| Jan 5, 2005 6:00 p.m.
Bless the Lord oh my soul and all that is within me! Bless HIS holy name! Psalm 103:1 The POP TARTS arrived today! James' protein drink as well! I also had some beautiful Tiffany artwork in the box. I am sure it will make her dad feel better soon!! James did not have a good night. He was awake and restless until about 4:00 a.m. and then he only slept about 2 hours after that. He was not feeling well at all today and did not want to eat. He just thought he was on IV's before. They had three going at once today. That is what you get for not behaving. They are giving him glucose, amino acids and sodium chloride. They are very concerned with his nutrition. He was not strong enough to start therapy today. He has told me more than once he feels stir crazy. They are going to give him something for the anxiety tonight before he goes to bed.I think if he sleeps and eats he will feel better. It is easier for us to say than it is for him to do. He needs to be strong enough to start therapy. I know it would change his attitude. The others that had the surgery the same day are doing great. My friend Albert starting walking again. Small steps but we are all thrilled for him. Way to go prayer warriors!! It started snowing today. It was so beautiful!! Having lived in Texas nearly all my life, I love seeing the snow. I am in the minority here. All the other patients and families, most from cold parts of their countries, said I would grow tired of it. Maybe so, but today, I was so excited to see it fall. I need a sled!! and my kids!! The fun we could have..... Thanks for all your prayers!! Carol Jan 4, 2005 5:00 p.m. Today has been good. Nothing to report really, which after this last week may not be such a bad thing. The day seemed long. I think the group (the other patients too) felt the same way as well. Everyone seemed a little restless and hungry. Enter stage right: Ray to the rescue. Ray brought several bags (they have no buckets) of chicken from KFC. He was the hero!!!! Leave it to Ray to make a party. I guess one really important thing I forgot, James said he is swallowing easier. Yea!! Little things make big difference! I have had several emails asking for more details about the surgery. I can not read previous website updates so I may be repeating some information. Originally we were told we would be here 7 to 10 before James would have surgery. Evidently the stem cells are abundent at this time. So the surgery was sooner. Your guess is as good as mine as to why they have an abundance of cells. Those kinds of questions are difficult to get answered because of the language barrier. Yes, this surgery is a what we call a "study" in the US and they make that abundantly clear. That was in writing and in plain English. James was wheeled into a room that was small and dingy. He said he felt it was clean but they rolled him close to the window for light. They drilled two @ 1mm holes in the top of his head. James said either he had a hard head or the drill was weak. When they were drilling he said the drill made a sound like it was losing power. They put the drill in reverse for a moment and then they continued. Over the next weeks they will moniter James and they will begin physical therapy, speech therapy and Chinese medicine therapy. They have not started all of that yet because of James' weakened condition from the cold or virus he had. When we get back to the States we will continue physical therapy and speech therapy and whatever else they suggest. The doctor did tell us today to be patient. "James has very small muscle." Really? And as far as the patient thing? He doesn't know James very well now does he. And for sure they don't know our God!! I hope that answers all the questions. UPS called today. They needed James' passport number so the package could clear customs. We are still waiting for the package to arrive. It is times like these I remember we are in a Communist country. Let's hope for tomorrow for its arrival. Praising God!! Carol Jan 3, 2005 8:00 p.m. James is really doing well this afternoon and into the evening. He still has been coughing at times and we think he may be allergic to the milk. We will find out tomorrow by simply eliminating it from his diet. Go figure. The taditional Chinese Medicine doctor, as opposed to the modern Chinese doctor who did the surgery, saw James today. He has been in several times before when James was so sick and layed his hands on him and said, "He is very sick!" Really? Tell me something I don't know. All kidding aside, he is an older man and has a manner that exudes great confidence. He began massage therapy today. After he finished examining him, and working on James, he announced through the interpreter, "the surgery worked! (We will AMEN that!!) Say what you want about the Chinese but I am liking those sweet words in any language. It is still the New Year Holiday, so no package today. That is really too bad too. I hadn't eaten anything