Archive for September, 2008
Hi friends and family!
WE’RE GOING HOME TOMORROW!!!!!!!!!!! YAAAAAAAAAAAY!
It’s been an emotional roller coaster, but well worth it. And in hindsight, the time has gone by really fast.
I can’t post the pictures of the farewell with the docs and nurses like I promised. I’m sorry. But Dr. Mike wasn’t here today, and i wanted to wait for him to be here in the morning. I’ll definitely post the pics and an update when we get home. “HOME”………aaaaaaaaahhhhhhh, that’s a good word!
Unfortunately, Jillian and I are making the long flight back by ourselves. Carole has left us a day early in China. And that’s all I’m gonna say about that. It’s best not to leave any negativity on the end of this blog and this journey. I’ll just say that there’s a different side to the dear woman than most see. That’s all.
I’m packing up the computer after I publish this, so I won’t be able to read any comments until we get back home. There’s that word again…….”home”!!!! But, as usuall, I can’t wait to read them.
You all are loved so so so so much! I can’t thank you enough for your love, love, love you’ve been sending all this time and the prayers you’ve been deligently sending for Jillian’s success and healing.
We land at 6:25 p.m. in Atlanta on Monday! We’ll get to see Brian/Daddy! Yaaaaaay!
Send us some angels to help us out during this 15-hour-all-by-our-lonesome flight, okay? I’m tough! I can handle this! (I think…….?????)
Tons of love,
Tami and Jillian
September 28th, 2008
Hellooooooo!
SHE’S ALL DONE!!!! SHE’S ALL DONE!!!
As you may gather, Jillian had her LAST injection of her own bone marrow stem cells today! It went excellently too! Of course, she knew exactly what was coming when they came in for the IV and cried pretty darn hard. After the IV was in, Dora and Sesame Street band-aids made it feel much better. We wheeled her downstairs and Dr. Mike was right there during the anesthesia. They didn’t let her go to twilight this time, but wheeled her back while she was still aware. After the procedure Dr. Mike came out and told me that Jillian was smiling at him and holding his hand while she was going under and never cried. It was so fast…..she was out in probably a half hour.
When they wheeled her out she was still groggy. When she looked at me her eyes weren’t really focused; they kind of wobbled a little. She was very calm. I said “Hi baby!” and whatever else I said, can’t remember, and she reached out her little right arm to pull me in for a hug. Oh, man, I melted. I love every one of her hugs, but this one was even more special. And the hugging thing is fairly new too, but before we came to China. That started about a month before we left. But ABR, the therapy I do with her, gets all the credit for that. (And the pointing she started to do about two weeks before we left, taking her little index finger and pointing at things and starting to push buttons, ABR gets all the credit for that too, and LOTS of other stuff over the last year.) I am certain that between the two, ABR and stem cells, Jillian will be able to do so many things she sees other kids do!
When we got back to the room, she acted like an old pro. Never whined or cried. She knew that after each of her previous procedures she got a banana when she came back to the room, one of her all-time favorite foods. Get this………!!!!!!!!!……….she looked at me, with wobbly eyes, and said “ba ba.” She hasn’t ever been able to say the “b” sound before! She was asking for her banana! I mean, I know it wasn’t a direct result of today’s stem cell injection, but there’s something going on in that little brain of hers from probably the first ones! So chalk up another new thing she did! I KNOW they will keep coming!
She is running a little fever this time though. Oddly, when Jillian got a little fever after the first IV stem cell injection, all the other parents said that their kids didn’t get a fever with the IV one but only after the spinal ones. Jillian, up until now, has been just the opposite, only getting a fever with the IV and none after the last two spinals. But tonight she was running a fever of 99.2, which isn’t that bad, I know, I just wish she didn’t have to have one at all. So it is something that we’ll have to keep an eye on through the night and for the next couple of days.
