Went to McDonald’s for breakfast again and Jordan ate 2 big breakfasts again. I so wish I had her metabolism! Then we went to West Lake with the family from Georgia. We road the boats there and went to two islands; took pictures and then went on the the temple. It was a one way ride and you had to either catch the bus or a taxi to take you back to where you started so we had to call one of the interpretors and have them call the drivers to come and get us. You really need to speak the language when you are in a foreign country. When we left the park Mr. Lee took us to a nice restaurant so we could have a late lunch. It was wonderful–a French restaurant–we had beef tenderloin with scalloped potatoes and snow peas. It was the best meal I have had in at least 25 days. We then came back to the hospital and Jordan threw another “homesick” fit. This one was so bad the nurses came to check on her. She finally calmed down and ate another meal and has gone to bed. I know she is homesick and it doesn’t matter how I tell/show her how long till we get home she wants to go now. I am going to bed now because she has her last lumbar puncture tomorrow afternoon and it will be a very busy morning. Please keep us in your prayers. Love to all,
Sabrina and Jordan
April 20th, 2008
Another day done. I know that sounds terrible but when Saturday is a free day it tends to be long. We rode in the rickshaw thing again today. Jordan had a blast. We went with Susanna (Venz) to silk market and then we went with her to buy a formal gown for a party in her country when she gets home. This was a bridal shop as well and it was truly amazing and beautiful. You had to either take off your shoes or put booties on over them while in there. She found a lovely dress and talked them down to 1000 rmb. Divide by 7 and thats our cost. I am tooo tired to do it. Anyway we came back and I had ordered a pizza for Jordan and I fed her the toppings. We are headed to bed now–we are both exhausted and I don’t think either of us rests very well in these beds. I hope everyone is able to attend church Sunday because it is indeed a privilege to be able to go. I talked to Susanna today and she attends a church that believes in God only no Jesus nothing but God. Anyway I now understand what freedom means and I also understand just how lucky we Americans are. I hope everyone is well and will write again tomorrow. Please keep us in your prayers. Love,
Sabrina and Jordan
April 19th, 2008
We got to sleep in till 7:00 today. Jordan had electrical wave therapy at 8:30 and then we are free until 2:30. The family from Georgia arrived this a.m. They are here with their son 19 months old who is blind. His optic nerve never developed fully. Jordan and I walked to RTMart and picked up my pictures and got her some chicken–yes chicken again. When we got back we actually rode the elevator from the first floor to the 20th without having to stop and we were by ourselves the whole time!!!!!!! Small things bring great pleasure. When the doctor came in I asked him if he would stay in touch with Dr. Hull and Dr. Bebin and monitor Jordan’s progress in the States. He has no problem with this and I am so glad. She never ceases to amaze me with the accupuncture. Andy had to “bleed” her under her chin again today and she never flinched. Nurse Sophie was in here and told her over and over how brave she is. Sophie told me she is afraid of needles and will NOT do accupuncture. Andy did her P.T. today and he was pleased with her progress so far. We went to eat and night shopping with the folks from GA and had a ball. Mr. Lee and Mr. Hon drove us and they are soooo good with the children they pushed them in their strollers and kept them entertained. I had been before so I did not buy anything but Jenny and Ashley had a ball dickering for purses and backpacks. We have finished one more week and I am so excited to be that much closer to home. As I have asked all along please keep us in your prayers. Hope everyone is well. Love,
Sabrina and Jordan
April 18th, 2008
