-08:00

Hello everyone,
We apologize for not getting an update for your yesterday. The past two days have not been the best for all of us. Derek has been in a lot of pain and he doesn’t handle it well. The top of his incision is not healing well. We have had them clean it everyday and put a clean bandage on which comes off within a couple of minutes of them putting it on. They don’t routinely change bandages. You have to request a clean bandage and then they contact the doctor to come and change it. For some unknown reason, he has developed pain in both elbows. We don’t know if it has anything to do with the stem cells or what. We were told by one patient that pain is the first thing that you get back. Why in his elbows, we don’t know. His arms hurt because of all the IV pokes. We have had a lot of disagreements with the nurses and staff the past two days. They insist that they have to put new Ivs in every day. Today they took the one out that was in yesterday without even trying it, put a new one in after several tries, took it back out this afternoon, and then two hours later came in to put another one in just for one bottle of medicine. The past two days Derek has been giving the nurses a hard time and refusing to let them shave him or poke him any more. From what the other patients have told us that have had surgery here, is that he will have to continue to have Ivs every day until he leaves. I don’t know if Nicole and I can play referee for nine more days. We aren’t making many friends with the staff at this rate.
To make things more frustrating, yesterday Tony and Lucy told us that they had changed Derek’s last two stem cell injections schedule. He was supposed to get one last night and one next Tuesday. But because of their spring festival, he will get one next Monday and one on Saturday the 9th. We were also told that there would be no acupuncture or therapy from Feb. 6th through Feb. 13th. This didn’t make us happy because we will have to sit here for the last week just waiting for the last injection with nothing to do. The stores and restaurants are all closed for the holiday. We feel that Beiki Biotech, the company that we scheduled this with, should not schedule the patients to come for the week of the festival. We all paid a lot of money to come here, along with the time off from jobs, and the distance that we had to travel to get acupuncture and physio here that we can’t get at home; only to find out that one week is wasted doing nothing. The other American family feels the same way. We were told that a representative of the company will be at our hospital in a day or two. We are hoping to talk to her, so hopefully this won’t happen to other families next year.
Ben just came in to show us what Gregg, the American from Arkansas, bought him and Paul as a going away present. He ordered them their supper. They had chicken heads, chicken feet and silk worms. They were so gross to even look at and they actually ate some of all of them. We were squirming just hearing the description of what they were like and what they looked like. Yuk!!!
Love, Derek, Nicole and Kathy

Update 1/31/08

2008-01-31T04:21:00.000-08:00

Hello everyone,
Derek had a really bad headache all last night and a good part of today. We treated it with medicines hoping that they would take care of it. When the girl that does reflexology came in, we asked her if she could do anything for his headache. She showed us where the pressure point on the big toe is that controls everything in the head. She worked a lot on this spot. The doctor came to see him about the headache, but didn’t seem to have any advise or to be concerned about it. He did say that we could get him up in his wheelchair after he was done with his IV fluids. The doctor said that he would take the stitches out on Feb. 3rd or 4th. He wanted Tony to talk to the therapist about doing therapy only on Derek’s legs at this point. The therapist said no therapy until the stitches are out. We got Derek up in his chair before supper and he has spent a couple hours in it. He does keep it propped up on a suitcase to recline, but at least he is out of bed..
Nicole had brought a puzzle from home, so we found a small table to bring into our room to use. We finished it tonight. It gave us something to do all day. I wish we had brought more now.
Ben is planning an outing on Sunday to go sight seeing. I think that he is going to have to rent two vans because of the number of people interested in going. Derek won’t be able to go because he will still have his stitches and will still be on bed rest.
Questions and Answers: No we won’t be participating in the New Year celebration other than watching the fireworks from the hospital. The festival goes on for a week or more. Everything closes for at least a couple of days. The doctors say to give it three to six months after the stem cell injections to see what you might get back.
Love, Derek, Nicole and Kathy

Update 1/30/08

2008-01-30T05:56:00.000-08:00

Hello everyone,
Another day down. Another day of IV fluids. Derek was in a lot of pain all night and today. The doctor came in at noon and changed his bandage. He said that it wasn’t infected, but the top of it still bleeds some when it is cleaned and into his bandage. The doctor said today that he cut away the old scare tissue and pulled together new skin to sew together. The old scar was quite wide, so this might explain why it hurts so. We asked the doctor if we could get him out of bed and up in his wheelchair for a short time as we thought that a lot of the pain might be because he had laid in bed on his back for eight days. He said that it would be alright. He also said that the stitches would be in for 12 days.

This evening, we got him in his wheelchair for a while. We had to use an ace bandage to strap his chest to the back of the wheelchair and prop the wheelchair up on a suitcase so he could recline. He says that it is hard for him to hold his head up straight. His spasms are awful. If you just touch or move any part of his body, his legs spasm out of control.

The Chinese New Year doesn’t begin until Feb. 5th, but the fireworks have been going off since last Sunday. They have taken a ban off on fireworks, so that they are legal to set of any place they want to. We have seen the stands set up along the streets selling them. We are talking real fireworks like the displays that we see on the Fourth of July or fairs. They shoot them off all day long rather you can see them or not. During the day just so they can here them bang. Tonight was the worst so far. We have been able to look out any window of the hospital and see them going off all over the city at the same time. They are in every direction. It has been going on all evening with no break. Whitney told us that the real fireworks start at midnight on the 5th and will go all night. By the way it has been all night, I don’t think that they are going to let up until the end of the festival. I don’t know how we are going to get any sleep the next week and a half.
Love, Derek, Nicole and Kathy

Nicole's Trip to Beijing Part II

2008-01-30T05:27:00.000-08:00

A picture of our "hot pot" dinner

Whit and I at the Great Wall

I awoke on Monday morning to find out that we would be going to a small Korean restaurant for a late breakfast before heading out to the Great Wall. The restaurant was basically a small concrete walled room with a few tables. Erika, Dan, Whitney, MMX (Whitney’s boyfriend) and I all had the same thing. It came in a very hot black bowl that had rice on the bottom, piles of carrots, mushroom, something that tasted and looked like pickled bark, a spicy red paste and then a partially cooked egg on top. The dish is served piping hot so you mix everything together really fast and the egg proceeds to cook. Other than the pickled bark the meal was hardy, warm and generally satisfying.

We left the restaurant and piled into MMX’s car to head to the Great Wall. The area of the wall we were going to was about an hour and a half away. We traveled through many small towns and relatively small cities on our way. The thing that kept popping up was these brightly colored pieces of exercise equipment in small park areas. It seamed like every town had an area like this. None of the machines were electric but there were elliptical like equipment and such. Whitney said that mostly older adults used these areas. I would love to see the United States install areas like this in every community. Gym memberships are very expensive and this makes exercise equipment available to everyone.

When we arrived at the area of the Great Wall we were going to walk there was a woman with a camel in the parking lot. I was about to pull out my camera to take a picture when Whit informed me that you have to pay to take a picture. That was my first indication that we were about to enter a very “touristy” area. When you exit the parking lot you have to walk up a hill which is really a rather long row of vendors selling everything from hats, mittens, and souvenirs to quilts and snacks. When you get arrive at the top of the first hill you pay 40 RMB ($5) for a ticket to ride a gondola to the top of the mountain. After purchasing our tickets we made our way up the second steep hill to the gondola entrance. All five of us squeezed into the car and made our way up, past the tree line, to the very top of the mountain. When we stepped out the Great Wall was directly in front of us. It had begun to snow and the scene was truly breathtaking. The wall ran in each direction as far as we could see. We climbed the steps in font of us onto the wall itself. Along the wall there are small “watch towers” interspersed. We walked through the first one and when I came to the stairs on the other side my stomach did a flip flop. The stairs appeared to be straight down and on either side there seemed to be nothing but steep mountain sides. Whit thought we may have to turn around and go back because my case of vertigo was so severe. I was able to make my way down the stairs with MMX holding one arm and Dan holding the other. I handed over Derek’s camera to MMX so that he could take pictures of the wall because I was afraid to look. I always thought the Great Wall was relatively flat, I was so wrong! You are basically climbing mountains with steps built into them. After about twenty minutes I regained my composure and was able to enjoy the scenery. We climbed up and down, up and down for about 3 miles until we came to an exit stairway. At the bottom of the stairway there is a giant slide you can take to get down the mountain. Unfortunately, the slide was closed for the winter so we were forced to take a not-so-new chairlift down the mountain. This was probably more frightening than my initial shock at the beginning. The chairlift, Great Wall and gondola form a triangle so we got off the chairlift in the same location we got on the gondola. We made our way back to our cars which lead us past the vendors (who spoke English very well). We piled back in the car to head back to Beijing.