I can’t wait to go home! I was talking to Jillian about it, and she can’t wait either. I can’t wait to see clear blue skies, to not have to wash dishes in the tiny bathroom sink anymore, to have a real refrigerator (that’s not the size of a postage stamp), to not have to mop the bathroom floor after each shower (there is not a separation between the shower and the rest of the bathroom…there’s a curtain, but when you take a shower the water runs throughout the whole bathroom and there is a sponge mop in there to mop it up when you’re done), to be able to give Jillian a bath at home and not in that concoction ………correction…..for DADDY to give Jillian a bath at home! To get back to eating the stuff we’re used to eating, and to have a KITCHEN to cook in!!!!!!!!!
It is customary for the patients to have a red banner made for the doctors expressing thanks before you leave to go home. I’ll show you what I mean in the next post…..I’ll take a picture of this one hallway where there are many banners left by previous patients so you can have an idea. I’ve ordered our banner and we’ll give it to the doctors and staff on Sunday. Also people do things like give a bouquet of flowers and special cakes. It’s a big deal when a patient and their family leaves. They’ll probably all pass Jillian around and take pictures with her, and we’ll do a lot of group photos; it’s like an official exit and it’s a very happy, yet nostalgic, moment. I’ll try to post the final pictures on Sunday night before bed.
I’ll start packing tomorrow so I don’t have to leave everything for Sunday. And then we leave about 10 a.m. Monday morning and drive almost 3 hours to the Shanghai Airport, do all that fun stuff there, then have a 15 hour flight to Atlanta. We’ll part with Carole then, sadly, and she’ll fly on to Florida so she can go home. Brian is meeting us at the airport and picking us up to drive us back to Alabama. I wish he could meet us on the other side of Customs and help me get all of our baggage through, but I seriously doubt that’s an option. So that’s all I’m worried about is juggling all of our luggage and Jillian in a stroller all by myself. Maybe an angel will show up to help!
Well, our little angel girl is sleeping soundly, and I think I ought to start heading in that direction myself.
WE LOVE YOU AAAAAALLLL! Thanks for loving us too and for letting us know!
Will write again soon (I hope)!
Love,
Tami & Jillian (And Carole too!)
September 26th, 2008
Hello!
Well, tomorrow Jillian will receive the last of her stem cell injections! (That is tonight for you) Right now as I’m writing this it is 11 p.m. on Thursday night for us. So 11 a.m. Friday for us (11 p.m. Thursday night for you) is when she is scheduled. She can’t have anything to eat or drink in the morning because of going under the general anesthesia. But the last time it wasn’t scheduled until 2:30, so it was so hard telling her she couldn’t have anything aaaaaaaaalllll day. Good thing we don’t have as long to deprive the little human food disposal of food this time.
I’m sure there that nothing will go wrong this time. I’m sure they will pay extra attention and give extra care to the administration of the anesthesia this time. Plus, Dr. Mike I’m sure will make sure. I’ll let you all know how it went.
Just real quick…..Jillian did do a little something else she hasn’t been able to do before! Tonight after dinner when I was making her drink her yuckie medicine in juice, she reached up and grabbed and HELD the cup ALL BY HERSELF! With both hands!!!! She was so proud of herself!!!! She couldn’t quite get the straw in her mouth (they’re slippery little boogers), so I just put the straw in her mouth for her and she drank ALL BY HERSELF! Do you think I was just a little bit happy??!!!! Just a tiny bit.
I mean, she hasn’t done anything that would cause that earthquake I was hoping for YET, but all the parents I have talked to (many were on their second trip here) said that it is really two to three months after getting the stem cells that major changes show up. I mean that makes sense. But the fact that she has shown little things already is so promising! And I do mean it is a PROMISE! Not just a maybe. She also really seems to have matured a lot while we’ve been here, seems like she grew up a lot.
I had a 4×6 picture made of Jillian to leave here in a Florida palm-tree-hammocky-beachy photo frame that I brought from home with me, and when I showed the picture to LaLa, our helper, she held it to her chest and I could tell she wanted it for herself. She held it to her chest and said “Jillie!” in a Chinese accent kind of way, and was asking if it was for her, and I nodded my head and said “yes, for you,” and she was so excited, said “shee shee, shee shee” and kissed the picture a bunch of times. It made her truly happy to keep that picture. She loves Jillian so much, genuinely. Even though we don’t speak each other’s language, we still communicate so well and can joke with each other and understand and make each other laugh. She’s my Chinese friend. It really will be very sad to leave LaLa. 
