Hi Tina, its 8;30 here, Allie is being alittle difficult to get to bed. She has been fussy since 5. Tait just got her up and brought her into the lobby and she had a big smile on her face. What a stinker, now I see the 3 year old in her. She just wants her way. I hope you got the email with the photo,isn’t it great. Today wasn’t a great day for her, fussy in general but then tonite as we were trying to get a last meal in to her I tried to distract her with her pooh bear toy and again she started smiling and it lasted thru about 10 songs on pooh bear. So we are seeing these highlights in our days with her. Oh and when she was smiling tonite she was also giggling several times. Tomorrow stem cells again,I know thats wahat were her for but I just hate it. Can’t wait till its over. I can’t even imagine how much Megan must be changing. We don’t have alot of time to think of anything except whats happening here. I have been drinking Chinese beer(no sparkling wine here), Tait said to Allie tonite “you’re turning your gramma into a drunk”. Well it does take the edge off. Were half way thru all this-and I think we will leave with some incredible memories. More later Charlotte
June 17th, 2008
Tanya got pics of allie smilling this morning in therapy! Allie was crying alot as usual and then tom picked her up on his lap and she smiled at him. I was not there , in kitchen making breakfast. She was still grumpy yesterday still needs to do ka ka more, but not crying terrible for bed. Afternoon therapy is mild because she sits in our lap for electric wave and accu. Yesterday she sat in Tom’s lap for accu. while jason (the accupuc. guy) did the inserts. Soon she got uncomfortable and I held her. She still gets the accu. in the same spots on her head. The cells must be doing something because the smiles are longer and now more often . Iwill certainly let you know as they happen.
Tait
June 17th, 2008
Allie and I have been up since 5 am. She went to sleep about 8:30 last night and slept thru. Yeah! We both woke up well rested. Allie was happy and very loose, instead of being in a ball she had her legs stretched right out. So we played in bed for awhile and did more stretches. I know Tait told you about her smiling last night. It was pretty incredible. It lasted almost 2 full minutes with 6 or 8 smiles. After that we went into the lobby to visit with people. Allie’s little friend was there (the six yr old boy with impaired vision). He was bouncing on a ball and singing. For ten full minutes Allie could not take her eyes off him and all that time she was sitting up perfectly straight on my lap with me hardly even holding on to her. So these moments are really neat. But of course we still have fussy Allie and slumping Allie alot of the time. Though the next couple weeks will be interesting. I noticed that when we did electric wave therapy yesterday the therapist moved it from 10 volts or whatever it is to 20. I guess he goes slow in moving it up since Allie can’t tell him what is uncomfortable. Though shes not had any discomfort yet or she would surely let him know. More later, Charlotte
June 17th, 2008
Allie gave huge smiles playing with her toys
. These were the longest smiles we have ever seen. Long enough to get a couple of pics. Here is a one!
June 16th, 2008
Yesterday afternoon and nite was hard with Allie. She was constipated again and by evening in pain, we soppositoried her a couple of times and she pooped or as they say here ka-ka’d some, but was still in pain. We called the nurse in who got a doctor who wasn’t helpful the language barrier along is such a problem unless you have a translator and they are not always available. But then the nurse found “the man from a healing family” and he came in and did accupressure which seemed to help a little, at least Allie liked it. He showed us how to do it when she is pushing, as it will help her muscles open more. He also wrote down an oil to rub on her anus that will help, so we will pick it up at the market. After all that I was trying to get her mind off her discomfort, so I brought the little poo bear doll that lights up its face and plays music. And all of a sudden she just got enthralled with it, her face literally lit up too and then she just gave a big beautiful smile, kept watching, and then another huge smile.
