Shawna has finally gained back all the weight she lost due to being sick after the last stem cell treatment in China. Her eyes continue to be more in alignment than they had been in the past. One new development is that she is definitely moving her own legs during pivot transfers! Two weeks now she's been doing it ... woohoo ... go Shawna.
We've all been very busy with the holidays and trying to get caught up from being in China for two months.
Now that things are settling down a bit, I wanted to say once again ... Thank You to everyone who helps us to support Shawna. Without each and every one of you, we would have never been able to take Shawna to China. We are so blessed to have and are truly grateful to all of you!
Shawna has not changed much yet, but the stem cells are in her body developing into whatever they will become. Needless to say, that all takes time ... and time is what we have plenty of! That (time) and Faith will see us through, so keep up the prayers.
We are all packed and waiting to leave the hospital. It is 2:40 p.m. here and we will leave at 3:30 PM for the airport.
I'm still amazed that we will depart Beijing at 7:00 p.m., Wednesday, December 5th, and will land at Dulles International Airport at 7:21 p.m., Wednesday, December 5th ... talk about time seeming to stand still ... LOL. We will be in the air for 13 and a half hours, but it looks like only a 21-minute flight ... amazing.
I am signing off now so that I can get this computer packed up. Can't wait to see everyone at the airport and at home. It's been too long.
Well, we only have a couple of days to go now and we can hardly wait! Now that it is about over, it really did fly by fast. It doesn't seem like we've actually been here for 60 days already.
Shawna is doing fine. She did have a bit of a bad time with the last stem cell injection, but is doing much better now. It took about 5 days for her to come back around to her old self.
The internet is down more than it is up here. We've been having a heck of a time being able to log on. I do apologize for the lack of updates, but it has been out of my hands.
We are now very busy running around trying to get everything in order before our departure on Wednesday, Dec. 5th. Four medicines were introduced here, two of which are not available in the U.S. Therefore, we must arrange to purchase them here and bring them back home with us. So much to do and so little time to do it all in now!
It's Saturday afternoon here and Shawna is finally feeling like herself again (crossing fingers my words don't jinx her).
The nurses' dinner was canceled last night, but we did manage to take Tony (PT) and Faby (OT) out for dinner. There will be no time left to take all of the nurses, so we are really disappointed that we didn't get the chance to thank them on a personal level.
Ty, Renee and Mark will leave us on Monday; Blake and Jeremy on Tuesday; and we leave on Wednesday. Once we all clear out, there will be only a couple of Americans left here (Jack/Doreen and Glenn), but they leave the following week ... 12th and 13th. Our prayers will still be here with them.
The Internet has been down for the last day and a half ... seems to go down quite a bit. If the Internet isn't down, my computer is and I have to wipe it clean and start over. It's been a real workout just trying to stay in touch while we were here, but it's almost over now; can't wait!
Well, it's been a while, I know. My computer keeps going down so I'm not able to successfully log on as much as I'd like. Oh well, we only have a week to go.
Shawna received her 4th and last stem cell injection today. All went well until about 3:30 PM ... she started running a fever of 101 F and became ill. I guess we are lucky it didn't happen with the previous injections. The fever and vomiting is a common side-effect from the stem cell injection ... poor Shawna.
Gary and Gary II were able to get out again today and go golfing. They had a good time golfing on frozen ponds ... lol.
My computer is acting up again, so I'm going to run for now before it cuts out before I get this e-mail done.
It's just a lazy day here today. We are sitting and watching movies with Shawna, so I figured I would let you all know that we are still here, but have only a little over a week to go. Shawna is not very happy today; very tense. I think she's getting anxious to go home since we have been telling her about it daily.
Well the guys are waiting on me for the next movie to start, so have to run for now.
We just wanted to wish everyone a Happy Thanksgiving! It is Thanksgiving Day here already and all of you are still sleeping ... weird. I'm organizing a Thanksgiving dinner trip for anyone who wants to go from the hospital. We will be going to the Outback Restaurant for our Thanksgiving dinner ... none of us trust how a turkey might be prepared here. We figure steak is our best bet ... lol.