Do you know that when a surgery is performed, say, for instance, a tumor is removed, it is the custom here to bring the actual removed tumor out in a clear plastic bag and show it to the family? We saw a few of them.
Do you know that the little kids here, I mean the LITTLE ones, don’t wear diapers? They’re tiny little tots and they toddle around or are carried, and they wear little pants that have huge slits in them; it’s an opening from front to back and about all the way down to the knees? I’ve even seen a couple sitting in a shopping cart with their practically bare little bum. You’ll see a little boy that’s gotta go, and he just stops and pees……right then and there. They’re potty trained really early here.
We had a fun time this afternoon. Carole, Bridgette, and myself gave a bunch of the nurses and physical therapists and one doctor an English lesson. They LOVE it when you do that. They even have a note posted up in the rec room asking for people to take the time to teach the nurses English and to schedule a little class and prepare some kind of material for them. So they eagerly piled into the rec room and even more eagerly devoured every word and pronunciation we gave them. They practiced and practiced and watched your lips pronouce the word and repeated it over and over and took notes. It was great. Jillian sat in on the lesson and had a blast. Of course, no kidding, she thought they were all there for her. She’s such an attention ham! She kept looking at everybody and smiling and doing her newly-acquired clapping skill, waiting for the applause, also kept trying to say “quack” like a duck to impress everybody. Of course there were times when they were all focused on their paper/lesson, that they weren’t looking up, but persist she did, and all the while with a huge smile on her face, confident that she would get her deserved praise! And she wasn’t disappointed either.
Okay, I think I’ll get some shut eye now. Just wanted to make sure I let everybody know what time her next (and last) procedure is so you could keep the prayers coming! I’m confident that everything will go good, so don’t worry, okay?
And I still want to tell you how very important every single one of your comments to us are. Thanks for sending us the love. We can feel it.
Love to you all from China!
Tami & Jillie Bean (and Carole too!)
September 25th, 2008
Hi friends and family
I am so very sorry for not putting in an update in a couple of days. I know there are so many people that genuinely want to know how she is doing and how things are going. Between what I will tell you in a minute and her tummy issues, I haven’t gotten on the computer in too long. Again, I’m sorry.
Jillian had her second spinal injection (Sunday night at 2:30 a.m. for you). She is okay now, THANK GOD, but there was a very bad situation that developed. We went down to the surgery floor for the spinal as usual. She was very good and very calm. I noticed that the nurses downstairs (different than the nurses on our floor) were about to give her a different medication that I had not seen before. I stopped them and pointed out the medication and asked what it was. But I speak English and they really couldn’t understand……just “don’t worry.” I insisted more, asked the nurse that came up with us from our floor to ask them NOW what is this medication and why? There was some dialogue between them and she said “the anesthesiologist wants to try a new anesthesia.” I said, “Why?! The other worked just fine. Don’t change it. Is that dairy based?” The medication was milky white. I mean I’m sure it wasn’t actually milk, but you know what I mean…..we have to be careful because of her tendancy toward allergy. So Sophie, the nurse, adamantly insisted that she not get this anesthesia. A lot of Chinese conversation took place. Between all of this conversation I also noticed about an inch of air about to go in her veins through the IV. I pointed this out in time and they removed it before it got in. I looked at Jillian and could tell she was already partly under anesthesia, was already zoning, and pointed this out. They got her attention by calling her name and it startled her and she started to cry. You know how when a baby cries, they open their mouth wide and push all their breath out. That’s kind of what Jillian did, but she did NOT breath back in. She turned blue right before my eyes. Literally. I freaked out, telling them she is not breathing. There was more excited Chinese conversation. I’m screaming at them “Take her back NOW! Go! Go! Go NOW!” I was about to push her back to the surgery room myself. They rushed her back.