When back in Beijing Whit wanted the five us to go to “hot pot” for dinner. We went to a large shopping area and entered a glass elevator on a sidewalk that took us into a very nice restaurant. There was no wait but Whit and Erika pointed out that if there were a wait the restaurant has a place where you can play games or even get your nails done while you wait for your table.
We sat a large table and the wait staff brought us each our own aprons and placed covers over our jackets and purses. I new I was in for a new experience. In the middle of the table were two built-in boiling pots. I was informed that one contained a very spicy broth and the other a clear mild broth. MMX ordered for us. Fairly soon after plates of thinly sliced beef, lamb, cubes of beef, lotus, sweet potato and lots of other veggies started to appear. Everyone just picked what they wanted, choose what type of broth to cook it in and let their stuff cook in the broth for a few minutes. Then we used our chop sticks to pick out our favorite meats and veggies to eat. Just when I would think we were done another plate would appear. Also, there was a never ending supply of watermelon that was delicious! When we had finished the meat and vegetables one of the waitresses came to our table with eggs. You pick which broth you want her to crack yours into. Then about seven minutes later you fish out the egg with your chopsticks and have a perfectly cooked poached egg. Just when I thought we couldn’t possibly finish another bite the noodle man arrived. He starts out with a small piece of dough and proceeds to do what looks like rhythmic gymnastics while stretching the noodle. In the end the noodle is about ten feet long and it has never touched the ground. It is quite the show! The noodle is broken into pieces and cooked in the broth. All totaled we probably spent over three hours at the restaurant. It was definitely one of the most unique dinners of my life. After such a long day of climbing the Great Wall and a huge meal I was ready for bed. We headed back to Whitney’s for the night. The next day we were headed to Silk Street for shopping…

2008-01-29T03:55:00.000-08:00

Lacey,
You can email the pictures to Derek's website: dobball40@yahoo.com

Update 1/29/08

2008-01-29T03:17:00.000-08:00

Ne Hao,
Once again this morning started with four nurses trying to find a vein to put a new IV in Derek. Followed up by a day of IV fluids, one bottle after another. He has gotten a foot message and reflexology in bed the past two morning.
Lucy took me by taxi around 11:00 to the hotel where Nicole and Whitney were staying on Middle Street. We went into one store and Whitney helped me make a couple of purchases. Shopping just isn't fun here. Then it was time to say good bye to Whitney. We were really sad to see her go. Whitney took a taxi back to the train station for her four hour train ride to Beijing. Nicole and I continued down Middle Street to get a taxi back to the hospital. On the corner where the taxis wait, we found a wonderful bakery. It was the cleanest place that we have been in since arriving here. It was a tiny shop, but full of wonderful food and pastries. Some of the desserts and cakes were beautiful works of art. We went in because we saw bread in the window and we needed some. We bought two loaves and had them slice it. As soon as we got back to the hospital, we had to try it. The slices are thick and taste just like fresh baked croussants. Deliscious!!!
We just spent the rest of the day watching movies, picking up the room, and Nicole took a nap. We spend a lot of time talking about food that we can't wait to have once we get back home, and how much we can't wait to get home. We are already talking about the long flight home and how we don't want to sit in JFK in New York for 8 hours before we can leave for Portland.
Not much to report, but we'll write again tomorrow.
Love, Derek, Kathy and Nicole
Corrections and Answers: The grocery store that we went to is called Carrefour, not the name I called it the other day. Katdog is the name that Nicole and Whitney were calling me.

Update 1/28/08 Guest Blogger!!!

2008-01-28T06:33:00.000-08:00

Hello! Guest Blogger Whitney here!

Last night Nicole and I left the hospital around 9pm to check into our hotel on Middle Street. I’ve lived in China for over four years and had never stayed in such a posh place! We had our own robes! But before testing out the robes, we decided to go explore the area around the hotel for a bit. The hotel is located on a pedestrian shopping street with about three billion shopping malls towering above. We took a stroll down the street only to find that everything was closing up. “What’s that smell?” said Nicole. “It smells like rotting flesh!” It took me only a second to identify the unmistakable nastiness that is “smelly tofu”. The venders fry the stuff street side in select cities across China, unfortunately, Shenyang is one such city.

We decided to escape the smell and head back towards the hotel. Earlier, I had noticed an intriguing “alley way” running behind the hotel and suggested to Nicole that we explore it. My reasoning was that it probably had some delicious hidden secrets. Sure enough, I read signs for “potato noodles” in the windows of a few places. For only five kuai a bowl (less than one dollar) I had to try it. We entered the nearest restaurant and I ordered a bowl of the stuff as I stood in the entry way. After ordering, I took a few minutes to survey the inside of the restaurant. My excitement for the noodles made me forget to do this before placing the order. These are the things we saw while waiting for my “potato noodles”: A mangy white cat crawling over EVERYHING. A woman washing her hair in the sink. Bottles of Sprite sitting in a thick, gooey, brown liquid on a dusty shelf. Then the woman starting blow drying her hair. Nicole and I met eyes and I knew then and there that she had no intentions of trying the noodles. After a few minutes the man brought me the noodles in a plastic bag of noodle soup and we made our way back to the hotel. I figured it was hot enough to at least try a bite. The potato noodles were gummy and I stopped after the first nibble.

Nicole and I had a lovely sleep on the hotel beds although she thought they were a bit hard. The next morning we woke up to a broken toilette so we got ready in a flash and headed to the nearby Starbucks. We loaded up on coffees and hot chocolate and took a cab to the hospital to join Derek and Mom. After a delicious brunch of breakfast sandwiches, we made preparations to go to the market where we hoped to find some good gifts, etc. Derek started watching a movie and we went down the hall so Lucy could drill the Chinese name of the market into our ears for the taxi driver. Luckily, we got there with no problem. However, the market was anticlimactic. A bleak selection of things and when we did find something of interest it was difficult to bargain with the little shopkeepers! At one point, a shopkeeper said “hold on, watch my shop!” as she ran off to find a bigger sized shoe.

After the market was when the trouble began. We stepped outside into the bitter cold and tried to get a taxi back to the hospital in time to be with Derek for his 4pm stem-cells. The next 25 minutes included walking up and down the busy, freezing road, stepping out in front of traffic, begging taxis to take us back to the hospital, and feeling utterly confused as to why they wouldn’t. Turns out, it was the beginning of rush hour and the drivers were quite picky about their passengers. We got desperate and Nicole was offering 200 kuai for what is normally an 8 kuai ride. I had never faced this situation before and had no clue how to proceed. The thing that came to mind seemed logical at the time but in retrospect, it could have ended badly! The three of us had a “sit in” in the taxi. We ran up to one and opened the doors as it was still moving and jumped in. The driver kept saying “no no no! I’m not taking you! I have no gas! I’m not working! Get out! Get out!” But I yelled back, “YES YES YES! You have to take us! We need to get back to the hospital! We’ll come with you to get gas! We’ll pay you 200 kuai!” But he wouldn’t budge. He told us to get out. We wouldn’t get out. We commented how warm it was in the cab and I told him we’d wait until he came to his senses. He never did. He turned off the engine and just sat there watching traffic. I eyed his money bag and fantasized about shoving it into my clothes and holding it for ransom until he dropped us off at the hospital. But finally, we gave up and got out of the car. We finally found a guy who said yes, after I offered a bunch of money. But on the way to the hospital we decided to drop Katdog off and take the same driver to Pizza Hut. We knew we were taking a risk by letting our cabbie go but we needed pizzas for din din. Pizza Hut is a fancy affair in China. We ordered a few pizzas and waited in the warm, comfy waiting area dreading the second taxi battle we were about to suffer.

Luckily, it only took a few rounds of begging and near tears before a driver agreed to take us. I asked him what the problem was…why it was so difficult to get a driver and he said, “It’s not personal, it’s just the time of the day!” We’re still not convinced.

The pizza was good. But Nicole put in a terrible vampire/hunchback of Notre Dame/werewolf movie and it just went on and on as we played a few rounds of phase ten and Derek played some games on a cell phone…

We are winding down now. Katdog is sorting through the clean laundry that just came back and is checking for other people’s underwear.
Nicole and I will head back to our hotel room soon and will keep our fingers crossed for a working toilette.

I’m leaving to go back to Beijing tomorrow which saddens me. It’s been wonderful to be here for a couple of days with these amazing people. It is not easy for them…the language, especially. But I’m happy to see there is a mini support system of foreigners on the same floor. I will miss you three. Thank you so so so much for having me up here in Shenyang and letting me spend time with you in the “dorm”!!!! I love you!

From Kathy: Derek had an IV Stem Cell injection today around 4:00 pm. He is hanging out in bed, recovering from surgery still and watching lots of episodes of Family Guy.