Today has been uneventful thank goodness. Jordan slept in till 8:15 and I did not say one word. Linda came for electrical wave and I ask her to wait and to tell Tina Jordan would not have therapy today. Everyone seemed to know about last night. Dr. Tony came in and removed her bandage and checked her back/neck/legs and everything was o.k. She and I walked to RTMart and picked up some eggs/bread/water–sounds delicious doesn’t it? I bought a 250 piece jigsaw puzzle of Winnie Pooh and she and I worked on it while she had accupuncture then she went to stand and then had electrical wave. So the only thing she missed was P.T. and as hard as she has worked that is ok with me. We are free for the most part in the a.m. as Tina has a dr. appt and will not be here so Andy will do her therapy after he does her accupuncture in the afternoon. Saturday and Sunday are free and I think we will go to the park one day and the other maybe we will look for the nurse/dr gifts. We are getting closer to coming home and I am having a hard time convincing Jordan she still has to do what everyone wants. Please keep us in your prayers. Lots of love,
Sabrina and Jordan
April 17th, 2008
Well, I am trying something new today. I am writing as the day goes. Jordan had a huge bout of homesickness today in P.T. and refused to work. I brought her back to the room and she went back to bed. The doctor came in and gave me alot of encouragement in that he thinks we will see a great deal of improvement in the next few months. Like we have always known when her brain can handle the motor skills better she will be able to have a more typical quality of life. Then Sid (translator) came in and told me that today from 4:30 to 5:00 they are cutting the power. He did not want us to be scared. Like I am not scared–a hospital with no power?????? They never cease to amaze me. It is 2:25 p.m. now and Jordan is back in her room after her lumbar puncture. 4 down and 2 to go. She is such a trooper all she does in the trtmt room is whatever the dr says and she asks for me. I will finish this day later–she has to lie flat for 6 hours–no food/drink for 2. Well, so much for the little angel!! She decided she had had enough being still and threw an absolute fit even pulling the I.V. pole out of the bed. Nurses, doctors and other parents came running asking me what was wrong. My only answer was that she was tired and wanted to go home. I asked for and they gave her a sedative and Dr. Mary stayed with me and played her some music on her cell phone (they use them for EVERYTHING) and we thought she had gone to sleep. Dr. Mary leaves and I ask her to tell the nurses not to knock on the door just to come in and I walked back in the room and here we go again. This time she jerked the tubing out of the I.V. bag. Needless to say she won this round. Dr. Mary let her sit up after just 4 hours . The really funny part is I had ordered her a meat lovers pizza from Pizza Hut and was feeding her the meat and cheese when she started pitching her fit. I really think it was the valium they gave her before her treatment. I am going to talk with Dr. Tony tomorrow and find out what they have given her in the past. She has one more lumbar on Monday April 21st and then her last I.V. injection on Friday April 25th. Sure enough during all of this they cut the power at 4:30 and also the water but they only stayed off about 15 minutes. The doctors/nurses/P.T. techs have a choral competition with dress rehearsals tonight. They really sound good but it is so strange to hear them practicing. They had to travel to the psychiatric hospital tonight to sing at 7:00 with the final competition on Monday April 28. Linda told me that it is a hospital owned by the same group that owns this one. They have really worked hard and I hope they win. Well, I guess I am going to go now I need my rest for tomorrow. Hope everyone is well and again please remember us in your prayers. PS I met a young man tonight who is blind due to a brai n tumor when he was 12–he is around 30 now and the “after effects” of the radiation has taken the sight in his right eye please include him in your prayers.