The wait was TORTURE. Pure hell. Dr. Mike came out and told me she is okay and the color is back in her face and her vitals are all good. Thank God too that he is personally taking care of Jillian. He’s THE best. I asked what happened. He said he would find out. I could tell that he was very upset about this. He went back in to do the actual spinal and came back out afterwards and told me that the problem was that there was too much time between Jillian being put slightly under and all the way under. He was extremely upset about everything that transpired and said that he was “making the anesthesiologist without job.” I don’t know if that means a suspension or if it means fired. I told him I didn’t want him to lose his job, and he said, “no, this is very serious. He will need to pay for this.”
During the whole wait Luca stayed right by my side in the waiting room and rubbed my back and did everything he could to make me feel better. He is genuinely a wonderful man and another person that I appreciate so much.
I’ll tell you, if I ever started to take Jillian for granted, I won’t any more.
When they wheeled her out of the surgery room, she was very calm and relaxed, not crying at all. My fear was that she would remember being in a state of crying when she “went out,” and would start crying again and not breathe again. But she was good when she came out, but still pale in the face. She gave a very small little whine to me, and I leaned over and spoke softly to her, and she was fine.
When we went out of the double doors into the public part to go into the elevators, as usual, the Chinese people crowd around Jillian. They were all crowded around her bed, speaking very loudly in Chinese, about 20 of them. When I covered Jillian’s ears, the doctor told them to be quiet, and they all hushed up and was in quiet awe of the little American girl.
We got back up to our room and Jillian was acting just fine. Each time she whines less and less. She was smacking her lips loudly, so we gave her a little bit of water; then she was “ummmm,” and I gave her a banana. She was SUCH a little trooper. She handled all by herself making her mommy feel better and more stable myself. She took her little finger and pointed up at a little cartoonish nurse-bear picture that’s by her bed on the wall…..I knew she was okay then. I breathed a sigh of relief.
She never went back to sleep though. She stayed awake the whole time that she was supposed to keep her head down and smiled and interacted. There were two bags of fluids on the med pole to go drip into her IV, and she never even paid the first bit of attention to her IV hand. As a matter of fact, I had to keep her hand at a certain angle the whole time, about 4 hours, so the IV would keep dripping, and she never even fussed about it. So we laid in her bed and played with her DVD player, her opening it and shutting it and opening and shutting it and opening and shutting it……So it was juggling the IV hand, the DVD player when she couldn’t open it one of the five hundred times, and feeding her a little sandwich. Man, she was a good little kid. Before the time was up for her to be able to lift her head, about 8:30, she finally fell asleep.
So it was a super emotional day, like being beat up with an emotional baseball bat, but Jillian cheered us all back up.
Her tummy is still quite an issue. It’s been going on now for…..well, tomorrow will be a week. It’s mostly after eating. But what are we to do? I mean the poor kid’s gotta eat! We’re making sure we give her stuff to eat that’s easily digested. And I already bought some canned spagetti sauce too. Looks like I’ll be leaving that behind for some other Americans that need a morale boost! It’s kind of like camping here, it’s not quite as good as what you make when you’re home, but you make do with what you’ve got. And when I say make do, even as far as the cooking “facility”…..ask anybody here that’s cooking…..a camp fire might be just as convenient!
Yesterday we took Jillian downstairs for an x-ray in the morning, and in the afternoon we took her down for an ultrasound of her tummy. ………….
Wait…..I have to stop and tell you something cute. This whole post, I haven’t been able to write it straight through….you know, Jillie needs attention or her tummy hurts, doctors come in (as a matter of fact I’ve been writing this for about two days and just saving it as a draft). But just now they brought in some herbal traditional Chinese medicine for Jillie to take for her tummy. It tastes HORRID!!!!!!! The face she made when she tasted it by itself was priceless. So they said I could put it in some juice, and I did, and Jillian knew what was in the juice and DID NOT WANT IT. I told her, “Jillie, you need to drink this to help your tummy.” She complained louder than I could talk. This went on for about a minute. Finally, I said, “Jillian, stop and think….” (This got her attention because some of the cartoons she watches, like Winnie the Pooh and Dora talks about stopping and thinking). I said, ”Jillian, stop and think,” she finally gives me her attention and quiets down, “when your tummy gets better you can start getting some of the yummy stuff again like cookies.” I put the cup in front of her with the straw and she drank it right down! PeeWee is such a character!