This Thanksgiving I want to give thanks for everyone who has touched our lives in our quest to bring Shawna to China ... we couldn't have done it without each and every one of you! I/we are thankful to live in such a caring community, great friends, and the greatest family anyone could ask for!
As you all sit down to your turkey dinners today, please include Shawna in your prayers and remember how jealous we are of you today ... we get no turkey ... lol. And Gary, with a whimper, says "no pies" ... he does so love all the baking I usually do ... oh well.
Thank you all again for caring so deeply for Shawna and being a part of our lives!
We only have a little over 2 weeks left. We are on the countdown for sure now!
We went out to dinner tonight to say goodbye to Dan and LaNae from Utah ... they will leave us tomorrow morning. Nurse Linda stayed with Shawna tonight so that little Gary could go out to dinner too.
Though little Gary didn't take pictures of them at the Great Wall of China, Dan and LaNae are who he went with to see it.
Saying goodbye to another family is hard, especially since we have been here together this entire time. It also brings about the realization that we only have 16 days left here ourselves.
Shawna is doing great! She seems to be very relaxed lately. Gary (Dad) has noticed that she has been crossing her body with her arms ... this is new. Not a big deal, but every little thing counts!
It's Tuesday, Nov. 6, and Shawna is taking the day off. She woke up with a fever this morning (100.4) and Dr. Xi said she cannot go to therapy because of it. We won't let Shawna know; she'll try to duplicate it every day [laughing]. She loves her days off!
Gary II had a good time at The Great Wall of China on Saturday. Gary (Dad) had a good time running around Beijing with Robert Lee on Sunday ... they went sightseeing at the Yong He Gong (Buddhist Temple).
Gary found an Outback Steak House, which we went to late Saturday night and thoroughly enjoyed. Little Gary stayed with Shawna while we went ... we did get a meal to go and brought it back to him.
It's Saturday morning here and little Gary has gone to the Great Wall with a group of other families from the hospital. I had him take the camera, so hopefully he'll get some good shots for us.
Gary (Dad) is on a quest to find real American food [laughing] so he has gone out for a bit to see what he can find.
Shawna and I are watching a movie; taking it easy.
O.K. ... there is no "secret" ... I was quite clear in my blog that I didn't want to report on one thing I've noticed until I was sure. Well, it would seem that Shawna is definitely saying "more" while I'm feeding her pudding. I told her to let me know when she was ready for another bite and she did. As soon as she swallowed what was in her mouth, she said "more" and then opened her mouth wide so I could give her the next bite. She has been doing it pretty consistently. Accordingly, she now has a two word vocabulary ... "Mom" and "more".
God Bless,
Lorraine
This blog I wanted to direct to everyone else reading who may be following Shawna's progress and are maybe considering their own journey to China.
Though the coordinators are absolutely wonderful and the www.stemcellschina.com site is very informative in helping you make your decision, the following is what I feel anyone considering this trip needs to know:
1. Power converters from 220V to 110V are necessary, but you also need to make sure and purchase any suitable adapters as well; i.e., in our instance, our converter could only accommodate 2-prong plugs and all of our equipment had 3 prongs. We had to buy adapters to go from 2-prong to 3-prong.
2. If your loved one is tube fed, take enough cans of food to tide you over for at least a week. You will need your equipment as well ... they do not have the machines (pumps) here. The hospital staff will be able to order powdered equivalent food for you, but you need to bring your bags to put it in. We ended up purchasing a blender here to mix it thoroughly.
3. You need to pack enough incontinence products (briefs and pads), as the hospital does not supply these either. Once you are settled in, your coordinator will order them for you and have them delivered to the hospital, but you must purchase them.
4. Bring a couple of rolls of toilet paper so you don't have to run out shopping immediately. The hospital provides you with one roll, but their rolls are much smaller than the ones we are used to in the U.S. So just come prepared.
