Posts filed under 'Uncategorized'
3-3-09
Well, I guess I spoke too soon. Joey woke up at 5:25 hurting pretty bad from the waist down. This was different, it wasn’t his tailbone. It was the muscles. He went through some pretty intense pain until about 9:30 p.m. He compared this time to the last time except the pain was an hour late and it was only in his legs. He held tough and decided to forego the pain meds. It is 11:05 p.m. right now and he is sitting in his chair. He ate a good dinner and has been drinking alot of water. We hope that he will be able to make it to PT and OT tomorrow. THREE DOWN, ONE TO GO!!!!!!! Way to go Joey!!!!!! Keep the good thoughts and prayers coming, I know this will be a miraculous thing when he gets all of his strength back.
Joey says, “Horns High to all!!!!!!”
March 3rd, 2009
3-3-09
Most of the morning was like any other except I had to go to WalMart and to the bank. Diana came to our room about 10:00a.m. so she could go with me. The first and only time I had ever used the ATM machine here in China was about a week ago and it turns out that the machine gave me a counterfeit bill. It was 100 yuan (equivelant to $14.00 USD). I found this out when I tried to pay for our dinner one night and was told that it was fake money. Anyway, Diana was going to try to explain to the bank what happened and maybe they would reimburse my money. I guess my receipt wasn’t enough proof so, needless to say, I have a 100 yuan souvenir, hahahaha. We went to walmart to get a few things then headed back to the hospital. Joey had some visitors while I was gone. The neighbor down the hall (also asian) came in to talk to Joey about any progress that he may be making, the laundry lady picked up our laundry, doctor Amy, and a few nurses.
His SCT was scheduled for 2:00p.m. as usual, and they came to take him about 2:05. At 2:25 he came back and said that this one didn’t hurt at all. I started watching the clock, expecting some intense pain by 4:30. It is now 5:10 p.m. and Joey is sleeping. We stayed up until about 2:00a.m. this morning hoping again to avoid some pain. I’m sure Joey wouldn’t be sleeping if the pain was very bad. THANK YOU JESUS!!!! We’ll see how long he sleeps. If all goes well, he will be able to go to PT & OT tomorrow. I will keep you all posted.
Thank you everyone for all the great comments. Joey asks me everyday to read them to him. We look forward to them very much.
JUST A TIP: American DVD’s do not work in China, that is a bummer since my sister sent us some good movies to watch. Thank you anyway Darla.
March 3rd, 2009
3-2-09
Joey and I had an interesting day.
We got up and got him ready for PT. Everything was going great. Mark commented that Joey was sitting up by himself much better and he stood on the standing table for a long time as well. We then came back to our room to have a late breakfast, order lunch, sort laundry, etc…. At 1:00 P.M. I wheeled him to OT with Cindy. I asked her if the doctor had mentioned Joey’s tail bone problem to her and she said “no”, so I told her why Joey had been in so much pain last week and asked her to please go easy on the back exercises. Well, there must have been a miscommunication because I was called back to OT before 2:00 p.m. He was in pain again. Cindy had him doing too much too fast I guess. He wanted to lay down so he decided to skip his massage. When we got to the room, the doctor came in and I explained what happened. She called Cindy and asked her to modify Joey’s back exercises because of the malformation to his tailbone. I do believe everyone is finally on the same page now, thank goodness. At 3:00 p.m. another coordinator came in to our room and said that there were visitors in the waiting area. It was a couple from Hong Kong with a 26 year old son who also has FA. They have been thinking about bringing their son here for the stem cells treatments. The coordinator told this couple that there was a patient in the hospital right now who has FA and is having these treatments. The man & woman asked if they could visit with me and Joey. Of course, we said bring them in, we would be happy to talk with them. They came in and the man introduced himself and his wife. He spoke very good english so I was very excited to speak with him. He asked many questions about the hospital, if we were happy with the environment, if the staff was friendly, if we were happy with the results that we were getting, etc….. so, after answering all their questions, he laughed and said that they would be here in 2 weeks. Joey and I are very excited that we will have them as neighbors soon. I had to laugh when the man said, “ money talks and bullshit walks”, he was soeaking about how expensive the treatments are, hahahahaha. Maybe we will all be able to take a trip together before Joey and I go back home, that would be great.
Joey has his 3rd SCT tomorrow. I am sure we will be staying up late tonight with the hope that he will be able to sleep through some of the pain after the treatment.
My sister sent Joey and I a care package from home. She included movies, beef jerky, pringles, People magazine and so much more……. Darla, we thank you so much for all the goodies. It was like Chistmas in Beijing for us. We had smiles from ear to ear and it totally took the edge off of being so far from home. Thank you little sister, we love you.
more later……
March 2nd, 2009
2-28-09
Joey and I postponed our trip to the Beijing Zoo and to the Forbidden City today but we really needed to get out of this room for a couple of hours so we went back to the Temple of Heaven again. I want Joey to get a little stronger before we stay out all day long. The Temple of Heaven was better this time since we knew where to go. We bought some more souvenirs and headed back to our room.
Joey will have his 3rd SCT on Tuesday, March 3rd and hopefully by next Saturday, he will be strong enough to go to the Zoo & the Forbidden City.