Anyways, back to what I was saying. The x-ray showed tons of air/gas in her intestines. The ultrasound showed normal. A stool sample showed that she does not have a bacteria. For some reason her intestines are just not moving like they should. I think it’s partly because of after-effects of anesthesia along with the fact that here she cannot pull herself around and roll around and travel through the house. I won’t put her on the floor here. A hot water bottle always soothes the tummy pains. I don’t know what else to say about the tummy gas pains. We just handle it when it comes up. I’m going to buy a hot water bottle to take on the plane ride home with us because I doubt she’ll be over it by then since she’s still got another spinal with anesthesia on Friday.
I’ve got a few pictures to share with you.
This is Jillian looking at her DVD case (her favorite thing) after getting her IV before the spinal.
Her Dora band-aid
And Sesame Street band-aids (as a distraction) because she was such a big girl….
Dr. Mike came in our room and hung out with us for a long time after Jillian’s spinal. Jillian and I are laying down and keeping occupied and keeping her head down. He enjoyed a cup of “coffee.” (If we can call it that….it’s tea bag coffee. Like I said, you have to make do with whatcha got when you’re so far away from home!) But Dr. Mike has taken a personal interest in Jillian and has never done that with any other patient……ever. He’s the head of the hospital. I just love him.
Carole held Jillian while we were waiting to go for the spinal and she fell asleep. Our neighbor, Steen, from Denmark, came over for a visit. He’s here with his wife Bridgette and they’re super nice. Steen rubs Jillian’s feet and does reflexology on them to try to help her tummy ache.
This is a fruit called dragon fruit. It’s a funny sorta fruit. I’m showing you the progression as it is peeled. When you peel the first layer it is bright pink, then under that it is white with black spots. It tasted okay…not the greatest thing in the world. But it was just an experience trying it!
Jillian had no therapy last Friday so we went out for a quick visit to Silk Street. It was really pretty. Everything (of course) was silk. Enlarge the middle picture and see the bamboo baskets (?) hanging from the trees. This is the day that her tummy ache started.
Jillian and LaLa visiting Sesame Street.com on the computer (which is another reason it takes me a while to get out posts because whenever Jillie sees me on the computer I end up having to bring her over and go to Sesame Street.com. She’s a computer hog.)
A few nights back I got to go OUT for a little! I went with Carole and Alica to the night market. Jillian had not idea I even left. I asked LaLa if she could come back that night after Jillian went to sleep and sit with her. So it was a very cultural experience. What I’m holding up is some octopus legs on a stick (eeeeewwwww!). I did end up eating some thin potato on a stick, thin like potato chips, and some beans on a stick. It tasted pretty good. Then there’s a picture of the man that made a little necklace for Jillian with her name in Chinese. Talk about authentic!
Just a few pics hanging out in the room. Jillie’s fingerpainting.
A typical day outside. But, there have been some days where it’s been clear enough to see for miles, though even then there’s still a little haze.
This is a picture outside of the RT Mart, which is where we get our groceries. Mainly what I’m showing is how everybody rides on mopeds here. You’ll see tons of them parked outside.
This is just a pretty picture (I took it myself, thank you!). I zoomed in to the top of this little mountain that we can see from the hospital, and on top is a park, with little pagodas and everything. It was at sunset when I took this, (stuck my arm out the window of our room—risked life and limb too!)
Carole might be able to add some interesting pictures. She’s seen a lot more than I have and is going on some more interesting adventures. She’s going on a tour of Hangzhou tomorrow and is going to West Lake on Saturday. So maybe I’ll be able to add some pictures of the ancient temples and stuff for you all to enjoy and see a little more of China.
