I have been home now for over three months and my vision continues to improve slowly. A few short weeks after returning home I went to a football game and could see the time clock. We always sit in the same seats and I could never see that before so I knew that was a change. We were very excited!
A major change is that my eyes constrict normally now. Before going to China, I couldn’t go from sunlight to a dark room and find my way. One day we went to a dark restaurant in which I have never been able to maneuver and I was able to find my way with no help. That is a wonderful improvement that many may take for granted unless they have been in the difficult situation of not being able to find their way.
After Christmas I pulled out a manual that I previously read with a monocular and a magnifying glass and was pleasantly surprised to find I no longer needed the magnifying glass. I could read it easily with just the monocular.
We have a beautiful mountain range where I live and since the snow has fallen I am always amazed when I see how beautiful they look. At first, I kept asking my husband why he thought they looked so amazing. it took me the better part of a day to realized that it was the improvement from the stem cells. Now I am surprised every time we drive into the city nearby to see how rugged and huge they look.
In general things do seem a bit easier for me. I chopped apples the other day without bending over the counter and I seem to recognize people easier. My trip to China was incredible for me as well as my Mom and Daughter. We have no regrets in our choices and wish the best to all those who choose to go.
January 28th, 2010
We have been home for two days now and we are so happy to see our family, our bed and our favorite foods. The journey home went pretty well minus one delay. We all took cat naps but that was it. Gracie is still having some jet lag as she was awake for four hours in the night. It was brutal!
Here are the results of the ‘Field of Vision’ tests I had when I arrived in China and when I left. My vision in my right eye still isn’t good enough to do this test, so the results only show the changes in the left eye. When I went to China, my vision was concentrated in a small pinpoint and you can see from the pictures that it is expanding. While it is expanding, it is still not as strong as the central pinpoint of vision. I am just starting to notice contrasts outside of my regular vision field. Hopefully the improvements continue over the next 6 – 9 months though.
Before
After
I 
was in hopes that they would run other tests that I could compare to the test they ran when I arrived, but it was a bit of a lesson in China’s health care. They didn’t keep clear enough records in the institute of exactly how the previous tests had been run, so they were run just enough differently from a little bit different angle that made them incomparable.
While it is good to be home, we do miss the many families we met in China. After arriving back in the USA, I continued to feel like I was listening to a foreign language as I listened to people visit in airports and on the planes about their lives. I finally realized that while we met so many wonderful people and grew so close so quickly, I knew nothing about what most of them did for employment, what kind of home they lived in, the brand of car they drove or even what their hobbies or political views were. The closeness you feel with the families you meet definitely go beyond any experience I have ever had or probably will ever have again. I am so grateful and will SEE the world different forever.
October 16th, 2009
Today was our last day in China. Mom and Gracie were busy saying good bye and I was busy getting my last tests. My eyes are very dialated, so I will email more information later. I will say that the two tests I had show my visual field has expanded and there is definitely more activity in my right eye. I will send more information within the next few days. Thanks for all for the love prayers and support.
October 13th, 2009
We had a busy day. I have been getting up at 5:00 every morning for the past several mornings to go do Tai Chi in the park. The people are so nice. They were teaching us Tai Chi as best they can in the short amount of time we had, but today was my last day. Tomorrow will be so busy and I want to get some rest before the long plane ride, so I took a little notebook that had a picture and logo of the state of Idaho on the front of it to show my appreciation. He laughed and had me teach him how to say Idaho. It was truly an amazing experience!
We started getting serious about packing which was loads of fun. We are busy visiting with families, exchanging email addresses and taking pictures of everybody we have met so we can keep in touch after we have gone home. I think we have made new friends from 7 – 8 different countries around the world and probably 12 – 15 different states across the country. We have learned so much about different cultures and the different ways people live their daily lives, but what we have learned the most, and I hope what Gracie remembers the most, is that deep down in our hearts, our minds and our spirits we are all the same and want all the same things in life. We want to be happy and healthy!
This morning Mom and I participated in an interview with a member of Beike’s staff. The interview went well. It will be available in 1-2 months on www.vimeo.com. They spoke with me about my life, my ONH, my reasons for coming to China and my experience here with the culture, the company and the stem cells. They interviewed Mom to learn more about the care taker’s role because this is a very important role in this setting. They asked me questions about how I chose my care taker. Of course, that was an easy decision for me but I know for some it can be difficult and complicated.
