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I woke up this morning around 7:30 a.m. and all was quiet. We have a hospital bed in the room for Nathan to sleep in and a double bed for us. I was lying there watching Nathan and he started to wake up. He yawned and started stretching his legs out straight which I have seen plenty of times before. However, this morning was different. I continued to watch him and he started stretching his arms out too. Normally, his elbows are much too stiff to bend without assistance in the morning. I stayed silent and he then began to lift his arms up over his head and straighten his arms into a full body stretch. I have NEVER seen that before. He smiled and seemed liked it felt good. I decided to speak to him and he roll towards me and smiled. Is this stem cells at work? It is new and following stem cell therapy is all I can say. I know this seems small to some, but this is exciting to us. We have definitely seen improvement in his right arm. He is holding toys longer and longer to examine them. He held one last night for over 45 minutes before it dropped. I have found some hand toys that have parts that move if Nathan moves his arm. He has figured that concept out and he really loves it. He seems so mystified by holding an object and checking it all out. It is thrilling to watch from the sidelines. If Sue, Nathan’s Occupational Therapist, is reading this blog, you better be ready to work when Nathan gets home. He has exciting activities to already show you and our hope is it will continue to expand into even more with your help.
Some nice folks on the hall had room for one more person in a hospital van headed for Downtown Qingdao this afternoon so they asked me to come along. Nathan had therapies and Ken’s foot is doing better enough that I felt comfortable enough to leave. It was a pleasant outing that consisted of visiting Jimo Road for some shopping. It is similar to a huge indoor/outdoor flea market where bargaining is common place. The hospital’s van driver, Charlie, is great for negotiating the best price. He is a pro at haggling. We also visited May 4th Square and the Olympic Sailing Complex. This is where the 2008 Olympic Sail Boating events were held. It is very beautiful to stroll along the boardwalk. Later that evening we had dinner at TJ’s Mexican Restaurant. Today was one of the most pleasant days I have spent in China.
More pictures of today’s trip will be posted tomorrow.
September 9th, 2009
Nathan was a little uncomfortable through the night. I think it was more from not being allowed to eat prior to the spinal injection than it was from the injection itself. His acid production was a challenge to say the least, but he was a trooper. As well, the Chinese food that we ordered for lunch today was too spicy! This is a gamble we have to take sometimes. Nathan nor I could eat it so his belly was not as full as much as I would have liked it to be on an injection day. Chinese food is just as spicy as any Mexican food I have ever tasted. We had a dish the other day that as long as you were eating it was tolerable, but the minute you stopped you could blow fire. I am running low on my food from home and I am looking forward to seeing Sharon Gates arrive. She is bringing Nathan some supplies.
September 8th, 2009
Happy Labor Day from China! Nathan had a spinal injection today and he has another one on Friday. Nathan is not allowed to go out on injections days or the day after the injections. He is such a good patient. This morning the pediatric neurologist professor made rounds with the doctors and evaluated the pediatric patients. I got the impression from his facial expressions that he thought he was giving me bad news, but he did not. He reviewed Nathan’s medical records and told me it would be very difficult for Nathan to walk before he was at least 10 years old and it would be slow walking even then. I don’t look into the future that far or I sometimes hyperventilate. I try to stay in the current moment and not worry about all the unknowns. That is just wasted energy. I have been told that the word acceptance does not have to be in my vocabulary, but the word coping does. The fact that the neurologist thinks walking might be a possibility is encouraging enough for me. I don’t believe in false hope. You either have hope or you don’t. He also told me that he thought Nathan had an extremely good chance of talking with proper speech therapy!! Nathan is continuing to vocalize and babbling up a storm. I was thrilled with the news he had to deliver. Everyone on our hall did not receive good news so I feel very blessed.
I am very excited to let you know that Nathan’s new girfriend, Julia, from Brazil that you saw in an earlier blog has begun to see light. According to the doctors, her pupils have started to dilate. We are so happy for Julia and her family. She bought Nathan a stuffed horse and gave it to him. She wanted to get in the bed with him and then decided to plant a kiss on him. Julia is a hot mama and I’m going to have to watch out for this girl. If her vision improves enough for her to actually see how cute Nathan is, I don’t know what will happen. She really is seeing light because she now turns her head when the camera flashes. She says it hurts her eyes…..which is GREAT! I tested it myself and did not tell her I was going to take a picture.