Okay, it’s time to feed Jillie Bean some dinner. Hope her tummy doesn’t hurt afterward I don’t know if I’ve mentioned that I do have the ability to read your comments now. It’s been fixed for about a week. Only five days before we come home!!! Again, I look forward to hearing from all of you and passing along your love to Jillian.
Sending some love around the world….
Tami, Jillian (and Carole too!)
September 24th, 2008
Hi everybody!
I’m sorry I had you worried about Jillian. To tell the truth, for me, worried was putting it mildly. All kinds of crazy scenarios popped into my mind. It was a very emotional day.
She is doing better today, though it is not cleared from her system yet. She awoke in the middle of the night, smiling, smacking her lips to tell me she was thirsty. She drank a ton of water, was satisfied and laid there quietly on her side. Then I guess she decided she wanted something more, (which is a good sign, because when my stomach was messed up a couple of weeks ago I didn’t want anything to eat the whole day). I gave her some soy milk (they call it bean juice over here), and she went back to sleep. She woke up perky and happy. After a light breakfast, cheerios, her tummy was cramping up again, but nowhere near as bad as yesterday (thank God!). a hot water bottle made it feel better. Also, our friend Zim brought some organic ginger and some organic wild mint that he picked himself that grew along a river in Idaho, and we made some tea with honey, which I think helped her a lot too. Then we made some fresh chicken/vegi soup for her for dinner…..a very light meal, but still her tummy cramped up. Her tummy hurts after eating! What in the world am I going to do? The kid’s gotta eat! And try telling this little blonde whirlwind that she can’t have any food!!!! It’s weird, she’s fine when she’s sitting in my lap eating, but the minute I pick her up to move her, she stiffens and draws her legs up, and I know she’s hurting again. Also if she lays down on her back after eating.
The doctors have surmised that she has a bacteria in her intestines. I’ve always heard that you have to be careful to wash all fresh fruits and vegetables, and to peel the fruit. I’ve done that…..religiously. But now I hear that the Chinese cook everything. Now they even tell me that the water in the water cooler in our room should be boiled before giving it to Jillian. They say it’s fine for us adults, but for the children, boiling it is best. So now I’m pre-boiling all the water she gets and cooking EVERYTHING. The doc said that it is possible that the banana I gave her could have had bacteria……or the fresh celery or tomatoes!!!!! So ix-nay on the anana-bays from now on, and other fresh stuff. Also giving her some probiotics (the good bacteria).
After her tummy cramped up after dinner, they gave her some “stuff back there” to help her go…..and she sure did! She’s feeling better since, but I don’t think she’s clear yet. I won’t bore everybody with the details tomorrow, I’ll just let you know if she’s back to normal or not. Promise.
We only have 9 more days until we can go home. We’ll be here just short of 5 weeks when we leave; 33 days to be exact. Sure can’t wait to see Daddy again!
She’s scheduled for 11 a.m. on Monday (11 p.m. EST Sunday night for you) for her second spinal injection. She’s still using that right hand most of the time, which she rarely used before coming to China. She’s turning pages with it, touching me on the face with an open palm, trying to clap with both open palms…………….THIS IS ALL SO HUGE! She’s always been bright and alert and interactive, but she seems to be even more so. Stem cells didn’t take away the little stinker that she can be sometimes though!
I haven’t given you all a tidbit of Chinese trivia/info in a few days, and I’ve been dying to tell you about the driving over here. Even describing it, it’s really got to be seen and experienced to be believed. But here’s a quote from Frommer’s, the Chinese travel/phrasebook I have, about traffic, and you have no idea how true this is: “Traffic is a major hazard for the cautious and the incautious alike. In Hong Kong and Macau, driving is on the left, and the road signs and traffic lights are obeyed. In mainland China (which is where we are), however, driving is on the right — at least occasionally. The rules of the road are routinely overridden by one rule, ‘I’m bigger than you, so get out of my way,’ and pedestrians are at the bottom of the food chain. Cyclists ride alone the sidewalks, and cars mount sidewalks right in front of you as though you don’t exist…” You have NO IDEA how true all of this is. Guess what, we rode in a rickshaw returning from the grocery store; our grocery bag was really heavy and it was starting to rain. It was such a cool experience!