The Chinese culture assumes that a great deal of the work will be done by a care taker or family member. When a patient is in the hospital, meals are not provided; laundry service is not available, and what is considered reasonable accommodations in the USA are not so reasonable here. Patients considering this journey need to understand that they need to ask every question about what is provided and available from medications to accommodations.
We went to a great restaurant tonight with some friends called Hot Pot. You pick out the meat you want and they cook it right there at your table with a big bunch of veggies. They bring you rice and WOW is it tasty. It was actually the best food I have eaten in China. We had a great time.
October 12th, 2009
We are finishing up our last bit of sightseeing and shopping today. We only have three more days and it is time to go home. We are very excited. Going home still seems so far away, but I know we will be busy between now and then. Tomorrow I will finish up my evaluations and such here in the hospital. I am not sure what that will entail. Tuesday I will go into Qingdao to have a couple of tests in hopes of getting better documentation on where my improvements are. It will be interesting to compare the before and after.
October 11th, 2009
We had a great day of sightseeing. I had acupuncture this morning…I only have two left…and then we headed downtown Qingdao to see a few more sights before going home next week. Our first stop was the oldest Buddhist Temple in Qingdao. It was very cool. We participated in a Buddhist prayer ritual while we were there.
We actually got stopped by a Buddhist monk who asked if he could take our picture and said that Gracie was the most beautiful girl in China. She was very proud. We learned a lot and it was very impressive.
Next we visited the only Catholic Church and Christian Church in Qingdao. They were beautiful. We were unable to go inside the Catholic Church because of a wedding.
We went up in the bell tower of the Christian Church and got this incredible picture of a light house.
We spent some time walking around the city just to experience the culture and while walking by a primary school we discovered that they were having class. We lifted Gracie up so she could see inside the window as they were having music class. Michael, our guide, explained that due to the long holiday they just celebrated in China, the children had to go to school on Saturday to make up some of their missed time. Gracie didn’t think that sounded like much fun!
Gracie really wanted to go to McDonald’s for lunch. She has heard so much about it from the other children in the hospital and now she thinks it is cool that she has been to McDonald’s in two different countries. I decided that after a morning of filling her little mind with culture we could fill her little tummy with a big mac.
We also went to a Castle. I forget how many flights of stairs we climbed. Gracie said she would like to live in a castle but she wouldn’t want to clean it. I had to agree. We went out on a deck at the top, and we could see a wedding out on the water.
Our last stop was a four-star hotel where we visited the 25th floor to see the view in a rotating restaurant. We got some amazing photos and had a great time.
October 10th, 2009
Dr. Tony gave me another eye exam today. My left eye has improved a bit more. Probably about four inches total. Dr. Tony says that my right eye is also getting better but not as much. He encouraged me to cover my left eye to try to develop the vision I am gaining in my right.
Today was my last treatment. HURRAY! Everything went very well. The IVs are a pretty painless process. We go into a room – usually three patients at a time – and there are two little couches and a couple chairs in there for us to sit on. We have to wear special little slippers over our feet, and then we go in and they hook each of us to a bag of saline solution. Once the saline solution is gone, we get hooked up to our ‘liquid gold’ as we call it in the hospital. We always encourage the nurses to squeeze every drop of the stem cells or ‘liquid gold’ out of their little bags and into our IVs. Next we get another bag of saline solution and we are all done. Stem Cells thrive in liquid so that is why they keep us so hydrated.
Michael and I went back to do Tai Chi in the park this morning. The man who leads it and his wife were so nice to me. Everybody gathered around me for probably 15 minutes and they taught me the first position of Tai Chi. I felt a bit awkward and funny with all the attention, but I had a blast with them. The only thing was that they were all watching me and giving me instructions in Chinese to do about 16 different steps at the same time and I was trying to concentrate on everything my translator was telling me while they kept telling me, “You must relax; you are very tense.” I had to laugh to myself. Here is a picture of the instructor’s wife that worked with me the most. She is amazing to watch.