This weekend was kinda laid back. It was much cooler outside and reminded me of Fall. China has the normal four seasons like we do. It snows here and gets down into single digits. When we arrived in August it was humid and in the upper 90′s just like home. Since it was a nice temperature we ventured out to the local mall and had lunch at Pizza Hut. Pizzas here typically have corn and pineapple on them. Lots of them have various fish options that we are not accustomed to seeing as options. It is interesting to see the differences in the menus.
September 7th, 2009
We have received some good news from BB&T. Ken has been granted permission to stay an extra week with me to help me get home. Some nice BB&T person must be reading this blog and feels sorry for me having to take care of Nathan and Ken. Someone knows I am tired. Thank you to whomever is in charge of this decision at BB&T! Our good friend, Sharon Gates had volunteered to come over my last week to help me get home. Now Sharon and Ken will be here my last week so I am hoping to find a much needed massage salon.
A large group of us from the hospital went to The Holiday Inn to eat dinner tonight to celebrate another week successfully survived. It is amazing that such a large group of different nationalities gets along so well. Ken pointed something out to me tonight that I had not really noticed about Chinese people…no one is obese here. We truly have not seen any one even close to being fluffy. There is no such thing in any of the fast food restaurants such as upgrade to a super meal. The proportions are much smaller than in the U.S. The buffet bars do not have an excessive amount of food on them so they have to constantly replenish the food. The Chinese are very thrifty. When you go to the grocery store you need to take your shopping bag or you will have to pay $.20 per plastic bag to carry your purchased items. That is true for Wal Mart too! Yes Dr Wells, I have found Wal Mart in China! Could you imagine how much money I would have to pay for plastic bags alone yearly for Wal Mart? Below are a few pictures from the week.
September 6th, 2009
The majority of you don’t know that Nathan had a brain MRI just prior to going home from his 6 week stay at Brenner’s Children Hospital in 2005 after his birth. It took the doctor a couple of tries to convince me that a MRI was needed. I just wanted to go home and take one day at a time. Finally, I agreed to it as long as he would simply put the results in Nathan’s chart for the future. He said “No, if you don’t want to know the results, then I am not ordering the MRI.” I knew I really did need a baseline so I agreed under the conditions that he only went over the results with me. He did not like my negotiating, but he finally said OK. I was told a couple of days later that Nathan had suffered major damage in the section of the brain that controlled his left eye. It was unknown at that time if he would be blind in that eye or not. The right side of the brain controls the left side of your body and the left side of the brain controls the right side of your body. Nathan’s left side of his body is weaker than his right which is consistent with the MRI results. Shortly after you receive bad news at Brenners, you are very strategically visited by a counselor to see how you are holding up with the news. My angel showed up in the form of a very nice older nurse who was retired. She volunteered in the children’s department and probably gave me the most valuable advise that anyone has ever given me in my life. She said, “Sugar, don’t you let anyone put a patch over that baby’s eye. You make him work that eye and you stimulate it with lots of colors. You make his eye work hard and he will use that eye one day.” She ended her conversation with me by asking me to not mention her advice to any of Nathan’s doctors. I will never forget her face. After coming home from Brenners, his eye was very noticeably squinted. It looked liked a lazy eye. After the MRI results, I resigned from my job, but Dr Wells said no. I informed him of the MRI results and he said I could bring Nathan to work with me and we would take one day at a time. I think Nathan is so loving because he had about 14 mommies at work that loved on him all the time. I constantly encouraged everyone to show him objects in order to stimulate Nathan’s vision, but they did not realize there was more to it until much later. I feel guilty today because I feel like I neglected his lack of motor skills in the beginning of this journey. His arms and legs moved so in my world they were OK. I never allowed an eye patch and absolutely love it today when people tell me he has beautiful eyes. I stimulated it with lots of pictures and colors and it slowly opened up more and more each day. To this day very few people notice any deficiency in that eye unless they are trained in working with special needs kids. Everyone here in China keeps telling us Nathan looks different and we have figured out it is his eye. Since beginning his stem cell treatments his left eye has fully opened up as wide as his right eye. We are convinced that he has started some repair in that section of the brain. I think the eyes that were beautiful when we left the U.S. are going to be even more gorgeous upon our return. After a spinal injection of stem cells, the spinal fluid travels from the spinal column to the brain and says hello to vision first. We pray some of the stem cells keep on traveling to the speech, gross and fine motor skills sections also. We know it is a gamble, but it is one we are willing to take. For us, small improvements are better than none at all.
