Addendum to earlier post: you will need to go back to the Stem Cells China home page to access current patient blogs as I cannot get mine to refresh to include the new ones. Check out the other ONH sites- Carl,Hunter and Rylee. Ryan is another kiddo here with a nice family. Having brain farts right now and not able to recall the host of others here that are so kind. I’ll post them when I can remember.
7 comments January 26th, 2008
Today the weather is again cold,foggy and snowy. Makes for a sleepy/lazy day inside. Unfortunately Lydia has been vomitting all day since she tried to eat lunch today. So much for the sleeping part. Hopefully this is just a short time virus that will soon disappear. I don’t like seeing her not feel well and I don’t want anything to keep us from leaving on the 5th. I do look forward to the comforts and privacy of home!
Yesterday, we went for a walk past the Chinese WallyWorld and found a nice park. Has a couple of swings and a small statue of a dog Lydia enjoyed feeling. She needed to “go potty”. The only thing around was a small restaurant, they let us use the bathroom (I guess they felt some pity for the 3 Americans underdressed for the cold weather). I am not sure how to describe the bathroom: a hole in the floor would be the easiest. Yes, the toilet was flush with the floor, no TP,no bars, no flushing mechanism. WOW, took me a minute to figure out how it was going to work. Defintely an experience for us, I think Lydia was a little scared. The “Big Adventure” continues!
Be sure to check out some of the other blogs to the right. Several of them are people that are here and we interact with daily. Please keep them in your prayers as well.
7 comments January 26th, 2008
Lydia has done very well after her last spinal. We made it through the 6 hrs of post-op boredom. She had a slight headache for a couple of hours, otherwise no problems. The procedure seems to wear her out overall and sleeps a bit better for a couple of nights. Her 4th and 5th(final) spinal will be on Monday and Friday of next week.
Today and the next few days a camera crew is around to film what goes on here and interview some patients and families. I spoke with a reporter from the same crew last evening on the phone, she is interested in interviewing Lydia. We will see how it goes.
Todays exciting news: we did a test of Lydia’s vision today using a flashlight a varying points in the room. At one point she was to walk to where she saw the light and another time was to stand still and point to the light. We determined earlier that she was able to consistently perceive light at approx 6 feet in front of her(last time I tried it was about 1 foot in front). We asked her to locate the light at these varying points around the room and she was able to do so with almost 100% accuracy. The only time she didn’t go to the flashlight was when she went to a source of light coming from under the closed heavy curtains that was a stronger light than the flashlight. This was the first time I have had her point to a light and she had a little trouble with hand-eye coordination but did exceptionally well for the first time! Truly amazing!!!
20 comments January 25th, 2008
Yesterday, we were extremely bored around here. So, even though it was again cold and rainy, we decided to go out to eat relatively close to the hospital. A restaurant had been recommended by others staying on our floor, so off we went. Well, as a vegetarian the place was absolutely horrible. A fish tank was the centerpiece of a very large room-the tank was the size of a normal sized living room- and was filled with all sorts of fish,seafood, some of the biggest fish I have ever seen. The poor things were all crowded together,just awful and smelled absolutely horrible. I ordered broccoli and rice. Lydia and Doug ordered more traditional fare which seemed to please the staff more so than my order. We were led down long hallways to a very nice private dining room with our own attendant. The table was set with chopsticks, warm towel, lots of small bowls,plates and we were served tea. I felt very much the tourist and learned to eat with chopsticks, Lydia really enjoyed her meal and the tea.
In the afternoon we went to see the opthamologist again since she was tolerating light in her eyes. Unfortunately, when she tried to keep her eyes open with her chin/forehead resting on the test machine(don’t know its name but we have all done it), she was not able to keep her eyes open . I guess that light is brighter and/or closer to the eye. We all had to give her credit for trying. We will likely try again before we leave.