Update 1/28/08

2008-01-27T15:58:00.000-08:00

Sorry about not getting the update to you yesterday. We couldn't get the internet.
Hi Everyone,
This morning the doctor came in to change Derek’s bandage on the surgery site. It is over the incision site of his original surgery. It is about six inches long and sewn up with stitches, not staples. I was glad to get a look at it.
Nicole took a taxi to the train station this morning to pick Whitney up and bring her back to the hospital to spend a couple of days with us. It is great to have Whitney here because she speaks fluent Chinese. We want her to stay the rest of the time that we’re here.
They continued giving IV fluids one bottle after another all day long. After Whitney got here, we had her ask the nurse what the bottle of yellow fluid was. The nurse told her that it was Ying and Yang. We knew what this was, but didn’t know that you could get it in a bottle. Derek had the nurse take the IV out of his foot tonight because his legs have had more spasms then normal. It has been too hard trying to keep from pulling the IV out every time his legs spasm. The nurse said that they will have to put another one in tomorrow, so Derek wants them to put it in his left hand.
Late afternoon, Whitney, Nicole, and I took a taxi to a store called Callefore. It is a French chain store with a lot of imported items. The taxi driver told Whitney that there were six of them in the city, so she told him to take us to the nearest one. It was about a fifteen minute taxi drive. We saw another part of the city that we haven’t seen before. It was a much more upscale section of the city. It had the largest hospital, a university, and many upscale stores and restaurants. The store was like a mall on the first two floors, the grocery store on the third floor and we didn’t even go to the fourth floor. It was great going with Whitney because she could tell us what items were, ask questions to salespeople , show us items that she likes from here, and order us food that is prepared for you while you wait. We had a feast when we got back to the hospital on the food that we had cooked for us, vegetable fritters and a roasted chicken. Nicole said that it was the best food she has had in Shenyang. It wasn’t as good as she had in Beijing, but the best from here. We think that two guys attempted to pick pocket us while we were exiting the store. Luckily Nicole was behind Whitney and I and picked up on them. She shoved one of them out of the way. They didn’t get anything and we were fine.
Lucy took Ben and Paul to the forbidden city today. They couldn’t go inside because it wasn’t handicap accessible, but they bought a lot of souvenirs. They brought them in to show us tonight and we treated them to ice cream that we had bought.
Nicole and Whitney have gone to the hotel for the night and Derek and I are getting ready for bed. Love to all and we’ll write again tomorrow. Love, Derek, Kathy, Nicole and Whitney

Upate 1/26/08

2008-01-26T04:22:00.000-08:00

Hi,
We had a scare last night. The nurse came in after dinner and took Derek's temperature. It was a little high on the celcius thermometer, so we took it wil our thermometer. It was 99.6 while he was still on the advil, so we gave him two Tylenol. As the night went on, he was sweatly profusely. He was drinking a lot of water and putting out just as much. The hotter he got, the more we started to worry. We know that there are only two antibiotics left that he hasn't built up a resistance to. We didn't know what the antibiotic was that they had been giving him. The nurse said that she didn't know and we would have to wait for Tony to come in today. Around 11:00 we called nurse, Auntie Karen, to ask her opinion on what might me causing the fever and also to see if she could find out from Derek's doctor at home what the two antibiotics that he could take. If he got really sick, Nicole had brought a few different kinds of antibiotics. Karen said that we needed to find out the antibiotic that they had been giving him. Nicole called Neal to see if his friend, Jane, who speaks Chinese could talk to the nurse to find out for us. Each time that Nicole gave the nurse her cell phone, they got disconnected. Nicole's next move was to get on the internet and translate the question into Chinese. She showed it to the nurse and with some work, she got her to understand. She found the label from the bottle. The only thing in English was the name of the drug. Nicole looked that up on the internet as well and found out that it is a drug only produced in China. It is a combination of two drugs. After reading all the information, we felt that it was appropriate for his type of surgery and he might not be resistant to it. Karen got back to us what drugs Derek could have. Luckily Nicole has some of both here if we need them. None of us went to sleep until after midnight, including Derek who hadn't slept all day.
The nurse took Derek's temperature this morning at 7:30 and it was normal. We were all so relieved. It was real nerve racking fearing that he would get really sick over here and not be able to communicate or be able to get the appropriate drugs. He has felt fine all day and slept most of the afternoon.
Whitney is coming tomorrow for a couple of days. She and Nicole are going to be staying in a nearby hotel. She is also bringing us microwave popcorn, cereal and cheddar cheese all from America.
Derek said to keep your eyes out, because he wants to try to post some pictures.
PS. Auntie Sherry - What kind of puppy is doogle?
Talk to everyone tomorrow.
Love, Derek, Kathy and Nicole

More Pictures!!!

2008-01-25T02:48:00.000-08:00

Derek with his new Kevin Youkilis look

Ben from Australia

Paul from Australia

Derek's daytime nurse and our neighbor Niaomi from Canada

Lucy and Tony

Update 1/25/08

2008-01-25T02:34:00.001-08:00

Hello,
Lucy and I took Derek’s bed downstairs to pick him up from ICU around 10:00 this morning. He was glad to get back to the room. He said that he was sore. They have been poking him all day with IVs and hanging one bottle of liquid after another. They sent him back up with no pain medicine in his pump. The nurse from ICU said on the way up that she didn’t think it was working for him. She told Lucy that the foreigners don’t handle pain as well as the Chinese. Derek said, “I must be a wimpy American”. The nurse that he had once he got up here couldn’t seem to get the IV in or get the drips to work. After a couple of tries she had to get another nurse to put it in and get it to work. After that bottle was done, she couldn’t get the next one to go through his IV and wanted to keep poking more in his foot and then wanted to try his hand. Derek didn’t want her to touch his hand because it is still swollen and sore from when they missed his vein downstairs. His feet are pretty bruised and swollen from all the IV sticks. So the second time she couldn’t make the IV work, I went and got Lucy . She came in and talked with the nurse. About the same time, a man came in with a pump of pain medicine. Another nurse that we hadn’t seen before came in with Derek’s day nurse. The new nurse found a vein in is foot. She put an IV in that looks more like we have at home Then she covered it with a large clear adhesive bandage to keep it in place. She then put a tube off that that had a T shaped connector to hitch both the pain medicine and the bottles of fluid. We were so grateful for this nurse to come in and do it the correct way. Now they just change the bottles on the tree instead of putting a new IV in every time they hang another bottle. Other than trying to get them to put the IV in correctly, everything else went well. He is eating, drinking a lot of fluids, and watching DVD’s. Thanks for the comments and prayers. We write tomorrow.
Love, Derek, Kathy and Nicole

Nicole's Trip to Beijing Part One

2008-01-24T03:17:00.000-08:00

Hey everyone, I’m back from my excursion to Beijing and the Great Wall. I am going to fill everyone in but in two or three segments. Below is day one.

On Sunday afternoon I left the now comfortable surroundings of 463 Army Hospital in Shenyang to head to Beijing for a whirlwind tour of the Great Wall and the capital city. As many of you know, one of my closest friends, Whitney Rosenberg, moved to China in 2003 to teach English and has been here ever since. I was so excited to have the opportunity to see her life.

I packed my backpack with the warmest clothes I had, took an extra duffle for the aftermath of my planned shopping and headed to the train station with Lucy. On a side note, I believe it is truly possible to have almost anything delivered to you in China. A few days before I went to Beijing I had asked Lucy where I should go to buy calling cards and whether I should go to the train station to by my ticket in advance. She said she would have people deliver both items to me. Sure enough, twenty minutes later my calling card arrived and the next morning a first class ticket to Beijing was delivered to my room. I could get use to that! Once we arrived at the train station Lucy navigated me through security and to the right platform. She talked the guard into letting her get on the train too so she could show me my seat and where to store my luggage and then she was off.

Taking the train during the day was a great way to see some of the northern China county side. The mountains in the backdrop were very picturesque; however, closer to the train tracks the scenery was mostly small towns and villages where the poverty level was very evident. Many of the houses had broken windows and clothes hanging on the fences. I can’t imagine how they stay warm in this cold climate or how their clothes ever dry.

Whitney met me at the entrance to the Beijing train station, which is a few stops from her office and ushered me to the subway. Unlike Washington, DC which has escalators everywhere, Beijing had lots and lots of stairs. Which is not a lot of fun when everyone is pushing and shoving and you have two big bags. I must say that the subway lines were very straightforward and even if Whitney hadn’t been there to get me I would have been able to navigate my way. We took the subway to the outskirts of Beijing and then caught a cab the rest of the way to Whitney’s apartment. Whit informed me that in China you always sit in the front of the cab next to the driver and only when there are two or more people do you sit in the back. Whitney lives in a large “community” which is made of very tall apartment buildings. She lives in a two bedroom apartment on the twentieth floor with her boyfriend. The apartment had all the comforts of home minus the dishwasher and a dryer which she said are almost impossible to come by in China. We dropped of my stuff and grabbed another cab so Whit could take me to one of her favorite restaurants for dinner.

Whitney’s sister Erika is in Beijing for a year to teach English as well and her husband Dan who is working on his PhD in Antarctica was in Beijing for a visit so they met us for dinner. The restaurant we went to is called Lotus and it is actually in the Holiday Inn. The Holiday Inn in China is a five star hotel with lots of nice restaurants, upscale shops and even a bowling alley. Dinner, in two words, was beautiful and amazing. I told Whit to order for me and that I would try whatever she recommended (Lotus only serves vegetarian dishes) so Whitney and Erika ordered a lot of dishes for all of us to split. We had mushroom dumplings, wild rice, cauliflower in a tomato glaze, a “chicken,” potato, green pepper dish, “sausages,” the best pumpkin soup I have ever had and pumpkin cakes with a bean curd filling, just to name a few. The dishes are small, enough for each person to have a few bites which is how you are able to try so much without filling up too fast. The food was some of the best I have ever had and the presentation of the dishes was spectacular. Even our plates were real sea shells. Also, Lotus offered tons of different combinations of fresh squeezed juice for all different ailments. I chose one for digestion after my horrible McDonalds fiasco.