but some candy bars and a slice of cold pizza in 48 hours. James and his parents insisted I go back to the hotel for something to eat. I was happy to oblige them. Unfortunately, I found the Asian version of Montezuma's revenge. Thanks to some quick acting drugs I am a little drained and will spend the night at the hotel for needed rest, but I am going to live. Probably too much information but a prayer about protection from any bacteria or parasite from the food we eat or anything we drink would be greatly appreciated!! Let me state that again, REALLY appreciated!!!!! The prayer is so working. Please keep it up!! Carol Jan 3, 2005 3:00 a.m. James is sleeping better but is unloading IV fluid about every two hours. So, while I am on a break, I was reading my email and website postings. I am overwhelmed with how far, wide and deep the website has traveled. I wish I could respond to each of you but for now that is impossible. Please know that James and I love hearing from you and we are blown away with support. I love those blasts from the past. It definitely reminds us of some great times. Sometimes we forget how much fun we really could have before ALS. Don't get me wrong we can still have fun it was just more spontaneous then. (I can't figure out if there is spell check on this thing so forgive me if something isn't spelled correctly. By the way, don't check for grammar either.) Well that is all for now. It's Monday here and I am hoping in a big way for a package to arrive from home. I think there are POP TARTS. So don't laugh you would be excited about POP TARTS if you were here too. Love, Carol Jan 2, 2005 2:00 p.m After a rough night and a rougher morning things finally seemed to have turned a corner this afternoon. James is allowed to sit in his wheel chair for small amounts of time starting this afternoon. It changed his whole attitude. The doctor who has had very grave concern on his face when examining James finally smiled today when he saw him. I told James he must be doing a whole lot better. The doctor said he would start therapy on Tuesday. They would go slow because James was still weak. However, James lifted his right leg today while laying down. He has not done that in monthes. He is also very excited that his neck is feeling stronger. Some of the other patients are seeing some improvements as well. It is very exciting. There is one patient though, who is very discouraged. He has gone backwards. His name is Alfred. Please say a little prayer for him. I realized talking to my family today, I failed to mention the dorm type atmosphere that is taking place here. We have a place to gather, discuss and encourage one another. The two ladies next door, sisters, are a hoot!! They make me laugh a lot. Linda speaks using a device. She types and the machine speaks. It is pretty cool. Her sister, Diane is just down right funny. I am glad God provided me with humor. That's all for now. As always thanks for all the prayers and positive thoughts. Love, Carol P.S. I still need Freebirds!!!!!!! |
| Updates - January 2-5 |
| Monday Jan 10,2005 7:30 p.m.
It was a busy busy day. James is still on IV's for a sodium defiency but the number of IV's was reduced. He is eating well and he slept really well. The big doctor, Dr. Huang came in and told him he looked good. Then he said get up and walk around the room. After a slight hesitation,James and I looked at each other,and I said,"Walk in the name of Jesus!" So with Ray in the front and me at the back, (by the way he is still cute from behind) and a doctor and nurse on his side, he took about 6 steps. It wasn't pretty but he moved his feet. If it wasn't a work out for him, it was for Ray and me. We are pleased. Pat and I played the hero role today. We went to the other side of Beijing to an American supermarket. I am not sure if I would call it super but it was a welcomed site. Kraft, Prego, Dr.Pepper was awesome to see. We also found a Subway. We brought several sandwiches back to share. We are class favorites today. The Beijing we saw today is very modernized.I know for sure we are in the ghetto at the hospital. You can still see a lot of the old China but it is like the modern China is literally swallowing up the old. In a one mile block there were nine cranes building high rises. It is obvious they are preparing for the 2008 Olympics. They are cleaning up the city for the Olympics as well as they are becoming environmentally aware. We were in a part of the city that had more tourists. It made it easier to find English speaking people to help us. Did I mention I found the Starbucks too! A taste of home for four bucks. You gotta love it. I hope to send pictures tomorrow. I will see if I can be computer literate enough to succeed. Carol Sunday Jan.9,2005 5:00 p.m. James was able to sit in his wheel chair today for a few hours. This made him very happy. He told the doctor he was ready for therapy. The doctor told him he felt he was still to weak. James told him