So the nite was rough for Tait, and this morning we had to wake Allie for her therapy session. She wasn’t too happy about it but did pretty well. I told the Therapist that she was still a little constipated and asked if he could do some therapies to help with that, which he did. In standing therapy she only lasted 20 minutes instead of her half hour, but that’ s ok. She is sleeping now and as is the usual schedule now she will have electric wave therapy at 2:30 and then accupunture. I don’t know if we really notice any change yet, this morning when I was dressing her I stood her up like I always do to get her pants on , but this time instead of being floppy, she stood right up and after I pulled up her pants , I held just her arms while she stood. She seems to be moving her arms up more, but I don’t remember how much she was doing that at home. This morning when I was feeding her in the dining room (in her stroller,with her brace on) she just kept kicking me so much I had to take her out of the stoller and her brace. Also the other day when the nurses were taking the IV out of her leg she was kicking them with both legs equally. Tonite and tomorrow nite Tait will stay at the hotel. He definately needs a break. It is getting very noisy in the lobby. Unfortunatley our room is right acroos from the lobby. Tait is going to see if we can get another room, but everything is probably full. Love, Charlotte
June 16th, 2008
Hi everyone,its Sunday afternoon,Allie had her first spinal tap yesterday at 3;30 finally after two postponements. After all the planing and plane trip to get here and then waiting for this to happen, when it finally did it was very stressful. All of a sudden there’s the fear that something might go wrong and here we are in a Chinese hospital where most of the doctors don’t speak English. Allie’s treatment took 1 hour, but the little boy in the room next to ousr(he went before Allie) was only in about a half hour so I got all worried and went upstairs looking for a translator to find out why it was taking so long, but she said it varies, no worry.And then when I went back down she was done anyway. She was still conscious but groggy. Up in her room she fell back to sleep and slept til 1 am. She was hungry as she had’t eaten or drank any thing since 8;30am.Tait says she was very perky and she was happpy and perky when she woke up this morning at 7. This morning we played ball with an eight yr old girl who is here with her mom and her dad who had a motorcycle accident. Allie is still a little tired this morning and took an early nap and will probably take another. This afternoon I have to go to the market, we are out of food. There’s really no place to store it so we have to shop every other day. Buying meat is scary and today Tait has a stomach bug. I’m finding the stay here easier than Tait. He complains about the heat(the hospital doestn’t have air conditioning) but we have a fan and often a nice breeze comes in the window. I find it very comfortable and I’m sure Allie does too. The bathroom has a bit of a sewer smell, but it is clean. And of course they just do things different here then in US. The food thing is the hardest. Tait found me coffee the last time he went out. Yeah. Every day the nurse comes in and takes Allie’s temp and ask if she went ka-ka today. The nurses are very nice. They are very good about doing IV’s they look and check and take sometimes 10 minutes before they decide where to stick her and then they do it right. There are alot of interesting people here. I can’t remember who I’ve mentioned. There are some guys who have spinal injuries. There is also a 17 year old girl who had encephalitis when she was 13. There are a couple little boys who are mostly blind. And there is a little bot next to us who is 2 and a half who is autistic and another little boy who is similar to Allie who had a blood clot on his brain and had surgery when he was 5 weeks old. I was talking to his mom last night and her story of the ordeals and stress and lack of sleep sounded just like Tait and Tinas. He already had stem cell treatments in I think in S. America and someother kind of alternative treatment, his mom also takes him to a naturopathic doctor. She lives in Missouri which on a list of which states that offer the most in services rates 43. She only gets 7 hours of respite a week and nothing else. I think she and Tina would really connect and be able to give each other info, I’ll get her email address. Uh oh I hear Allie crying, more later Charlotte
June 15th, 2008
Allie is a super hero! She slept until 1:00 am. I got her up slowly and she did fine , then on lap and fine. I made a big bowl of yogurt and applesauce. She ate it all. Then she had super energized and wanted to stand and play and shake for two hours!!!!! Finally I put her to bed and she got really mad and was biting her pillow. So I made her a huge bowl of the baby cereal mixed with room temp milk. She ate it all !!! I was so tired had not slept for 20 hours at that point so I put her to bed. She hardly complained and slept till 6:30. Now she’s up and very perky. One of the children woke up after his treatment and they had to hold him down for 4 hours. He also woke up early this morning and was screaming with a fever. Now he is fine. It was his first as well . I was told about a little boy getting acupuncture for his drooling they said it worked well. It is interesting that the accupuncture is different for each person. Another child has it for his lack of speech/ autism.
The next spinal injection is scheduled for Wednesday at 2 pm (China time).
Tait
June 15th, 2008
This is at Allie’s 3rd Birthday party (May 2008).
June 14th, 2008
The next time Tait opens his email it will be father’s day! What a father he has been:) He and I talked on the phone last night. Allie has been waking at 4 am (which is weird because Megan has started doing the same thing). So Tait starts their day with the Rocky theme song!!!! Allie really likes it! She is a happy little chickadee in the mroning anyway… adding Daddy and Rocky music I am sure makes it the best for her. They have Sunday “off”… no therapies, treatments, etc. So hopefully they will do something nice together. Even if they just recuperate in bed watching Indiana Jones movies, it will be fun for them. Tait and Charlotte said the air quality is questionable. There is a constant smog and many people wear masks when out and about. So it may not be best to bring Allie out much while her immune system is down a bit.
I wish we were with Tait and Allie on Father’s Day 
I miss them both so very much…two more weeks to go.
Tina
June 14th, 2008
After some more delays, the first spinal treatment happened Sat., 2 pm (China time). Many people got treatments today. It was scary. Anesthesia is always scary, even more so when you don’t know what they are saying. They would talk so much and then the translator would give me one short sentence. The shot in her but made her scream and cry so bad. They said it would take about 20 min. but we waited for an hour. They let us in to see her and she was very out of it looking but not asleep. Three little kids got treatments today . The two boys have to be held down. Thank goodness Allie is asleep for now. Allie gets her 2nd spinal on Wed. I am now a little worried how she will handle so much in such a short time mostly because of the anesthesia. Anyway it is realy good that we are not alone and so many others are here doing the same thing. Ii took the video cam to market today, and finaly found real coffee for everyone . I will certainly e-mail tomorrow about post treatment.
Love ,
Tait
June 14th, 2008
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