After dinner Whit took me to a grocery store with all imported foods where we bought some Land O’ Lakes cheese, Frosted Flakes and Coors Light (for my mom) to bring back to the hospital with me. When we got back to Whitney’s community she suggested we go for a “foot wash.” For $4.75 in US dollars you get an hour and half foot massage called a foot wash. Whitney and I went to the spa by her house where we were escorted into a private room with two big comfy reclining chairs and a TV. Two ladies came in and had us roll our pants up, take off our shoes and socks and put our feet into very hot bowls of water with herbs floating in them. After letting our feet soak the women came back and did massage and reflexology on our feet for over an hour. I had a few painful spots but they really worked on them. Then Whitney told the ladies that we would like the bad energy sucked out of us. I was a bit concerned. The ladies left the room and when they came back they had glass balls with opening on the top that the proceeded to light a fire in. They then placed the balls on our feet. Because of the fire inside when they touched our skin the fire would go out and they were suctioned on. They didn’t really hurt, but they weren’t entirely comfortable either. When the women came back ten minutes later to remove them they told Whitney that the color in one of my glass balls was too dark meaning I had too much Yin. The woman said this meant I was having digestive issues. How true! Thanks McDonalds! Now that our feet were primed for some heavy duty walking the next day we walked back to Whitney’s apartment to go to bed. My first night in Beijing left me with a very full and satisfied stomach and some very relaxed feet!

The next morning we were off to the Great Wall, but not before a very interesting Korean breakfast… More to come!

Update 1/24/08

2008-01-24T01:54:00.000-08:00

Hi,
Nicole and I worried all night about Derek. We wanted to go downstairs and see him so bad. We were told that we could go see him at 9:00 this morning and Lucy was supposed to order some rice soup for us to take to him. We had decided to also take him some instant oatmeal with some jam in it. Lucy arrived with the soup and wanted me to heat it a little more. When I did that I tasted it. It was awful. It had no flavor what so ever, but we took it along with the oatmeal like we were supposed to in our lunch boxes. When Lucy buzzed to get us in, a nurse came to the door and took the food and told Lucy that we couldn't go see Derek because they had a life threatening situation with a patient in ICU. Nicole and I were heartbroken and our first question to Lucy was, "Is it Derek?" She told us that the nurse had told her it wasn't Derek. We talked her into seeing if we could see him later in the morning. At 11:30 we got to go down and we took Easy Mac & Cheese for him to eat. We put on our gowns and plastic sandals and proceeded in. He was sleeping, but we woke him up because we didn't know if we would get to see him again and we had to know how he was doing. He looked great. He said that he did have some neck pain. He hadn't eaten anything that we had taken him this morning because it was cold when they gave it to him. We had been told yesterday that the nurses would only feed him if they had time if we didn't feet him ourselves. With the emergency, they didn't have time. We got him to eat about half of his Mac & Cheese. They are using his catheters and doing it about every 3 or 4 hours. His spirits seem good. We had sent his IPOD and headphones down this morning. He is listening to that to pass the time. They said that we could go back down at 3:00 and feed him again.
When we came back up stairs we visited with the new American and family. We found out how Greg got injured and that he has a little girl who is 4 years old. His wife couldn't handle the situation so she left him 2 months ago and now his parents have had to move into his house and care for him. His Dad is only here for a week and then his Mom is staying and taking him back home by herself. Nicole helped him get his blog site up on his computer. It can be tricking getting things on the computers here because things are censered.
We had some great news today on our floor. Paul, one of our Australian friends, got movement in his foot last night. They were trying to analyse what muscles were making it move. Paul also had a cyst removed and bone marrow implant 13 days ago. He is a lower injury and had some leg movement before he came because he had quad and ham muscles. It is so exciting. When someone has a change, everyone gets so excited for that person. You kind of become a family among the ones that can speak English. You visit, talk, share ideas, and if someone doesn't have something that you need you just ask someone else. It is kind of like being back in college and living in a dorm.
Nicole and I went to Wal Mart again today. We had our list and a list of items some of the other patients needed. It is pretty bad that we are beginning to know where to find everything in the store.
We got back around 3:00 and made Derek some more Easy Mac and we had bought some delicious fresh baked rolls, so we took him one of those along with a couple bananas, water, and Gatorade. We both got to go in and see him. He ate almost all the Mac and the roll and enjoyed his Gatorade. We woke him up again this afternoon, but we wanted to make sure that he got something to eat since he would have had to go until morning if we didn't. We have to say again, He looked good and his attitude was great. I can't tell you how wonderful it feels to see Derek go through a surgery and come out of it looking so great after all of the horrible experiences we have had over the past two and half years. They told us that he can come back to our room between 8 and 9 tomorrow morning. We can't wait. We told him to hang in there and try to sleep to make the time go by quicker so he can get back upstairs.
I made Nicole (in her words) a delicious breakfast sandwich for dinner. Now we are going to tidy up the room so it will be ready for Derek in the morning. We will write again tomorrow.
Love, Kathy, Nicole and Derek

Edit to update 1/23/08

2008-01-23T16:41:00.000-08:00

It was brought to our attention first thing this morning that perhaps I had made a mistake on the update that I did last night. I was not high while I was down there. I meant to say that Derek's blood pressure was high while I was down there. It was late when I did the update last night and I did not proof read. I am sure that there probably were other mistakes. We are getting ready to go see Derek and take him something to eat. I'll update again later today.
Love to all, Kathy

Update 1/23/08

2008-01-23T03:42:00.000-08:00

Hello Everyone,
I will start where I left off yesterday. While Derek was in message, Lucy and a girl from anesthesia came to find us to sign the anesthesia authorization for surgery. The girl also told Derek that he had to shave his beard. Derek wasn’t happy about that and Lucy asked him why he didn’t let the beautician shave his beard. They agreed upon him shaving most of it, but leaving a mustache and the hair on his chin. Which Derek did before he went to bed. Lucy explained what we needed to do last night so the nurses didn’t need to come in.
An American family arrived late yesterday afternoon. They are from Arkansas. There is the Mom, Dad, and their son, Greg. He looks to be in his twenties. He has a C-6 spinal cord injury. We have introduced ourselves, but they are still getting settles in. Lucy took them to their first trip to Wal Mart this afternoon.
We ordered pizza and an appetizer from a European restaurant last night. It was a nice change. I am really craving some fresh vegetable, a baked potato and a thick steak. Derek can’t have anything to eat or drink after 8:00.
This morning the nurse came in and gave Derek two injections in his butt. He was glad that they gave them to him there because he couldn’t feel them. At 7:00 they put a catheter in him that was made up of part of his cath kit and part of theirs because of the latex issue. There supplies don’t say if they are latex or latex free. I guess that it isn’t a big issue here. They tried to tape the whole thing together but it was working too well. At 7:50, an orderly came with a gurney to get Derek. He wheeled it up beside his bed and motioned for Derek to jump on. We tried to tell him that Derek couldn’t do it by himself. He once again motioned for Derek to get on. Derek turns to me and says, “ If I could jump on myself, I wouldn’t be here. I would be home.” Finally he got the hint and went and retrieved a tiny nurse. She started untucking the sheet and I though that they were finally getting the idea to pick both the sides of the sheet up and move him sheet and all. Wrong, she didn’t want to do it that way. She got up on the bed and tried to move him. Wrong. The she motioned for me to help. The three of us finally got him on the gurney and he was off to surgery.
Nicole arrived home from Beijing around noon bearing gifts, groceries from the United States, pictures and lots of stories. She had a blast.
Around 12:30, Lucy came to get us to go see Derek in ICU. When we got there, they said that only one person could go see him. So we agreed that I would go. I had to take my shoes off and put a pair of their plastic sandals on and a disposable robe over my clothes. Derek was awake and complaining that his neck hurt and he wanted a pillow. They said that he couldn’t have a pillow for six hours. He had to lay flat. He was very cold and his teeth were chattering. No hair on his head didn’t help. I got them to put another blanket on him. The doctor came in and Tony translated what he had to say. He said that they drained the cyst and took the cleaned the spinal cord where it was adhered to the spinal column. He said that the color of the spinal cord was good, it looked normal and everything now seemed to be straight and flowing. He felt that with the surgery and getting his own bone marrow stem cells implanted at the same spot that Derek stood a good chance at getting some improvement. He said that there was some swelling around the spinal cord. I think that this is normal after surgery and moving him around. They had told us this after his accident. They did ask if he had hypertension. I told them that he had had it while he had been hospitalized before, but it has been normal. I was high while I was down there. They told me to plan on bringing him something in the morning to eat as they don’t serve food. I asked what he could have and they suggested rice soup. I asked if they could order us some, so we will have it delivered in the morning. Only one person can go and visit the patient in ICU for a few minutes at 9:00 in the morning and 3:00 in the afternoon. They gave us a list written in Chinese that we needed to get together and send down to Derek. They translated it to English and we had to sent a face cloth, toilet paper, a spoon, straws, water, and a lunch box. The last one we had to question. Lucy said that it was something to take your lunch in. As we don’t have our version of a lunchbox, we had to question more. We finally found out that we need a container like Tupperware to take him something to eat. Fortunately we brought three from home. They said that we couldn’t see him again today, so we pleaded with Lucy to see if we could see him one more time. They agreed that I could go down at 3:00. Tony took me. Derek must have complained enough because he had a pillow under his head when I went down. Of course he asked me for another one and when I said no, she wanted me to double up the one he had. No. He kept asking me how long he had to stay there. He wanted me to check his catheter, so I looked under the sheets and his bed was totally soaked. I told Tony and he told the nurses. They had to roll him from one side to the next and change his whole bed. That really bothered me since he was supposed to be flat on his back. We have come so far and taken such a risk to get a chance at getting some improvement that I don’t want to take a chance at something going wrong. When I got back to our room, Lucy came in to see how Derek was doing. I told her about the leaking catheter and soaked bed. She asked us about what Derek normally does and we showed her how his catheter kits worked. She said that she would take it down stairs and show the nurses to see if they would do that every 3 or 4 hours instead of soaking his be continually and have to roll him and change it. I’m not sure if it will do any good since we have done this half a dozen times already for Tony, nurses and doctors. Nobody has understood us yet.
Nicole bought some new DVDs in Beijing, so Derek will have something to watch while recovering. He is supposed to spend two nights in the ICU and then he can come back to our room for us to take care of him. We will feel a lot more at ease once we know what is going on with him. He is down there with no one who speaks English. He has nothing to watch or do while he is awake.
I ordered the traditional Chinese duck for dinner tonight. It was good.
Thank you for all your prayers. We are so hopeful that this will be the miracle that we have been praying for. Love, Kathy, Derek and Nicole