5. Pack some salt/pepper, sugar or Sweet 'N Low packets ... finding these items on the store shelves can be challenging. There is a store here that caters to Westerners, but the prices are absolutely ridiculous due to the items being imported. Accordingly, if there's something you just can't live without, bring it with you!
That's about all I have to suggest for now.
Let's see ... Gary and Gary did not get to go golfing on Saturday because mother nature was not kind to them and dumped a bunch of rain on their dreams.
Shawna has been sneezing today, so I'm saying some extra prayers that it's just environmental ... she does have my allergies and I'm a little stuffy today myself. It does not feel like a cold to me either, so here's hoping.
Dr. Xi just came in and informed me that stem cell injection #2 has been postponed until Wednesday because they cannot get the stem cells until then. Just a minor delay; we'll have to deal with it.
I feel so bad for another family here ... they arrived from California and poor Jack has taken ill with pneumonia and cannot even begin treatments until he is all better.
Have to run for now. Will update again Wednesday after Shawna gets her stem cell injection.
It's hard to believe that we've been here for 23 days now. Where does the time go? It's really flying by now. Probably when we approach Dec. 5th, it will slow down and start dragging along again. For now, I'm loving how fast it is going. The only problem is that I have to write in a journal here everyday just so I know what day and date it is.
Shawna is doing quite well. She's gaining some control over her head. Today she was following Faby's (OT) commands to "pick your head up" and "lower your head forward". After PT and OT, we have a slight break before TCM, so I get a chance to feed Shawna some pudding. Let me tell you, she's been wolfing it down! Today she finished the whole thing in 12 minutes! That's a record time for her.
Though we have settled into a routine here and time seems to be flying, we sure do miss home! It's hard to have half of the family here and the other half still back in PA. We miss you Marci and Angel!
Today we had another party ... seems to be the thing around here ... lol. We all gathered at the Cafe to say goodbye to Norman and Marlene. They will be leaving us on Wednesday to return home to Florida ... go Norm!
Well, Gary's snoring already and it's making me tired so I'm going to relax now and watch Shawna's tube feed drip [laughing].
God Bless,
Lorraine
We are quickly approaching stem cell treatment #2, which will take place on Tuesday, October 30th. So far, we are noticing some slight changes but do not want to comment at this point in time ... until we are certain they are related to the treatments. Shawna's tone seems to have been lessened. However, today, she was extremely tense again.
We are just going along with the flow here now and waiting in anticipation of the results from the stem cell treatments. We know that the results most likely will subtle and probably will not be realized until we have returned back home, but the prospect is just so exciting. We have something to look forward to! After watching Shawna for almost 4 years make only slight progress with each passing year, it has been very discouraging. Now, to know that the stem cells are in her body helping to speed up her own body's healing, we have a renewed hope for her and our future!
I will be sure to post any definite changes as soon as I am sure; I wouldn't want any readers to be given any false hopes for this procedure. Traveling to China is, for us, the best move we could make for Shawna; we had no other hope.
We finally went out for dinner the night before last. We went to a French restaurant in Beijing called Brasserie Flo. Little Gary was going to stay and take care of Shawna while Gary and I went out to the restaurant with a group of people, but he ended up being able to go with us too. Christina and her cousin's girlfriend, Yen, showed up to see Shawna Saturday evening and Christina very graciously offered to stay and take care of Shawna so that we could all go out together. Christina is the kindest, most caring person anyone could ever want to meet. We just love her! Anyway, we were definitely in heaven at the restaurant ... real food!
We are still here in Beijing. Sorry it's been a while since I updated but we have been encountering no connection problems with the Internet here at the hospital. Other patients are telling us it is because the routers are located at the nurses' stations and they end up blocking the signal with charts, papers, etc. on their desks. I'll have to investigate it next time I have no signal for a while.
We are really getting into the flow of things around here. It's very exhausting, but we will endure. We rise at 6 AM, change Shawna, fold up our beds (1 sleep sofa and 2 cots) and get them out of the way. At 7 AM the nurses are coming in and doing vitals. At 8 AM the doctors come in for their rounds. In the interim, there is the cleaning staff who come in and empty the trash cans and mop the floors.
