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.
October 2007 Archives
It's 10:25 a.m. here in China ... Shawna got stem cell injection No. 2. Once again, it took only a few minutes for the procedure and she is now laying in bed again. She must remain in bed, flat on her back, for 6 hours. Dr. Xi is very optimistic; she feels that Shawna is improving and at least her eyes will be back in line with each other soon. She seems pleased with Shawna's progress so far.
Since there is little to do on stem cell treatment days, Gary and Gary II have gone on their golf excursion. It looks like a good day for it today. They should be back close to the time I'm allowed to start moving Shawna around again, so that's good ... they needed the break from the hospital setting.
Shawna is doing very well ... bruised from head to toe, but improving. Her coumadin has been cut back to 1 gram a day, so maybe she won't get so many bruises from now on. Three things are for certain ... one is that her body temperature is now holding steady at normal; two is that the tone in her body is far less than it has been previously; and three is that she inhales pudding in a flash! [laughing] There is one other thing that I have noticed, but will not report on just yet inasmuch as I want to be absolutely sure. Besides, it's fun keeping you all wondering and guessing what it could possibly be.
We are just about at the halfway point and the prospect of the homeward bound countdown is too exciting! Though we have settled in quite nicely now and the people are great, there's still no place like home.
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
Lorraine shares photos from China from her visits with friend Christina Smith, who she met through Ed and Toni Smith. From left, Christina Smith (Gao Yan), Lorraine Weil, Shawna Weil, Gary Weil and Smith's friend, William.
From left, Gary Weil II, Christina Smith (Gao Yan), Lorraine Weil, Shawna Weil.
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.
Shawna had her first stem cell injection this morning at approximately 9:30 AM (Tuesday, Oct. 16th). It took longer to get her loaded on the stretcher and down the hall to the Operating Department than it did for the procedure itself. It took only about 20 minutes and Shawna was being wheeled back up the hallway and into her bed again. We had to keep her laying on her back perfectly flat for 6 hours, but she came through it all like a champ!
The only side effect we were told to watch for was a fever; Shawna was actually lower than normal today ... go figure! That is one change we have noticed prior to the stem cell treatment today ... her temperature has been lower than what we have been used to at home. Her normal is usually around 99 to 99.3 F; since we have been here, she has been 36.7 to 37.3 C. Anyway, now we just have to wait and see what changes occur. Her next stem cell injection will be in 2 weeks.
It is so exciting to know that we are now on a countdown towards returning home. Don't get me wrong, the people here are great ... you won't find a more caring, helpful environment, but there's no place like home. To that end, we are one down and three to go ... woohoo!
Here is some video of the Weil family in Shawna's hospital room - shared by Ed Smith.
Ed and Toni Smith put the Weils in contact with a friend in China -- Christina -- who has been visiting. Here are a few photos she took.
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.
OK, I fixed my accent [laughing]. Being over-tired and typing messages here do not mix well. We are finally settling into a routine. Working without all of our conveniences from home is exhausting, but we will manage. We were able to find the converters and adapters we need for the electric and I'm sad to say that it would seem we have fried the nebulizer machine and the Kangaroo pump's base unit ... the portable unit of the Kangaroo pump will still work if we could charge it, but we can't because the base is gone.
Shawna's IV infiltrated yesterday causing her left hand to swell up the size of a softball or bigger. Her poor hands are so bruised up from being stuck constantly; price we have to pay though. No pain, no gain, right?
Can't wait for the first stem cell injection on Tuesday, Oct. 16th. Gary already thinks he sees some slight changes in her just from the stem cell proliferation meds. I must say she does seem more alert ... something in her eyes.
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
I have a few things to report today ... first, Tony, the physical therapist here, says that Shawna is like a newborn baby and he feels some of the therapy techniques we've been using in he U.S. are not quite appropriate. One of them being having Shawna kneel over the ball ... he feels that it is contradictory to what we need to accomplish with Shawna's head control. Head control, as in infancy, should precede all other movement. Interesting point.
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 given the stem proliferation IVs since we arrived. The IV medicine is preparing her body to accept the stem cell injections that will come. Therapy ... PT and OT ... was ordered and I am watching PT range Shawna as I am typing this blog. OT will be here later today at 2:00 PM. The doctors, nurses, therapists and just all of the hospital staff are all the most cooperative, pleasant people you would ever want to meet.
It has been crazy, but it can only get better, right? It is so difficult to be so far away from home and with a language barrier prohibiting us from getting what we need to make things so much better.
We were supposed to go out tonight with a group ... sort of to get acquainted and find out where some places are ... but Shawna took ill last night, so we decided we best stay in.
Just a quick note ... power adapters are not working and the battery on this laptop is very low. I will be able to better fill you in later when we finally obtain the proper power adapters for our equipment. Anyway, we already blew up Shawna's nebulizer machine trying to work out the adapter situation. Gary will go with Isabella later today to try to find the appropriate adapters, so cross your fingers!
Shawna got very sick (projectile vomiting) last night; could be because her tube feed was dripping too fast because we cannot plug her machine in! Or else it is because of the new medicines that the doctors here are introducing her to. Hard to tell which at this point.
The language barrier is difficult; so far, we have not found anyone who is truly fluent in English.
Have to run now; doctors just came in. Will report more later!
We are now trying to adjust to day being night and vice versa ... that's not going so well yet. Shawna doesn't care if it is daytime here; to her, it's night and she sleeps right through whatever we do with her.
The power adapter that we bought from AAA is a joke; we can't plug anything in to it. It plugs into the wall, but where we are supposed to plug in the equipment is only 2 prong and all of our equipment is 3 prong ... go figure! Anyway, we already fried the Nebulizer machine trying to see if multiple adaptations were going to work. The hospital is ready to kick us out for blowing circuit breakers constantly. Tomorrow, Isabella is going to take us to the Circuit City-type store to see if we can get the proper adapters.
Pray that we find one because Shawna's tube feed depends on it.
What a long flight!
We finally arrived at Beijing; things not going so well yet. I'll have to report tomorrow because a guard is here pointing at his watch right now. lol. I'm in the computer room at the hospital and he wants to lock the door.
Jason Plotkin - Daily Record/Sunday News
Lorraine uses a harness to help carry Shawna to the mat for therapy. Shawna's parents are hoping the stem-cell treatment will help loosen Shawna's taut muscles. (click to enlarge photo)
If you're just starting to read this blog following the York Sunday News article of Oct. 7, here are some places you can learn more about Shawna's story:
In Nicki Lefever's Sept. 28 article, "Will stem cells help?", the Weils and their medical team talk about the potential for Shawna as she goes through the treatment - that she might once again be able to communicate and eat some foods on her own - versus the costs and risks of traveling to China to do so.
To accompany that story, photographer/videographer Jason Plotkin created this video footage of Shawna as her family, friends and nurses talk about her condition.
And at Shawna's MySpace page, you can read the many comments her friends have left her since her accident and learn more about Shawna's heroes and interests.
All of this preparation is exhausting! I was up last night until 12:05 AM working on our company books; making sure everything is taken care of before I walk away for two months. It is 10:44 PM now and I just finished up on everyone's checking accounts; all is good for me to go now.
Tomorrow will consist of packing Shawna's clothing; cannot pack up her machines until Wednesday morning since I think she will want to eat Tuesday night as usual. I still don't know how we will work her around to night being day and vice versa. Do we over-feed her? Or let her go hungry for a day? She's too skinny already, so I say let's over-feed her [laughing].
Can't wait!