Update 1/20/08

2008-01-21T20:43:00.000-08:00

Ni hae,
It's about 12:30 pm our time on Tuesday. I am going to tell you about Yesterday and then get you up to speed as to what has happened up until now today as things are getting ready for the surgery tomorrow.
I woke up early yesterday morning to turn the computer on to keep track of the Patriots game. I can only get the quarter, time left and score. When I got onto the internet, they were ahead in the second quarter. I then lost the internet until the third quarter, which they were ahead. I got the score halfway through the 4th and then the final score. Go Pats!!
After the morning routine, I took Derek to acupunture. Upon returning, I scheduled him for reflexology. The girl gave him a foot message with pressure points. He then had physical therapy. He had a short message before afternoon therapy. Lucy video taped some of his therapy for the Beiki Biotech company. They will do a comparison video before he leaves.
Nicole called a couple of times today from Bejing. The second time she was on the Great Wall. She is having a blast and really getting to experience China. I'll have her write a seperate update when she returns telling you all about her adventures. She will be back in Shenyang tomorrow around noon. Derek and I spent another quiet night watching DVD's ( When we find one that isn't just in Chinese).
The head nurse and Tony came in yesterday to discuss what we would do about catherization for Derek while in the OR and ICU. They normally put in a Foley (a catherter that can stay in for a long time.) and leave it for the ten days. We are having a hard time getting them to understand about Derek's Latex allery. They just can't figure out if any of their supplies contain latex. They agreed that they would use Derek's catheter to insurt and then they would remove his bag and attach their bag that they can empty. They kept saying that they will leave it in for days. I can't get it thru their heads that they are not made to stay in for days. I have resolved myself to the fact that as soon as he can come back to our room, I will remove it and go back to cathetering when needed by us.
This moring the nurse came in with Tony and wanted the supplies that we had such as catheters and the surgical sterile latex free gloves and tape that I had brought with me. She insisted that she needed all these this morning to send to the OR and ICU for tomorrow. I was hesitant because each time that we have given them supplies that wanted to keep them for the next time and then they proceed to lose them. After the nurse left, Tony told me to get the supplies and keep them until he goes to surgery because he also said that they have too many patients and lose thing. When Tony and I tried to talk the nurse into letting us keep the supplies, she wasn't having any part of it. She said that the OR and ICU had to have them today. The doctor told me after I had already given the gloves to the nurse that he wanted 10 pairs. But she wouldn't count them or let me. So tomorrow when they come to get him, I am going to put some more gloves and catheters on his bed. I think that this is the hardest part; trying to get them to listen to you or understand what you are saying.
Derek was supposed to have reflexology again this morning at 10:00 and I was supposed to soak his feet in hot water for 10 minutes before hand. Of course we have nothing to do that in and they said they had nothing I could use, so Yankee inginuaty (spelling?), I took two gallon zip lock bags with warm water and put each foot in one to soak. Once I had him in bed already, we waited. When the girl hadn't shown up for a while, I went to the message room to ask about her. A therapist who could speak some English told me that she hadn't come to the hospital today. That is the way a lot of things go around here. They don't always inform you of changes so that you can be prepared. You wait or you make adaptions to your schedule.
Before he went to his morning therapy, Tony and a nurse came in to say that Derek needed the back of his head down to the middle of his back shaved for the surgery and that the nurse would be in at 1:30 to do it. While Derek was getting his therapy, I talked to Ben who was doing a standing frame that they have. He said that when they shaved his back for surgery they used a cheap disposable razor which really pulled and hurt, so we agreed that we would have them use Derek's good razor. I brought it even though he had decided before leaving home that he was not going to shave while he was here.
After lunch, Lucy came in and wanted to know if he wanted her to call a beautician to come to the hospital and shave his whole head so that he wouldn't look funny with just part of it shaved. I was opting for just the back shaved, but Derek wanted the whole thing done. At 1:00 the beautician showed up and proceeded to shave his head with an electric hair trimmer. I had given them Derek's razor to use to do the real shaving part. Next thing we knew out came the big old fashioned straight edge razor. She didn't want to use Derek's. She got out a cup and mixed up the cream and using a shaving brush, lathered up his head and went for it. Derek was regretting his decision. He said that he was nervous and it hurt. He won't even look at himself in the mirror and wanted his winter hat to put on. Lucy couldn't understand why he wouldn't let the beautician shave his beard at the same time. I was wondering what Papa O'Brien was thinking as he watched from heaven. I bet he was thinking that he could do a better job. I remember how they begged me when they were little to let Papa give them a buzz cut. They finally got me to agree and loved it at the time.
Derek is scheduled for a message at 2:30 and therapy at 3:00. After his surgery tomorrow, he won't be able to have acupuncture, message or therapy for 10 days.
The nurses are coming in tonight to tell us what we have to do to get ready for the surgery. This should be interesting since Lucy and Tony go home around 5:00 and the nurses don't speak much English. They are scheduled to come in at 7am to get him ready to go down to surgery. This will be a couple of hard days for us.
We have heard from other patients that they have certain rules for visiting while in ICU and there too they don't feed them any food, so we'll see what we need to do about that.
I will write another update tomorrow afternoon or evening our time to let you know how the surgery went and how Derek is doing in the ICU. Keep the prayers coming that the surgery and bone marrow transplant will be successful. Our love to all, Derek, Kathy and Nicole.

Update 1/20/08

2008-01-20T22:39:00.000-08:00

Ni Hae,
There isn't much to write about yesterday. Derek didn't have acupunture. He had physical therapy twice.. They call it physiotherapy. Derek wasn't feeling great yesterday. His stomach was bothering him, so other than therapy he spent most of the day in bed sleeping.
Lucy took Nicole to the train station to go visit her friend Whitney Rosenberg who lives in Bejing. Nicole said that she was glad that Lucy stayed with her until she was on the train. Like most places here it was very crowded, busy and confusing. She called once she had arrived at Whitney's. They were going to one of Whitney's favorite vegetarian restaurants. Tomorrow they are going to the Great Wall. Whitney lives in a suburb that has as many people living there as New York City.
To answer a few peoples questions. Yes the surgery is still scheduled for Wednesday, January 23rd. For Karen's question: Naomi also had a cyst removed as did Paul the Australian. As I said earlier, Naomi's dad said that she is a wimp. Both the Austrailians said not to worry about the surgery. That it really wasn't that bad. For Sue's question on the acupunture. They place long thin needles strategecly where they feel that they will hit the nerves that they are trying to stimulate. They then hitch electrical wires to the needles to send a current through Derek. It does not hurt and is supposed to stimulate nerves and is also used for pain relief as in Derek's neck.
I woke up early this morning, as most mornings, and turned the computer on to the internet to keep track of the Patriots score. I lost the internet for the third quarter, but was able to get it back to get the score halfway thru the fourth and then the final score. Go Pats!! I'm really bumming that I won't be able to watch the SuperBowl.
Maybe there will be something more exciting to write about tommorow.
Love to all, Derek, Kathy and Nicole