Sabrina and Jordan
April 16th, 2008
Well it is tax day. Hope everyone has at least filed an extension. I overslept again and that is just no fun. Made it through breakfast and learned to cook scrambled eggs on a “hotplate” type thing. Jordan loved them and was ready for a break from bacon. They were alright but not like home. She did her therapies and they brought the air cleaner in and finally around 11 I got a shower. I will not oversleep again. I think I have said that before. Jordan had said she did not want anything ordered in for lunch and then decided she wanted KFC. I promise she will have a beak and feathers when we get home. She and I headed out the hospital and found that it was very cool and drizzly so we rode in one of the “scooter cars”. I don’t know what they are called but it is a scooter with a buggy type thing attached. Jordan and I sat on the seat behind the driver and I held her stroller to the KFC and back. I asked the driver what I owed her when we got back and she didn’t understand me and I didn’t understand her so I gave her 20 rmb’s–about $3 in American money. It must have been enough and I asked Luca and he said I could have given 10 but it was worth alot more than that to me. She absolutely amazes me with the accupuncture–just takes all the needles and never really fusses. Today Andy put one under her chin and made her bleed-she never bleeds-and he told Luca real quick to tell me that he had to do that on this one. After she started bleeding her pulled it out and then we waited the 30 minutes for the rest to come out. Then she did standing therapy and has me come back to the room because the therapists spoil her rotten and play/color with her the whole time. No one else is in the therapy room at this time so she has undivided attention. Tonight she had a temper tantrum wanting to come home and I told her it was getting closer everyday. A couple arrived from Italy yesterday–do not speak a word of english–but she is the neatest thing. She just grabs you and gives you a great big hug telling you “Ciao”–kisses Jordan all over both cheeks and Jordan is not sure about all of this but laughs right along with her. This woman’s husband is back for another round of stem cells. He has ALS and thinks his first round helped a good bit. One thing we take for granted is being able to substitute on the menus at restaurants. Well, today I wanted ckn nuggets for Jordan with french fries for me. I could not do this with a kids meal. If I got nuggets I had to have mashed potatoes and they taste awful. To get fries I had to get a thigh. The manager spoke english but told me they do not change the menu. Period… I cannot tell you how spoiled we are and always seem to think it is our way or the highway—myself very much included. This trip I hope has taught me some patience and I hope I do not forget what I have learned about other cultures when I get home. I have to start planning what to give the nurses, drs, p.t. techs, and translators when I leave. I thought I would do something a little different and asked Luca about ordering them cakes from the bakery along with flowers. He thought that was a good idea. They always get flowers but usually fruit baskets with them. Any other suggestions would be appreciated. I had asked him about ordering them lunch but they all go at different times and he was afraid I would miss someone and they would be offended so I have to be very careful that everyone can be included. Jordan is ready for bed so I will go–she has a lumbar puncture at 2:00 tomorrow afternoon. You all will be asleep but please say a prayer for her before you turn in. Love to all,
Sabrina and Jordan
April 15th, 2008
Well we have made it through another Monday! Jordan threw me a curve this a.m. when she went to the bathroom. I started her shower and left the room when I got back she was in the shower with her shirt (button up front) on! Luckily it wasn’t soaked and laundry ladies came today anyway. I have to admit it is very nice to have your laundry picked up and dropped off every other day. This week is pretty much the same as last so she had electrical wave this a.m. with therapy following. Then we went to the RTMart and got bread and honey (something a little different) and got her a piece of KFC for lunch. We got back and it was time for accupuncture and she did extremely well today. Luca came in with Andy to help me keep her distracted and she let Andy place 10 needles in her head without the first bit of fussing! They stay in for 30 minutes and she played the whole time like it was nothing. Then she went for standing therapy and the technicians asked me if she could go home with them. They are so good to the patients and to the parents. Daisy’s daddy and his girlfriend made supper tonight (spaghetti) and it was so good. They brought enough so I can have some for lunch tomorrow. I need to clarify that the people leaving were patients and their families. The doctors and nurses are not changing. They have patients staggered so that some are always leaving with new ones coming in right behind to replace them. Some good news for us: Jordan has her 3rd lumbar this Wednesday her next one is scheduled for Monday the 21st and her last injection which is by I.V. is on Friday the 25th. If all goes well and we can change our flights we can leave here as early as April 26! Well, she has just gotten in bed and told me to turn out the lights and get in bed too. Bossy little thing. I will write again tomorrow night. Please remember us in your prayers and add a little one that we can come home early! Thanks to all for everything,