Mary Kay, thank you for the awesome comment, it made Joey’s day.
more later…
February 28th, 2009
2-27-09
HALLELUJAH!!!!!!! The doctors did an x-ray to try and figure out why Joey was having so much pain in his hips & tailbone. The x-ray showed that he has a malformation that causes him pain if he lays on his back for too long. After each SCT they have him lay flat on his back for 6 hours…..Thank goodness it isn’t caused by the stem cells. I am soooo relieved!!!! Now they will allow him to lay on his side after each SCT and treat him for the bone problem. Accupuncture would not help his situation so he won’t be getting that done.
We may have to postpone our little outing this weekend until Joey is feeling better but at least everyone is aware of the problem now and he can concentrate on getting stronger. I know we both feel much better knowing the problem is not with the stem cells.
dana
February 27th, 2009
2-27-09
This morning about 5:30 a.m. Joey started having alot of pain in his hips and tailbone. It kept getting worse. He had to wait for the doctors to come in at 9:00. They all piled in our room to examine Joey and ask questions about the pain he was feeling. They have decided to do an x-ray to see if there is any malformation from sitting in his wheelchair for so long. According the the doctors, he should not be going through any pain right now. Accupuncture may be an option again. No PT or OT today.
more later…
February 27th, 2009
2-26-09
Hello everyone. The day after Joey’s 2nd SCT, he wasn’t feeling good at all. He was running a low fever but the doctors said that it was a good thing. He slept most of yesterday and didn’t have PT or OT. The massage therapist came to our room to massage Joey so he didn’t have to get in his chair. He ate pretty good and drank alot of water. This morning he got up and went to PT with Mark. He is still very sore so Mark didn’t put him on the standing table today. He did say that Joey did very well and was more flexible. We came back to our room and Joey is now taking a nap while having his IV. It is almost lunch time so I will go down to the cafe and get us some lunch.
At 1:00 Joey will have OT, then at 2:00 he will have his massage.
More later.
February 26th, 2009
2-24-09
Last night Joey didn’t go to bed until about 3:00 a.m. He was very emotional and nervous about the second stem cell treatment and not at all looking forward to all of the pain he had experienced before. He wanted to stay up as late as possible so that maybe he could sleep through some of the pain if any. He is not required to attend PT, OT or TCM (traditional chinese massage) on the day of the stem cell treatments so he go up around 9:30 a.m. We had a horrible hamburger for lunch but the french fries were ok. Joey started drinking alot of water (suggested by the doctors to help minimize the pain) and then at 2:05 p.m. they came and took him to the operating room. He was back in about 15 minutes (2:25 p.m.) and said that this time the injection hurt. During the first stem cell treatment, it took 2 hours after the treatment for him to start feeling pain, so I began watching the clock…..
It was 4:30 and he started feeling pain in his thighs and knees. It continued to get worse. All of his doctors came in to check on him and told us the same thing as the first time…..”If you can bear the pain, it is best to do so. If you absolutely cannot stand the pain, we will give you pain medication but if you choose to take pain medication, it will surprise the stem cells and may not be as effective”. Well, Joey has decided not to take the pain medication and I am very proud of him. He has been very brave throught this whole ordeal. It is 7:30 p.m. and he is sleeping right now. I will try to get him to eat when he wakes up.
Our new coordinator/translator, Diana is very sweet. She came by to visit with us this afternoon before the SCT (stem cell treatment). I think Joey and I are really going to enjoy her company. She will go with me tomorrow to WalMart and to the bank.
If Joey is feeling better by the weekend, we have plans to go to the Beijing Zoo and to the Forbidden City. Diana has arranged for a van driver to take us anywhere we want to go for the whole day. I will take lots of pictures.
Next SCT is scheduled for next Tuesday, March 3rd. More later.
Dana
February 24th, 2009
2-23-09
This morning was the same as any other….Joey got ready and I took him to PT with Mark. We came back to our room and had a light lunch. At 1:00, Joey had his massage. Right now he is doing OT with Cindy. Greta came in this morning to tell us goodbye. She brought me a beautiful scarf. We talked for a while and then she hugged us and left. We will definitely miss her very much. She said that she will try to make it back before Joey & I go home. We hope she does because we would love to see her again.
Tomorrow is Joey’s 2nd stem cell treatment and we are hopeful that his body will handle it better than the first. I will keep everyone posted.
If Joey is doing good by the weekend, we are planning to go see the Forbidden City and the Beijing Zoo. Most taxi drivers do not like picking up people in wheelchairs so we are paying the driver of the van, that picked us up from the airport, to take us. It will be easier on Joey anyway. We are very excited to have something to do. I will take more pictures and e-mail them to everyone.
Say another little prayer for Joey tomorrow.
Dana
February 23rd, 2009
2-22-09
It is Sunday night and Joey & I had an uneventful but relaxing weekend. We tried getting out of our room Saturday afternoon but the only thing within walking distance is the Temple of Heaven and we’ve already done that. The weather is still very cold. Most of the snow has melted but there are still signs of it in the shade. We bought some oranges from a street vendor and that was about the extent of it.
Tomorrow we will begin a new week with positive enthusiasm. Joey’s next stem cell treatment is on Tuesday. I will keep you all posted.
Thank you for the new comments, we enjoy them very much.
dana
February 22nd, 2009
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