So Lydia had her 3rd stem cell treatment today, her 2nd spinal. She did really well again, very little crying “because I knew what to expect”. Again, all of the staff praised her for being so brave and cooperative. She is currently having a hard time with not being able to get up, asks me every 5 minutes how long it will be “until I can get up”. 45 minutes to go………
15 comments January 23rd, 2008
We have enjoyed a few days of just being human. Some patients who were leaving soon hosted socials on the floor and was a good chance to get to know some of the patients and families. There are people here from all over the world – Australia,Scotland, Romania,US,Italy. We are all here for the same reason – HOPE. In our conversations we all have a common thread and we all very much needed these social events to just be and enjoy the company of other hopeful people.
We also took a trip to WestLake area – a much more urban area than we are in (for those in STL think Central West End/U City loop). Ate at a nice Italian restaurant , and did I eat. It felt really nice to have good food and feel full. Lydia also enjoyed having warm,delicious food. Unfortuanely it was raining but we took a walk around the area anyway. We had a driver/escort with us that helped hold umbrellas, figure out where we were,etc. Unfortunately he spoke no English but we got by with a lot of pointing and the use of a good map.
Big news for the day: Lydia used to be very sensitive to light in her eyes, not able to tolerate the pen light in her eyes (refer to one of the first posts for failure of opthamologist visit). Today, she was able to keep eyes open and not turn away when we were playing with a flashlight, she also said it did not hurt. She normally would have turned away, put a hand over her eyes and said “OUCH!” She is really starting to show some changes. It is pretty amazing that she is responding so quickly! She will have her 2nd spinal on Wednesday afternoon, hopefully she will not have the same reaction as last time. She had absolutely no problems with the IV stem cell treatment on Friday.
Again, our most heartfelt THANK YOUs to everyone who helped us be here and for all the prayers being said for Lydia.
22 comments January 21st, 2008
I have a lot of ground to cover in this post. First of all, Lydia’s fever finally cleared and her back and leg symptoms have dissipated. She had her second stem cell treatment today, it was through IV today so was much easier for her to handle though she still was nervous and scared about the IV. Still brave and not many tears. Kirshner (the program coordinator/titles too numerous to list) arrived today just as Lydia was preparing for her treatment. It was nice to put a face to the voice on th other end of the phone. She was very nice and helped explain the treatment to Lydia which helped her get a handle on what was happening-she is so very inquisitive. She even got to feel the bag of stem cells being infused throught the IV-pretty cool. And I explained to her that they were her “favorite color” yellow. She thought was pretty neat and made it all better.
So the very exciting part of the day came about 3 hours after her treatment today. We were bored and walking around the ward (no mobility or eating restrictions today:) )when we walked over to the Christmas tree that we had investigated before, she said “Oh, now there are lights on the tree!” WOW!! Some blinking lights were on the upper part of the tree (very small tree) and I asked her to look up at them and she had to turn her head away because they were too bright for her. WOW again as she has not been able to see the lights on a Christmas tree before even with the room completely dark and this tree was in full light at the nurse station! Lydia said it all so matter-of-fact that it took me a minute to realize what she had just said. The miracle is happening, folks!! It is definitely a “Thank You God!” time. Also, her pupils are equal and reacting appropriately to light which they have never done.
Thank you to everyone who has helped us get here!!
43 comments January 18th, 2008
What a rollercoaster ride today has been. Lydia’s fever cleared this morning and she was back to being herself. We had a good time playing, she played Bop It with another visually impaired gentleman from Missouri down the hall. She was even patient while he was learning the game. We also visited with another girl with ONH/SOD and her mom this afternoon-they arrived just a day or 2 ago.
Then Lydia started to get a bit needy, said her legs felt weak when she was standing. She has pain in lower back and bottom when sitting, tingling in legs when her legs or spine are on stretch (PT’s read:positive neural tension signs) Then she started to get her fever back. It was higher this time 38.8 C which had me worried. She has had some OTC meds to resuce the fever and now it is coming down. Momma kind of freaked out for a little while- sometimes having medical knowledge is a bad thing when your child is sick. It seems all is OK now, the nurse just took her temp and it is 37.0. Looks like I might be able to sleep tonight afterall……at least until she wakes up at 3:30 am and says “I’m tired of laying down!” (This is my usual wake up call)
Lets hope tomorrow is a wonderful and worry-free day!