After they all clear out, we are able to quickly shower (there is no hot water anywhere in the hospital from about 8 PM until 8 AM). We then make sure Shawna is dry and load her up into her wheelchair and off to PT we go so that Shawna is in the physiotherapy room at 10:15 AM. PT is an hour-long session.
Finish reading 'A very busy schedule' »Well, things are finally settling down a bit; we are falling into the routine here. Therapies begin at 10:15 a.m. and we are non-stop until 6 p.m.
I was going to upload some pictures from my camera this evening, but discovered that I forgot to load the software onto this laptop. Without it, I cannot post any pictures, so I have written to Marci and asked her to ship it out in a care package that we have her sending us. Gary was missing some of the necessities in his life ... like cereal and english muffins ... lol. As soon as it arrives, I will send all pictures your way.
Little Gary is out with the gang again this evening, so big Gary and I are about to sit down and watch a movie. Can you believe a DVD here costs $1 and the new releases are $3 ... needless to say, I bought a few.
God Bless
The internet here at the hospital was down all afternoon & evening yesterday (Wednesday). It's now 12:30 PM Thursday, Oct. 11th and it just came back up.
Anyway, Shawna started her therapies in the physio therapy rooms. Tony, her PT here, says that we should not be kneeling Shawna across the ball on the mat because it makes her hyper-extend her head back; we should be doing other therapies with her to help her to regain head control first. Interesting how different cultures feel different approaches to the same problem are best.
We will meet with entire team of doctors, etc. this afternoon at 1:30 PM to go over what the plan is for Shawna. We are getting ready now to go, so I will report more later.
P.S. little Gary and I had to go shopping again yesterday at Wal-Mart to try and find diapers and formula for Shawna. We managed to find something like Ensure, but there were no adult diapers to be found at Wal-Mart. My chin hit the floor when they told me "no" ... Wal-Mart did not have something ??? inconceivable! LOL.
Just a quick note ... it's one thing after another here; what a trip. I tried to pay my bills online earlier just to discover that my online accounts do not like the fact that I am logging in from a different computer and ISP from what they are used to and my access has been denied. I could have obtained a new access code to plug in if I was home, but what is the point of using a laptop computer to log into my accounts while I am away from ... duh ... I am away from home and hence not next to my telephone. It could have also been done through email, but I inadvertently missed that particular account when I changed our email address when we got Verizon DSL a few months back. Oh well.
Now I just tried to switch Gary's airline ticket ... he has decided to stay due to so many complications here ... we both feel it's better if we stick together, as usual, and handle this situation. I'm relieved that he has come to the decision to stay! I'm not sure I would have held up under all the stress [laughing]. We have tackled everything together for 22 years now and why should we change now ... we are a great team! Anyway, I'm not sure I was successful online changing his flight. I have yet to find someone who can help me get an outside line on the telephone so that I can call United to make sure it went through. What fun! I had to email Marci and ask her to handle it ... so much cannot be done while in a foreign country. A lesson to be learned
Last night, Christina, a friend of York City Councilwoman Toni Smith, came to the hospital to meet Shawna and us. She brought Shawna a beautiful vase of flowers!
Well it's been very hectic here to say the least. Trying to adjust to another country is not that easy. There is the major time difference ... 12 hours to be exact, then there is the language barrier ... trying to make people understand your needs when you can't speak to them is definitely not an easy task. We are planning to go to an electronics store again this afternoon and buy a palm pocket translator; that should make things easier in the very near future.
I have to say that this is definitely an experience of a lifetime! The food is quite different from what we would be able to order at a Chinese Restaurant at home, so you just don't know exactly what you will get until it is in front of your face and you are wondering if they goofed [laughing]. Let's just say "thank God for KFC and McDonald's"!
The holiday is over and an entire team of doctors came in yesterday morning to "work her over". All kinds of tests were ordered and they will decide to go from there once they get the results. Shawna has been giv
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