Update 1/19/08

2008-01-19T20:04:00.000-08:00

Hello,
We had quite a day yesterday. We got Derek up and ready for acupunture. He doesn't have physical therapy today because Timmy has the day off. He says that it is to sleep.
At noon Lucy took us by taxi to Middle Street which is the shopping mega of Shenyang with lots of stores and malls. We knew one of the malls was handicap accessible because the Australians had gone a week ago and told us all about it. Derek was on the persuit of buying some new sneakers. Derek sat in the front of the cab and Nicole, Lucy and I squeezed in the back seat with some of the wheelchair parts and the remainder of the wheelchair was in the truck which would not close. We were really afraid that the wheelchair was going to fall out as we went over the bumpy streets and weaved in and out of traffic. The taxi driver stopped once in the middle of the road to try and adjust the wheelchair and trunk hood, but to no avail. When we got unloaded on the very busy street, Lucy pointed out where the malls were and helped us cross the street. No easy feet here. There are four lanes of traffic all going the same way with no crossing walks or traffic lights. Everybody just takes their life in there hands and walks out into traffic weaving between moving vehicles and hopes that the vehicle will slow down long enough for you to get to the next lane. Lucy agreed to pick us up in three hours at the same spot that she had dropped us off. After leaving Lucy, we attemped to find the big mall that everyone had told us about. The first thing that we noticed was that every store had multiple steps and no ramps to get you inside. After standing in the middle of the busy street pondering what to do next, we saw some police officers and tried to communicate to them a ramp for the wheelchair. They finally helped us carry Derek and the wheelchair up a large set of stairs. Once inside, Nicole and I made a purchase and communicated with the salesperson that we needed an elevator and were looking for the floor with sneakers. She took us to the elevator and signaled the third floor. We kept trying the third floor but the elevator wouldn't stop on three. It would only go to 1, 4, or 5. We rode up and down several times and had people help us, but it kept doing the same thing. So we got off and tried the second elevator, but the same thing happened. We finally got off on the 5th floor only to find the entire floor was coats. The fourth floor was childrens and a playground. Giving up on this mall, we found a ramp to the outdoors by the elevators. Upon exiting, we found that we ended up in a parking lot and could not get back down to the main street because there were stairs with posts just wide enough for a person to fit through not a wheelchair. Finding no other way out, we went through the parking lot and down a side street and a bumpy, filthy alley to get back to the main street. We went by a lot of vendors who cook different foods and sell them right on the street. We kept walking and tryed other stores by people helping us lug Derek up the steps to get in, but once in we found that they had no elevators only escalators. We could see an elevator from the street in one department store, so once again got help to get Derek in. There was a Starbucks in the store which we all got something hot to drink. One of the girls working there was very nice and could speak quite a bit of English. She showed us where the elevator was, but once again you had to go up stairs to get to it and then the door at the top of the stairs was too narrow for the wheelchair. I am beginning to think that they need some good architects here. The girl went and got a manager to help us. He thought that we wanted the ramp to get us outside so he took us out throught the back of the building to an alley. We conveyed that we wanted an elevator to go up stair to find sneakers. Derek was looking for some Nikes. He put us on a service elevator. When we got to the sixth floor, the Nike section was closed for renovations. Back down the service elevator and out into the back alley. It is very dirty in those alleys. We continued walking and looking for any store we could get into with not much luck. I found a ramp at one mall around the side of the building but no way to get there other than going through the store which had many steps. We were cold and at a loss as what to do. We tryed making calls to the hospital to get Lucy but couldn't catch up with her. We finally found just a Nike store with a couple of steps. The sales clerks helped us carry Derek in. He picked out a pair of sneakers. They cost more here where they are made than in the states. But we had worked so hard, we were going to let him get them anyway. We showed them his size out of his sneakers. When the salesperson came back he had a size 10 US. We said no and again told him what size. Several of the salesperson were watching now and all said that they don't make them that big. It would have been nice to know ahead of time that they don't sell sneakers in larger sizes. We gave up the shopping idea and went to a nearby McDonalds. I ordered two Big Mac value meals and one chicken sandwich meal for Derek. We had to eat them out in the cold because of all the stairs. Like most things here, they are small. With a value meal you get a small fry and small coke. Derek didn't eat his sandwhich because it was to spicey and ate most of my Big Mac. It was good at the time, but later in the evening Nicole became very sick and still doesn't feel well. Lucy showed up while we were at McDonalds and we proceeded to try to hale a taxi. This brings on another whole dilema since the taxis are small and they do not like to take the time to stop for wheelchairs. Paul had warned us about this previously. The other part that makes it hard is that they don't believe in waiting there turn for anything. We have seen this in the airports and stores. There are no lines or waiting your turn. They reach in front of you, push, shove and we have even seen them fight and hollar. We finally told Lucy to tell the cab driver that we would pay double if he would take us. After a long time Lucy convinced one to take us. All the while people are hovering over us hoping that the driver won't take us and they can jump in. Once again we rode home hoping Derek's chair would still be in the back when we arrived at the hospital. When we got back to our room, we immediately started heating stuff in the microwave to warm Derek's feet and legs. It took a while. I am in no hurry to rush back out to souvenier shop. Three hours with no luck. Afterwards I asked Lucy what people do after they get injured and end up in a wheelchair. She said that they don't work and they don't go out. They just stay in their house. How sad it that. We did get to see some of their culture and surroundings. Another tidbit: There are no public restrooms here, so it would make it hard to do a full day of shopping like we do at home.
We had Lucy order us Chinese food again for supper and again didn't get our correct order.
We met a girl from Canada, Naomi. She is here with her father. She is a parapelegic who is 10 days out from surgery for the removal of a cyst. Everyone on the floor including her father have been saying for a week what a wimp she is. She is constantly asking for pain medicine.
We borrowed some DVDs from the hospital and are planning on putting one on and hitting the bed.
Michael, to answer your question, the needles don't hurt when they put them in Derek's neck.
Love to all, Derek, Nicole and Kathy

Update 1/18/08

2008-01-19T00:59:00.000-08:00

We lost our skype for about 24 hours, so we couldn't call the states via the computer. We were really sad to think that we had lost our main source of communication with home. Thankfully we got it back. The calling cards that we had bought in the States will not work here. We had to buy one card that fits in the telephone and stays there and then you have to buy a seperate card that costs 30 Chinese dollars for about 20 minutes of time. Derek and Nicole tried it and got through to Maine.
Derek had therapy twice again today. Around 5:00 the stem cells arrived from the airport. This time Derek got them though an IV in his hand. They hung a bottle of water first and let half of that run through. Then they hung the bag of stem cells. It is a very small bag of yellow liquid. It is hard to believe that there are 100,000 to 150,000 umbilical stem cells in that small bag. After the stem cells bag is done, they hitch back up a bottle of water to flush the stem cells through the blood stream. Derek had to lay on his back in bed for four hours afterward.
We ordered Chinese food again. Ben and Paul showed us in the menue some of the things that they had tried. They are much more adventurous than us. They have eaten chicken feet and whole fish (skin, bone, eyes), liver and they love the duck. I do want to try the duck before I leave. When our order was delivered, we were missing have of what we ordered, so Nicole and Derek got just sweet and sour pork which they really liked. I got prawn which is like our jumbo shrimp and were good.
We found out why the Chinese wear the same clothes over and over. They have little money to buy clothes so they wear the few clothes they have for days, sometimes for a week at a time.
Thanks again for the comments. Love, Derek, Nicole and Kathy

Pictures from Shenyang

2008-01-18T17:00:00.000-08:00

Derek and our not-so-soft beds!

The always busy PT room...

Our little green door...

Our shoe rack turned medicine rack. The nurses here love this. They have never seen anything like it so we told them we would send them some when we got home.

Our entertainment center with snacks from home...

Our "kitchen"

A picture of our Bathroom...

Shower Chair...

1/18/08

2008-01-17T19:47:00.000-08:00

Hello,
When I talked to Steve this morning, he said that some people are having a hard time posting comments, so Shane gave me step by step instructions on how to do so. They go like this:
1. Once on Derek's blog site, click on comment
2. Write your comment
3. Under the scrambled letters, it says work verification. In the box write the letters just as you see them
4. Choose your identity by clicking on nickname. A box will come up. In this box type in your name. This can be your real name or any name you choose to go by.
5. Don't worry about the URL
6. Go to the orange box that says publish comment and click on that.
I hope that this has been helpful. If you have any problems, call Shane at 236-3838
Yesterday Derek had accupuncture again. They left the needles in for 15 minutes. Derek conveyed to the doctor that he was having neck pain, so the doctor put two needles in his neck. He had therapy later in the morning and again in the afternoon.
Nicole cooked breadfast sandwiches this morning with the help of the cleaning lady. The cleaning lady is very sweet. She doesn't have an English name and we can't pronouce her Chinese name. She doesn't speak any English. She was speaking in Chinese to help Nicole with the hot plate and then Nicole didn't put any oil in the pan before putting her egg in. The cleaning lady was trying to tell her to put oil in the pan to no avail, so she started looking around until she found the oil and started shaking it at Nicole. It was quite commical to listen too and watch. But the sandwiches were quite tasty in the end.
Nicole and I are trying to learn a few Chinese works. We are working on the ten floors on the elevator and a few basic words.
Nicole met a family from Romania. There is the mother, father and seven year old son, Alexander. They don't speak English or Chinese. Lucy said that it is very hard communicating between them and the doctors. I don't know how Nicole does it, but she has managed to communicate quite a bit from them. She found out that they went to Italy for six months for stem cell for their son who has muscular dystrophy with no results so they have come to China to try, since China is supposed to be the best for stem cells.
We had ordered chicken and dumplings again for supper. Derek and I like our dumplings fried, so Nicole and I were frying them and we filled our room with smoke. Next thing we knew, Lucy came to find out where the smoke was coming from; the nurses were all concerned. She didn't look too happy. Those crazy Americans!! Then she told us that if like them fried, she could just order them that way for us.
At the same time, the Austrailians came for a visit. They are really nice and they gave Derek a lot of helpful advice about living with the SCI.
Thank you for the comments that we have received. We'll talk to you again tommorow.
Love, Derek, Nicole and Kathy