Please remember that I can’t respond to your comments that you leave on the blog. Though I wish I could. And I’m sure I could if I could figure out how to do it. There’s not a person out there that’s left a comment that doesn’t mean the world to me. I know I’ve said it before, but I want to say it again…..thank you ALL so much for every word of love and encouragement and for every time you’ve said a prayer for our little girl!
(Just a side note…..as I’m writing this, Jillian was just giggling in her sleep! thought that was so cute and I’d pass it along. For anybody that hasn’t heard Jillie laugh, you don’t know what you’re missing. She’s got a very unique laugh, and I’m not just saying that as a biased mother. If you’ve got the time, go to YouTube and type in “punch drunk Jillie,” or my user name is TamiMoore333, and click on the video clip. It’s about 60 seconds long. It’s guaranteed to make you laugh! Let me know if you got the chance to view it!)
Okay, I think it’s time for bed now. We love ALL of you!!!!!!!! Thanks for keeping us in your hearts!
Love,
Tami & Jillian (and Carole too!)
September 20th, 2008
Hi everyone
Just putting an update because I said I would let everyone know everything that is happening. I don’t know why, but Jillian had HORRIBLE stomach cramps today. I’ve never seen her in this kind of pain. It broke (to put it mildly) my heart…..big time.
She had no therapy scheduled for today, was feeling great, fever totally gone and didn’t come back, so we decided to take advantage of the time off and get out of the hospital a little. We went to the silk market. She was doing great, she let me know she was hungry by doing her “ummmmm, ummmmm” queue, so I brought a banana to feed her, gave it to her. You know our girl, she loves food, so she was disappointed that the banana was gone so I started to give her a muffin. About a third of the way into the muffin she started being uncomfortable, like she had to go (all right I’ve got to be descriptive in this post, so weak stomachs beware) poopy, but it was a different kind of straining than she normally does. I picked her up out of the stroller to hold her and she acted like something hurt. Decided to go ahead and head back to the hospital to let her lay down. She laid down in the car with her head in Carole’s lap and feet in mine and was just fine. Got back to the hospital and she was trying really hard to “go to the bathroom,” but she acted like it hurt. A doctor palpated her tummy and said it is a gas pain. We put a hot water bottle on her tummy and it helped and she was laughing and trying to be funny. Figured, okay, she passed it, whew, she’s okay now. Fed her some scrambled eggs and tomato for dinner. She was in a great mood, looking forward to her bath and a little sesame street on the computer. Then I picked her up to put her in bed to go make her bath and she stiffened up and screamed. She cried and screamed so bad and was in such bad pain she was wet with sweat. This lasted about 45 minutes.
Dr. Tony said she was impacted (you know what I mean), and they gave her something rectally. It “worked” after about 10 minutes, and she fell asleep in my arms from exhaustion. The doctor and nurse left, I went to roll her over on her left side, and she woke up hurting and crying again and threw up. A lot more came out “back there,” all over the place, we cleaned her up, changed the bedding, brought her to my bed and I laid down with her again and she fell hard asleep. All I could do was hold her and tell her I’m so sorry baby. It broke my heart because she wanted me to fix it so badly. She’s never experience pain like that…..I mean when she was a preemie in the hospital and all the IV’s and stuff, but I’m sure she doesn’t remember that time.
Man oh man oh man I hope she’s okay now. She’s sleeping right now in her bed as I’m writing this. She’s actually moaning a little in her sleep right now. I’m afraid there’s still some pain in there, because when I moved her from my bed to hers and laid her down she whimpered and stiffened up and kept her legs close up to her body, but she was just so exhausted she fell asleep anyways.
I don’t know what could have caused this. It’s driving me nuts to know, so I don’t let it happen again. I’m wondering if it could be after-affects from the anesthesia? Carole said she’s heard of people getting bad gas pains after being under anesthesia. But that was two days ago. Was that banana bad? Her uncomfortableness started right after eating that banana. I just don’t know. If it’s from the anesthesia, then we have two more spinals to go under general anesthesia.