18 comments January 16th, 2008
Unfortunately, Lydia is experiencing some typical side effects from a spinal stem cell treatment: headache,vomitting, fever. Her temp is rising and is now 100+ and the nurse went to check with the doctor about more meds. She has had a rough day-first the headache,then vomitting, now fever. This morning an opthamologist tried to see her for an evaluation, however he wanted her to do the most difficult thing-keep her eyes open with a bright light shining in it. I tried to explain it was a very painful thing for her, but the doctor persisted and ,of course, was unsuccessful. He came to the room later in the afternoon with the same result and with Lydia crying uncontrollably. Then, due to her symptoms, IV fluids needed to be started again. Unfortunately her right hand IV was bad and burned, had to put in new IV on the left-more sobbing. The new IV was better, her favorite nurse Sophie put it in and I think that helped her. Now she is sleeping and I have to wake her to give her Ibuprofen. I hope tomorrow is better and this doesn’t happen after every procedure!
22 comments January 15th, 2008
Lydia had her first stem cell transplant yesterday. All is well today, she has a slight headache and occasional nausea but overall good. I must say, she really is a brave little girl. All of the doctors told us she was brave in the OR. We were all caught a little of guard yesterday because they came early for her, she was scared and tearful going into the OR which made me a bit tearful as well. She did not have sedation because it being her first time, the doctors wanted to make sure she was reacting well to the transplant. Lydia said,”The doctors rubbed my back like they were giving be a massage” I asked if if she felt the needle in her back and she said “no, I didn’t realize the doctors put a needle in my back”. After a few minutes of being back in the room, she was back to being herself. She was so sweet and said,”I think I am starting to see a little, I think I might be able to see the IV pole. Well,maybe” This was 2 minutes after the procedure. She really wants this to work about as much as the rest of us.
The difficult part of the day was that she was not able to eat or drink for a few hours before and after the procedure and not able to get up or more improtantly lift her head for 6 hrs after the procedure. She got to experience the bedpan and thought that was pretty cool-she had several experiences with it as she had 3 bags of IV fluids run -kept me busy!
Lydia continued to appropriately praise herself for being brave and not getting too upset. “Now I will know what is going to happen, so next time I won’t be scared”, she says. What an adult trapped in a little body!
Today will be a recovery day for all of us as I did not sleep much, checked on her frequently as did the nurse all night. I hope for both of us to get some good food today and enjoy being together. The doctors will round in a little bit and take out her IV which will make her happy. Her next stem cell treatment will be on Friday and will be an IV only. She will be able to eat,drink and run around as usual that day. Thanks to everyone for your continued support. Keep the comments coming, we really like to hear from everyone.
4 comments January 15th, 2008
We are having quite the adventure during our stay in China. We have experienced some unusual things the last couple of days. Apparently the rules of driving are much different here-I am not sure if any exist as cars frequently cross lines to pass,run lights,come within an inch to the side of another vehicle. No one seems to be too bothered by it all. We have witnessed some very interesting foods. In the elevator some food was being delivered, one dish was a partially dead fish in a bowl of broth and noodles-it’s tail would move intermittently! That was a long elevator ride! I can’t even talk about the things I have seen at the supermarket in the way of meat-live,partially live and recently dead. It is difficult to be a vegetarian here! Lydia has been eating a lot of McDonalds and KFC when the delivery order is correct. I am becoming very hungry, but we are able to find fresh vegetables at the market down the street. We have had fun taking a rickshaw ride from the market to the hospital, some are bicycle/man powered and some are motor scooter powered. We have a good time experiencing lots of differences in our cultures. Lydia is becoming quite the world traveler and is talking very pleasantly about some of the cultural differences already. I am very proud of her.
Today will be her first stem cell transplant. It is scheduled for 2:30 pm , she cannot have food/drink for several hours before and after. she must also lay flat for 6 hrs after the procedure. I hope she will be sedated enough to sleep as that will be difficult for all if she is not. She understands why this is important and has been very cooperative. She is excited to have this procedure today and says, ”Maybe when I get done with my treatment I might be able to see”.
Please keep us in your prayers today for her safety during the procedures (she will be sedated) and for the stem cells to begin to heal and grow her optic nerves.
15 comments January 14th, 2008
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