Update 1/17/08

2008-01-16T21:36:00.000-08:00

Hello,
Nicole wanted me to let people know that they should not have to create a google account to leave messages any more. You should be able to just click on comment and write one. We appreciate the ones that we have received. We can't get them on our computers, but Shane copies them and sends them to us each day. It is great to hear from home.
Derek started having spasms in his stomach the night before last. This is new, but we don't know what is causing them. He says that they hurt and are irritating. Last night he said that he had a funny feeling in his left calf. Kind of like a tingling or spasm, but when Nicole felt it, she said that she could feel it spasm and she could also feel it contract. It is weird with Spinal Cord Injuries; things are always changing and quite often unexplainable.
After breakfast yesterday, they took Derek down to the 8th floor to take his bone marrow out of his hip. They go in thru his back. They will cleanse it and let the nerve cells regenerate for one week before they put in back into his spinal cord at the time of his surgery. After the procedure he had to come back and lay flat on his back for four hours and eat protein. He could not have acupuncture or therapy yesterday.
Derek is getting very bored, as we all are. We made him a calandar and put in on the wall next to his bed so that he could keep track of his schedule times and dates. We cross the date and procedure off when done. We are beginning to think that we should take it down because he looks at it all the time and complains that we have only been here five days so far. We downloaded Family Fued on the computer. We spend a lot of time playing it to keep ourselves occuppied. We will probably know all the questions and answers by the time we leave.
They brought our laundry back yesterday. For one 13 gallon trash bag, it cost 160 Chinese dollars or $20 US. Now we know why all the Chinese wear the same clothes for two to three days in a row. We have decided that we need to start doing like the Chinese. They are very thrifty and don't waste much. They don't turn lights on in the hospital until they need them at night, conserve their water, limit the hot water, and recycle. A lesson that I suppose we all could stand to learn from them.
We met two Australian men, Ben and Paul, who are both parapolegics two doors down from us. They both had surgery four days ago, so we went to talk to them about our concerns for Derek having surgery, the ICU and the Chinese pain management. They were helpful and reassured us. They told Derek that the damage has already been done and the surgery was his best shot to make the stem cells work. They said that the surgery wasn't that painful and that they had a morphine pump which allowed them adequate pain relief. They said that the worst part of having surgery is having to stay in bed for ten days without getting out. They don't get to have any acupuncture or therapy. If Derek is bored now, the ten days of nothing is going to be a drag. They had watched what DVD were available here, so we lent them the ones that we brought that we had already watched. A lot of the ones we brought we can't use because they are not formatted for the Chinese DVD player. Ben and Paul came to China by themselves with no caregiver. We are amazed and don't know how they got thru the airports by themselves. They hired a Chinese care giver. He calls himself Chicken Little. He stays in their room 24 hours a day and sleeps on a fold up army style cot. He doen't speak english. They have to pay him 50 Chinese dollars a day and buy his meals. They told Derek, "Don't be afraid of the op, Mate".
Nicole and I ventured out to Wal Mart by ourselves today via taxi. We got Lucy to write down the directions to and from in Chinese for the taxi driver. We took our time going up and down the aisles. We found quite a few American brand item such as Hormel bacon and ham, Nestle's ice creams, Pringles, Gatorade, Pepsi, Coke, Maxwell house instant coffee. Lay's makes potato chips here, but you should see the flavors; like cuccumber, shrimp, fruit flavored, mexican steak and a lot more. Nicole bought the cuccumber. We all tried them and didn't think they were very good. When Nicole read the ingredients, they didn't even have cuccumber in them. We did see that they have a McDonalds down the street that is across from Wal Mart. We might try it before we leave.
Well, that's about all for now. We'll talk again tommorow. Love to all, Derek, Nicole and Kathy

Update 1/16/08

2008-01-15T21:29:00.000-08:00

Hi everyone,
Yesterday after we met with the doctors about Derek having surgery, we took him down to the second floor to have acupuncture. The doctor has been doing acupuncture for 40 years. Derek had to lay on his stomach on a table. The doctor put needles in around the base of the spine and one behind each knee. Then the nurse hitched electricity to all the needles in his back so that he could feel it in his legs. They leave the electricity on for about 30 minutes. The needles are longer that the ones that Derek has had in the United States. They re-use the needles for the Chinese patients because they are very expensive, but the foreigners get to have one time disposable needles.
Derek had physical therapy twice yesterday. They worked some on balancing in a sitting position.
Today is laundry day. If we put our laundry in a plastic bag outside our door around 2:30 on Monday, Wednesday, and Saturday, a laundry service will pick it up and return it to us two days later for a fee. We sent out first load out Monday so we are waiting for them to return it to us today. We'll see how they did and how much it will cost us. Most things are pretty cheap so far. A taxi cab ride to Wal Mart cost us 8 Chinese dollars which is equal to 1 US dollar. We ordered our first traditional Chinese food the other day for lunch. We had pork and celery dumplings and chicken. It only cost us the equivalent of 3 US dollars. Derek thought that it was OK, Nicole loved it, and I thought it was pretty good.
We were up quite a bit through the night last night. Derek is scared about having the surgery here. Nicole and I also have our concerns. He will have to spend two days in the ICU after surgery and we will only be able to visit him certain hours for a certain amount of time. A Canandian girl next door to us had surgery and didn't like her stay in ICU. She says that there pain management if very different here. There are two Australian men with spinal cord injuries in the room two doors down from us. They both had surgery four days ago. We plan to talk with them to discuss our concerns and then we will present them to Tony for him to convey to the doctors and staff. We know that if we don't have the surgery, all the stem cell treatments will probably be a waiste. We will talk to you all again tomorrow. Thanks for the thoughts and prayers. Love, Derek, Nicole & Kathy

Update 1/15/08

2008-01-14T21:38:00.000-08:00

Ni Hao,
The past 24 hours have been busy and very eventful. We have so much to tell. We wake up very early since we fall asleep early at night. When the sun came up yesterday morning it was very smoggy. We thought that it might be because Shenyang is an industrial city and perhaps the factories had started back up on Monday morning. The temperature was 23 degrees below zero celcius. It always feels colder than the thermometer says.
After our morning routine and breakfast, the first doctor came in with the x-rays that Derek had had done on Saturday to do an exam on him. Upon finishing, he said that he would conference with the head neurosurgeon and get back to us. Tony always accompanys the doctors to translate for us. Derek then had his first physical therapy session. His therapist's name is Timmy. That is about all the English that he speaks. He is nice and does a good job. He did a lot of stretching and rotation with Derek. While Derek was doing his therapy, Tony brought me his schedule for his stay here. He has accupuncture Monday thru Saturday at 9:00am and he has physical therapy Monday thru Saturday at 10:45 and 3:00. It also had his treatment schedule which Tony said might change after the doctors conferenced. So early in the afternoon the head surgeon came to do his evaluation. Another doctor did an assessment of Derek's muscles so that he could do a comparison before he leaves the hospital. It is aquivelant to the Asia Scale test that is done in the United States. Then Tony and Lucy videotaped an interview with Derek performing some tasks. This is for Beike Biotech (the company that we went thru to come here) and they will do another one also before we leave to compare. After the afternoon physical therapy session, Derek was scheduled to go down two floors to have his first stem cell injection into his spinal column. They fly the umbilical stem cells from the city of Yen Hoa (may be spelled wrong). Once the stem cells leave the blood bank, they are only good for 24 hours, so they wheel all the patients down on their beds and line them up in the hall to do one after the other. They try to do them late in the afternoon because the patients have to lay perfectly flat for 6 hours. We did not get Derek's until 5:00 because the flight was late getting into Shenyang. Derek did very well with the procedure. Upon arriving back at his room, the nurse puts an IV in his hand and proceeds to hang three different liquids, one after the other. These are enhancers to help move the stem cells through his spinal cord and to help the stem cells regenerate. After the IV is taken out, at 9:00 he had an injection in his arm. Derek did great laying still for six hours. I had to get up every 1 to 1 1/2 hours to catheter him because of all the liquids that they had given him. He said that the shot in the arm hurt the most. This morning after breakfast, Tony came in with the doctor and x-rays and said that the doctor wanted to talk to us. The two doctors had gone over the x-rays and exams and came to the conclusion that Derek should have surgery if we agreed to it. He pointed out on the x-rays two spots on Derek's spinal cord that were of concern. At the top of Derek's injury site the spinal cord is adhered to the spinal colum and at the bottom of Derek's injury site he has a cyst full of liquid that is putting pressure on his spinal cord. The doctor said that he has been doing this type of surgery for 10 years and has had good results. Both doctors feel that if they do surgery on these sights, Derek might have a good chance of some recovery. We all agreed right off that he would have the surgery. We are thankful that they found these and feel that we have nothing to loose and hopefully a lot to gain. We feel that this is the miracle we have been praying for. In the United States, when you have a spinal cord injury, the doctors repair the injury with surgery and then leave it up to fait as to what you get back. They don't go back after the surgery to re-examine or follow up with x-ray or MRIs. We are so grateful that we came because we would never have known that these problems existed nor would Derek have ever improved. He is scheduled to have the surgery on Jan. 23rd. This was the day that he was scheduled to have his own bone marrow stem cells injected. They will go in and do the surgery to repair both problems and then inject his own stem cells at the site of the injury. This surgery will not extend our stay because we are going to give up one of our stem cell injections. He won't be able to do any therapy for a week to 10 day after the surgery until the stitches are out. I will keep you posted on any new developments. Thank you again for all your help and support in making this possible for Derek. We will be eternally grateful to you. Love, Derek, Kathy and Nicole