Gracie was so happy this morning when they brought in some mail we got from home from her Grandma (Betty) and her little friend (Shelby). Her Grandma sent several cards to Gracie, Mom and I and we had so much fun reading her little notes. Shelby drew Gracie a beautiful picture that we hung on the wall in our room and she made Gracie a little book about all the things they can do together when we get home. It made all of us smile! We are so blessed to have so much support from home. A journey like this is definitely a group effort and the support we have definitely could fill the space between here and home. THANK YOU SO MUCH TO ALL!
October 9th, 2009
When I was in college I studied a defensive style of the Martial Arts. It was then that I was able to learn so much about Traditional Chinese philosophy which has served me so well in my travels the past month. During my time of studying, I often imagined how amazing it would be to go to China and watch people come together early in the morning to do Tai Chi in the park. Tai Chi is, I would venture to say, is almost a spiritual or meditative form of the Martial Arts. The purpose is to discover your Chi or true power within. Chi is the energy in our bodies that moves the blood and is essentially responsible for every move we make. Chi is more than energy though. To a Christian, I have heard it is comparable to the Holy Spirit within us. So this morning I was up and on my way before 6:00 AM to go to the park with Michael, one of the translators with Beike, to do Tai Chi in the park. Today we just watched, but the instructor invited us to come again tomorrow and he will teach us the 24 basic positions of Tai Chi. I had such a great time. I never made a bucket list, but that would definitely have been on it if I did.
October 8th, 2009
We had a quiet day in China today. My acupuncture schedule begins at 8:30 in the morning so we are all done and ready to start our day by 10:00. Gracie and I usually spend the later morning working on her homework, reading and writing in her journal. It is fun to talk with Gracie about her perspective on her travels in China.
We went out for lunch this afternoon. Then Gracie went with another family to go swimming. While she and another little girl were showering in the locker room, the lights went out. There were no windows so it was very dark. They were pretty scared at first. Gracie couldn’t even find her clothes, so she wrapped herself in a towel and they opened the door to get some help. The Mom and Dad that they were with were right there to help them, so they held the door open to shed some light on the situation and the girls were able to get dressed. There were just a few places in the area that lost power. Gracie thinks the batteries must have gone out in the locker room. When she got back to the room, she told Grandma and me, “Well it was quite an adventure today!”
Every day is an adventure. It is nice that families come and go at different times, because the veteran families always help out the new families by showing them the ropes. There is a lot to learn and adjust to in a short amount of time. We come with tremendous jet-lag and they give us a tour of the hospital and area. Our minds are full of information about our medical treatment, doctors, and schedules. Plus, we are adjusting to new sights, sounds and smells and learning a new culture. They don’t provide meals in the hospital either. This is probably best because we probably wouldn’t necessarily like the food anyway, but we then have to figure out where we are going to eat. What we are going to eat. How to purchase any groceries and how we are going to cook anything. They provide a community kitchen with two hot plates, a toaster oven, toaster, small coffee pot and rice maker. Most of it is in Chinese though, so it isn’t very easy to figure out how to use them.
The hospital does provide a laundry service, but there is a charge and it takes 2-3 days to get everything back so we purchased a little bin and some soap and have been doing our own laundry. Mom washes and washes to get the soap all out. Then we hang everything in the shower to drip dry. Once it has stopped dripping, we hang everything in the window to dry. The sun has kept things pretty warm here, so things are usually dry in about two days. The blessing in it all is it makes the time go by.
October 7th, 2009
I had my last spinal yesterday afternoon at 3:00. Everything went really well and now I only have one I.V. left. I will have it on Friday and then I am all done. HURRAY!
Here is a picture of my friend Kenedee. She came in to visit with me while I had to ly down for six hours. Kenedee has ONH like me so she gets massage therapy too. In the picture she is massaging my arm. She loves to give people massages. Today I feel great so Dr. Kenedee must be a very good healer!
This is a picture of Gracie and her friend Angelica pushing their little friend Donniela in the wheelchair around the hospital. It is just a wheelchair that the kids play with to make the time go by. It is fun to watch all the kids play together.
Gracie has been playing in the hall with the nurses this morning, so they are teaching her how to be a nurse and take temperatures. They asked her to come in and take mine. Dr. Gracie determined that my temp was probably fine because it wasn’t as high as the nurse’s was.
October 6th, 2009
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