no he wasn't and then flashed him one of those cheesy grins. The doctor said, "Well maybe a little physical therapy." Scooooooorrrrree James. The doctor also took out his stitches. That about covers the day. Yea!!! Have a great day!! This is the day the Lord hath made rejoice and be glad in it! Carol Saturday Jan 8, 2005 James is feeling okay today. He is well enough to fight them about the IV's. He lost the battle today because they said his sodium levels were still too low. He asked them how to get them up and they told him to eat and drink more. Guess what the ole boy is doing? It helped tremendously too that Pat and I met a friend of James' sister who is missionary. She was wonderful. She took us to TGIF (Friday's). Everything was written in English, everything looked American, the food was American, the wait staff was Chinese, but they spoke English. I ordered the biggest hamburger they had!! We brought back potato skins and fajita's for James. We were in heaven. She also helped us find a polyester comforter to replace the down comforter James has been using. It's amazing the difference since we changed the pillows. So we decided to change the comforter too. The progress James is making is small but welcomed. We really could tell a difference in is abillity to chew and swallow today. He also licked his lips for the first time in who knows how long. The little things are a great joy. We have loved reading email and the guestbook. We had a rash of Fightin' Texas Aggies join our battle after Coach Fran posted our email on his web site. How 'bout that Aggie Spirit in action. There is a story in the Bible about Moses and the Israelites going to battle with Amalekites. Moses is at the top of the hill with two friends Aaron ahd Hur. The Israelites were winning the battle as long as Moses held his arms up. If he put his arms down the Amalekites would start winning. After a while Moses' arms would grow weak and tired and his friends began to hold his arms up until the battle was won.(Exodus 17:8-16) You are our friends holding our arms up. Thank you. Carol Friday Jan 7 2005 James slept better last night and he was more fiesty in the morning. Everyday the doctor comes in and asks James, "How you sleep?" Then he asks "How much you eat?" This morning, before the doctor could open his mouth, James asked him, "How you sleep?" Puzzled the doctor looked at me and told him what he said. The doctor still puzzled said fine. Before the doctor could get out another question, James asked him, "How much you eat?" The doctor fell out, he told James, "You funny guy, I think you feeling better." I am glad because before he was better, he had a breathing crises first. All 5 doctors were in the room with us along with 4 nurses. After much Chinese discussion, which now is beginning to be a little annoying, James was a little better. They told him to eat and drink more.It seemed to resolve itself. But again, I know it was all the prayer. I told James I knew he was bored but really? One of the other patients came to check on James. He asked me in ALS dialect,if he had allergies. I told him yes. He said the pillow he was sleeping on was a feather pillow. He had an extra foam pillow he let James use. Guess what? He slept and was breathing better. And he is sleeping today. I made a call home to our good buddy Dr. Don who eased our minds about how they were treating James and made a suggestion that is helping James. Also Ray went to Sam's for an air filter. James' color is good today. He's been a little pastey! Life is good!!! Have a great day!! za jian (Good bye in Chinese..How bout that?) Carol Jan 6, 2005 4:15 p.m. We started the day celebrating with another patient walking using his walker. He has been in the wheel chair for a year. He had the surgery two weeks ago. Everyone was cheering. He has a lot more muscle mass than James but it is still huge. I would love to tell you that your good friend James is better but he's not. So...they will take him for "tests' tomorrow. I will let you know, when I know, exactly what they are. The good news is that we had an interpreter today help us describe James problems so I feel much better. We are so spoiled in College Station with all the good docs and care we receive. Believe me, if you are one of those people I am talking about, we miss you! I am still confident they are doing everything they can do for James. They are giving him antibiotics, breathing treatments, checking his blood and giving him a ton of nutrition through the IV. They ask every day "How much urine?" and "Did he have BM you know number 2" It makes me laugh every time. He is eating a bit better but the sleep thing is still a problem. We received a package from the Behne's. It had several good things, including 2 sports pages. They were dated January 2nd and 3rd. James said he was so bored he was willing to read the nasty details about A&M vs. Tennessee game. I thought it would make more sick, but he handled it. Carol |