Update 1/14/08

2008-01-13T17:18:00.000-08:00

Ni Hao (Hello),
Yesterday we took Derek outside to the park across the street. He took a few pictures. He watched the skaters on the skate rink. They also ride sleds with seats on them on the ice and push themselves with ski poles. We didn't stay out to long because of the cold and the fact that it is not very handicap accessable. The few sidewalks that there are are so bumpy that we couldn't keep Derek's feet on the wheelchair. Next time Nicole is going to use an Ace bandage to sucure his feet on the wheelchair. The transportation system around here is fun to watch. Even though they have multiple lanes on the roads, no one uses them. The roads are shared with pedestrians on foot, bicycles, donkey drawn carts, cars, taxis, buses, and three wheel vehicles. There are no rules of the road. They honk alot and it is everyman for himself. We watch out our window and laugh. Shenyang is an industrial city so the skyline is always covered in smog. Much worse today being Monday and the factories are up and running. We are getting our morning routine more regular. We now all shower in the morning between 7:30 and 8:30, since we cannot stay awake at night to shower. Saturday night we were asleep by 6:00 and last night we were asleep by 4:00. We still don't have the food situation quite under contral. We usually eat instant outmeal and maybe a banana for breakfast. We have been eating easy mac & cheese, peanut butter and crackers, power bars and peanut butter and jelly sandwiches. Nicole did bring me instant coffee. That has been a real treat for me. We are waiting to meet with the doctor this morning. Derek is scheduled for physical therapy twice today. He is also scheduled for his first stem cell injection at 4:00 today. Thank you for all the comments. We have not been able to get the comments here, so we had Shane copy them and email them to us today. So we can now read them each day. Love to all, Kathy, Nicole and Derek

Update 1/13/08

2008-01-12T18:58:00.000-08:00

It is Sunday morning here in Shenyang. Today is a day of rest here. There are no doctors or therapists working today. We also are catching up on some rest. We all got to finally take a shower this morning. There is only hot water available from 7:30 to 8:30 in the morning and from 8:00 to 10:00 at night. Last night we all fell asleep by 6:00. The airline found our missing luggage and Tony went and retrieved it for us. We met Lucy yesterday. She is the other Beiki Biotech representative who is our translator and helper here at the hospital. She is very sweet. She took Nicole and I to Wal Mart yesterday. We went via taxi which was a real experience. The Wal Mart is a grocery store downstairs and the upstairs is the clothing and housewares department. You put your cart and yourself on an escalator to go upstairs and down. The grocery store part is very crowded and very noisy. There is a Kentucky Fried Chicken in the Wal Mart so we got some chicken to put in the refrigerator for today. Yesterday Lucy ordered us Subway which was delivered to our room. It was very fresh. Derek had blood work, urinalysis, an MRI (which Derek hated), an EKG, and x-rays yesterday. The doctors will go over these and compare with the copies that we brought. Our room overlooks a large park which has a frozen river running around it. It also has a skating rink which is usually full of people in the daytime. Early in the morning, you can watch people doing their exercises and people letting their dogs run on the frozen river. Nicole has been busy keeping in touch with everyone in the states via the internet. We are really appreciating the fact that we have our computers and the internet. We are even keeping up with the patriots score right now. Go Pats! Nicole has also talked with her friend Whitney who lives in Bejing. Whitney is planning to come visit us for a couple days in two week. It is very, very cold here. We miss everyone very much, but are also greatful for all your love and support. We will write again tommorow. Love to all. Kathy, Nicole and Derek

We Made It!!!!!!!!

2008-01-11T16:48:00.000-08:00

It's Saturady morning in Shenyang. After a very long day and half of travel we have made it to our destination. It took us 30 hours to get here and we finally made it at 10:00pm last night. The flight from JFK to Beijing was incredibly long and a cramped when Derek needed to lay down. None of us were able to sleep and Derek is praying for an upgrade on the way home. When we got to Beijing we found out that there was no aisle chair to get Derek off the plane so a nice man named Tiger, an employee of Air China, helped lift him into a regular wheelchair. We only had one hour to transfer to our flight so from here on out we felt like we were on the amazing race. We had to go through customs, gather all of our luggage, transfer to the domestic terminal, re-check our luggage, go through security, go to our gate, get on a bus without a wheelchair ramp, drive out to the plane, get Derek a lift to get on the plane, have Tiger and the flight attendents carry Derek on and then we were off to Shenyang. Thank goodness for Tiger, we never would have made it without him. After a short, one hour, flight to Shenyang we were greeted by Tony from the hospital. After all the luggage came off the plane, we realized we were missing a suitcase. Tony assisted Kathy in filling out the paperwork for the lost luggage. Unfortunatly, Derek is missing most of his clothes now. Tony is hopeful we will have it back in a few days.

We then loaded everything into a van, piled in and then we were off for a 30 minute ride to the hospital. Derek had a really bad scratch on his leg from the trip, within ten minutes of showing us to the room, the nurses were here to address the scratch, take his temp and blood pressure.

The room is quite nice with three beds, a view of the city, full bath, mircowave, fridge, TV, DVD player and water cooler.

We were able to get a few hours of sleep in and then the nurses were back again this morning at 7:00am to take blood and get a urine sample. Today, the doctors will look at the MRI's we brought and decide if they need to do more. Derek will have some basic evaluations today and he is scheduled to have his first stem cell treatment on Monday.

We miss everyone at home already, but we are so thankful for the opportunity to be here. Thank you to everyone for their love and support.

Love to all,

Derek, Kathy and Nicole

Leaving Messages

2008-01-05T16:24:00.000-08:00

There has been a bit of confusion about leaving comments on the new blog. Unfortunately, you have to have a "google account" to leave a message. If you have a gmail address you can sign in using this, if not, then click on the "sign up here" link below the user sign in. Setting up an account is easy and not very time consuming. People can feel free to still leave messages at www.derekobrien.org; however, we have been told that we may not be able to access that webpage in China. Also, if you do not want to set up an account but would like to contact Derek while he is away, you can email him at dobball40@yahoo.com.

Thank you and we look forward to hearing from you.
-N

NEW UPDATE

2008-01-03T13:34:00.000-08:00

Hi everybody Here it is just before the big trip. I want to personaly thank my mom dad for an awesome trip to Disney. Nicole, Neal, Dustin, Kenz, Shane, my mom and dad all where there. I took the IBOT down it was awesome having it down there people were so amazed by it What a challenge brining it on an airplane. I cant explain how many times I had to explain how it balanced I thought about telling them it was magic but I didn't. I I feel bad for my Dad and brother they had to do a lot of man handling to get me on off of rides, but we did it. Some of the new rides were awesome. We got to eat at some pritty cool places like the Hoop de do review Cinderellas Castle and many more. Everything was great till we got home and I got a really bad cold. Not what I needed before China it is more a head cold, chest mucas and the caugh. This stinks! I battled through this and went to the dip for Derek. Look here for updates when I'm in China Thank you everybody for your support. -D-

A letter to my brothers

2007-11-23T17:31:00.000-08:00

As I drove home from work the other night a song came on that I had not heard in a few years. I could barely concentrate on the road as the tears streamed down my face. It wasn’t that the radio stations had stopped playing the song it’s that every time the song came on I would change the channel. The song held too many memories and it took me two and half years to be able to listen to it again.

In 2005 a song was released by Tim McGraw, Live like you were dying, I found the song “inspirational” and made it my ring tone on my cell phone. Every time someone would call I would be reminded of the lyrics… if tomorrow were your last day and you had eternity to think of what you would do with it… what would you do with it? Then my phone rang with a call I never expected… Nicole, Derek’s been in an accident. His neck is broken. My phone rang so many times over those following weeks. Updates were needed, long distance reassurances, teary-eyed phone calls from family and friends. The same news that had broken my heart the day my brother broke his neck was told countless times. I would sleep with my phone by my head. Not that I slept much those first few months. But my phone would be next to my cheek as I laid my head on my pillow and prayed to a God I had never really been on speaking terms with. I prayed with all my heart that my phone wouldn’t ring. With botched surgeries, drug induced comas, lungs that wouldn’t inflate on their own, kidneys shutting down and deteriorating skin there was always the possibility of that final phone call. It wasn’t long into the ordeal when I began to wake up sweating in the middle of the night because I had been dreaming that the song was playing and I would think my phone had been ringing. It was clear that the song had to go. How could I “live like I was dying” when there was a very real possibility my brother was.

My brother, my bothers… There will probably never be three people that have had an impact my life like those three. There were many times I wanted nothing more than to be any only child, but in truth some of my fondest memories are found with them. There is no one on this earth I would have rather stayed up late watching TV on a pull out couch with, playing spies in the woods and sleeping on their floor when I had a nightmare. Having them near kept me sane when the life surrounding us was crazy. For better or worse these were the people who I knew would always be there for me and now one of them was perilously close to leaving me…

Just because I stopped listening to the song doesn’t me I stopped thinking about it. I often thought… what would I do today if I knew tomorrow my life would change beyond comprehending… I would want nothing more than a crisp fall day in Maine. Wrapped in a warm sweater, sipping mulled apple cider and being surrounded my family and friends. I often hoped that Derek would have done exactly what he had been doing, enjoying a beautiful day at the beach with his friends. The truth is, none of us know… very few people get a warning that their life is about to change for good or bad.

We all changed that day. No one in my family will ever be the same. I can honestly say that from that day forward I have never been more proud to call these five people my family and those three young men my brothers. Mom held vigil, Dad held down the fort, Dustin and Shane kept everyone grounded and Derek fought for his life. For the first time in my life we were an untied front and felt like the family I always new we could be. As someone close to my family always says, we fight hard but love harder.

Love, Nicole

New Blog

2007-11-19T11:37:00.001-08:00

Hey Everyone,

Please look here from now on for updates from Derek. We will also be posting to this blog while we are in China. Feel free to leave comments... I know how much Derek loves hearing from you!

The O'Brien Family