We love getting emails and blog comments from you guys!! It makes us feel connected to HOME. Thanks to all who have sent us messages. Nathan’s blog has been forwarded all across the U.S. Everyone keeps asking if that is OK with us and it is perfectly fine. I see that as being more prayers for Nathan. There have been numerous questions about Ken’s current ankle condition. It is slowly going down in size. He and Nathan were both on therapy tables side by side today while I took pictures. Ken was having acupuncture again while Nathan was having electric sound waves. A wonderful new friend from Brazil, Camila, was reading to Nathan for me. Below are some pictures for you to enjoy. Please continue to keep us all in your prayers!
September 4th, 2009
Nathan is so much looser today. I placed a rattle toy in his hand that I purchased at Lotte Mart (the local Wal Mart) tonight and just watched him. He worked and worked to bring his arm up and bend it coming towards his face. He figured out that the toy rattled and he was actually trying to shake it. I have never seen that before. He was able to bend his arm enough to get the rattle to his mouth. According to his laughs and giggles, he thought the rattling sound was pretty funny. He held the toy for over 30 minutes examining it and working his arm. I just sat back and watched. I quietly found the camera so I could share it with you too. I know this probably seems insignificant to some of you, but this is huge for us. This is self entertainment and discovery. Trust me, if it sounds like no big deal to you, then you are taking a lot for granted in your life. He is “hollaring” even louder today. It is like he has suddenly discovered that he can make high pitch noises and he is definitely enjoying making them. Thankfully, everyone on the hall is enjoying listening and watching him. Nathan’s facial expressions are full of accomplishment.
September 3rd, 2009
Nathan had his spinal injection today at 4:30 pm. He was such a trooper. We only had morning therapy since it was a stem cell day. Afterwards, he slept for almost 2 1/2 hours so we did not get to bed until around 1:30 am. We have been very blessed that Nathan has not run any fevers following the stem cells. He has really starting moving his arms more and babbling (baby talking) up a storm. He was yelling at me this afternoon and mimicking my sounds. I loved it! I don’t dread injection days as badly as I did in the beginning. The anticipation of what good progress might happen is now over shadowing the dread of the IV. I hate the IV part of it for Nathan! Since he is a chunky monkey he is a very hard stick for an IV. There is one nurse named Linda that is very good at finding a vein so I have requested her to always attempt first. They have been having to place the IV in his foot. Below you will see “Blue” from Blues Clues accompanied Nathan to the procedure room as his guardian angel.
September 2nd, 2009
It is a sad day for us. Many of our new friends are departing for home today. They helped us get adjusted to hospital life in China and will be thoroughly missed! We cheered for each other’s accomplishments and have been their to comfort each other when we were homesick. We are the old timers on the hall. It is now our responsibility and privilege to welcome and take care of all the newcomers. It is amazing how fast a room is filled once someone exits. If someone checks out in the morning, the room is generally filled that night or the next morning depending upon flight arrivals. I love all the flags representing each patients nation on their room door so I decided to take pictures to show you our neighbors on our hall. It reminds me of the Olympics and the opening ceremony. The athletes are proudly waving their country’s flag. All the patients here are definitely fighters wanting to win. Ken & I are obviously not the only people in the universe who have been researching stem cells. We have met new friends from all over the world. What an opportunity!
September 1st, 2009
We are to the beginning of another busy week in therapies. Since Nathan did well from his spinal injection last week Dr Wang has agreed to do another spinal this week instead of an IV injection. That is scheduled for Wednesday. You get your week’s schedule on Sunday. Today marks half way for Nathan’s and my stay in China so we can begin our countdown for coming home. I really appreciate all the comments about the blog. It is so good to hear from friends at home!!!!
This blog is dedicated to all the men who are still boys at heart reading our story. I made Ken go to Century Park just down from the hospital this evening for a picnic dinner from Kentucky Fried Chicken. Century Park is beautiful and very relaxing. Soft Chinese music is playing and the flowers are gorgeous. On our way there Ken had to keep taking pictures of the construction vehicles and cranes. When Dr Wells was here he was amazed by all the cranes also. It is not unusual to see 4 or 5 cranes atop a building under construction. You literally cannot go one block without seeing something being built.
August 31st, 2009
Viewer discretion is advised!!!!!!!!
Below are pictures from The Qingdao International Beer Festival this weekend. It is somewhat like a state fair Chinese style with rides and food, however, no cotton candy or funnel cakes. I would have to be intoxicated to eat bugs, beetles, scorpions, etc.
August 29th, 2009
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