Sabrina and Jordan
April 14th, 2008
Well today Jordan and I went to McDonalds for breakfast with LeeAnn and her daughter Grace. Jordan’s appetite was back in full force. She had two “big breakfasts” and then was ready to go. We walked through the neighborhood there and looked in the shops and things and then headed toward west lake. It was a pretty day and lots and lots of people were out. Jordan and I stuck to chicken for lunch but our friends had eel, shrimp and noodles. When we got back to hospital we finished off our second pineapple and Jordan did some laps around the nurses station. Four or five patients have left this weekend and we will be getting a new crew in this week. It is wonderful to see these people leave able to do things they could not when they arrived and to see the hope that time will bring further progress. According to Dr. Mike it takes about 75 days to really start seeing the full benefit of the 6 injections. You then have a window where you will still see improvement and this varies according to each person. We are down to less than 3 weeks to go and I am going to see if we can move our flight up and arrive home around the 30th of April. I can do this without having to upset the schedule for Jordans treatments and honestly I have had/seen/eaten/done/ enough and am ready to be back home. I hope everyone has a wonderful weekend and we will write again tomorrow. Please remember us in your prayers. Lots of love,
Sabrina and Jordan
April 13th, 2008
We slept in this a.m. and did not get up until 7:30. Jordan did not eat breakfast (even though she had me cook it) and had electrical wave therapy that she missed yesterday. After that Pauline, Ron, Elaine(Canadians who arrived this week), Jordan and I loaded up and went to Wushan Square. This is where the traditional market is and we soon discovered you do not want to go on Saturdays! They were bringing them in by the bus loads. Jordan and I went to McDonalds where she had some chicken for lunch/brkfst and of course I got her a happy meal which had Hello Kitty toys in it. Then it was time for a bathroom trip–what a trip it was. On the second floor; a line for the women’s; and I was next to go in and the woman standing in there motioned for me to come in and use the other stall. There was a toilet in that one and the other was the hole in the floor. I will never ever get use to that. Then back to the hospital. When we got here we rested a bit and then Jordan ate her supper and we went and walked around the nurses station four times to tire her out. I do think she is walking better. At times she does not drag her right foot at all. We are going to McDonald’s tomorror a.m. for breakfast with LeeAnn and her daughter Grace (UK) and hopefully get some real scrambled eggs. I was not aware that there were places in this world that could not make scrambled eggs. Live and learn. Oh, of all the movies that i bought the only one that is not in English is “Looney Tunes” and it is a hoot to watch in Chinese. I will be donating this to the hospital when I leave. I did not tell you that Jordan’s treatment yesterday went well and the doctor came in this a.m. and thumped her on her back. He would thump and say “pain?” I knew he was going to cause her pain with the thumping. Again, as soon as the i.v. needle was out she was fine. We are halfway through her treatments 3 down 3 to go. We are heading to bed so I hope everyone has a good safe weekend. Please remember us in your prayers. Love to all,
Sabrina and Jordan
April 12th, 2008
Well, one more treatment and one more week down. She did not have electrical wave therapy today only physical therapy and standing treatment. Jordan sent me away for both of these and I think she worked fairly well for Tina. I talked with the doctors during her P.T. and told them her appetite wasn’t as good as it usually is. I know she is a little homesick but I also think they are working her harder than she is use to. The doctors did not seem concerned. She was going in for her treatment and Luca told her he had a small surprise for her when she came out. About 1 1/2 hours after her procedure we are in her room and in comes Dr Tony, Dr Jack, Dr Hung and Luca, Johnny, Nurses: Nancy, Mary, Kitty singing “happy birthday” and bringing her a two pound box of Dove chocolates plus a t-shirt which she got to unwrap! It was so sweet! I had them sign the back of the t-shirt: they wrote their names in Chinese and in English. I am going to let her wear it off the plane in Huntsville and then put it in her scrapbook. They are extremely thoughtful and caring for their patients and this is just one example. She has not done quite as well with this lumbar puncture as she did with last Friday’s because she has had a slight headache but they have given her a pain killer and I hope she is able to sleep through the night with no problem. She did not eat much breakfast and no lunch so she was hungry a little while ago and I fed her a small amount–this might be part of the headache. She has been very good tonight about keeping her head down for the six hours-we only have 1 1/2 hours to go. Thanks to all who have written–it makes it all the more personal and we are so very honored to have so many wonderful friends and family. Hope everyone has a good weekend-I will write both nights if nothing happens-please keep us in your prayers and thoughts-thank God for His blessings. Lots of love to all
Sabrina and Jordan
April 11th, 2008
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