Ooooh, I just don’t know. We were going to go to West Lake tomorrow, but no way am I taking her out of this hospital. I mean we didn’t come here for tourist reasons anyway. She’ll get her next spinal on Monday (Sunday night your time). I guess I justed wanted to let everybody know everything that was happening with The Bean.
Oh, yeah, just a side note…..the air conditioning in our room broke last night. Yaaaay. They couldn’t get it fixed until this morning. We brought in a few fans and dressed lightly and didn’t use blankets. But it’s fixed now.
Okay…….sorry to bum you out…….really. I just thought I’d give you guys the good, the bad, and the ugly about this whole journey and experience. It’ll get back to absolutely terrific great real soon.
I know it sounds petty to ask to throw in some “Jillie’s tummy feels better” into those prayers from all of you after you’ve been praying for something, gee, a little bigger, like success with the stem cells and changing this little girls life, walking, talking….but if you can, we would so so very much appreciate it.
I know in the end this is going to be life-changing for Jillian! I had a dream lastnight that she was walking!
So we love all of you very much!!!!!!!!!!!!!!! Thanks for loving us back!!!!!!!!!!!!!!!! I’m going to bed now!!!!!!!!!
Love,
Tami and Jillie Bean (and Carole too)
September 19th, 2008
Hi everyone!
I’m sorry I didn’t get back on the blog to fill in the rest of the update on Jillian lastnight before I went to bed (which was the morning for you). By the time I got Jillian to sleep I was a little on the exhausted side. So was Carole.
But this morning (Thursday morning for us) she is doing really well. She did get a fever this morning, about 99.1, but we brought it down with Motrin. I am told that a fever after a spinal is common, though not will all patients, so I am not worried really. They can get a fever up to 2 days post spinal, so it’s something we will keep a close eye on.
But she’s handling this soooooo well! She’s such a little trooper! When she woke up after sleeping from the spinal, she was in a good mood (once I told her I would make some bread with jelly for her). She was very impatient for something to eat, to say the least. Since she had to lay flat on the bed without raising her head, including no pillow, I just fed her with her head turned to the side. After getting some food in her tummy she was in a very good mood. She tried to lift her head a few times and I held it down, then I talked to her and explained that if she lifted her head she would get a headache, so she understood and was a good girl about it after that. We had about two and a half hours left to keep her down. At 9:30 she was able to sit up and play. She went to bed at around 11:30 and slept until 7:30 this morning. (Whew! I was worried about that!) So we all got a good night’s sleep. I don’t know if I told you that the night before the spinal she was awake at midnight and stayed awake until after 4 a.m. (she’s done that a few times actually-but wasn’t supposed to do it the night before the spinal, for crying out loud!) and we had to wake her up at 7 a.m. The child wouldn’t take a nap today. (Aaaaaarrrrgghh!) I’m so hoping that stem cells helps her with her sleep issues. please???!!!!
Today marks three weeks that Jillian and I have been in China! Time has gone fast, really. Less than 2 weeks left! Her next, second, spinal injection is Monday (Sunday night for you), and the third and last is next Friday. Then we go home on the following Monday, which is September 29th. I can’t wait.
Again, EVERY SINGLE ONE of your comments/posts to us on the blog is invaluable. Every single one of them, from friends and family to the ones from complete strangers. Thank you SO MUCH for writing to us. Personally, it’s the highlight of my day to read a new comment. I look forward to it more than you know.
Gotta go……Jillian is practically begging to play with the computer. She’s got her hands all over the mouse. Maybe I can get Sesame Street on here and it won’t be in Chinese!
All our love!!!!
Tami, Jillie, and Carole
Love you
September 18th, 2008
HI HI HI!!!!!!
Hello everybody!
The first spinal injection is done and 80 million healing stem cells are inside her little body right now going to work! I’ll tell you why 80 million is so good; because with a typical umbilical cord stem cell injection they receive 10 to 15 million cells. Plus, these are bone marrow stem cells, referred to as auto-(something) (can’t remember the second part of that term right now…..but they’re better.) The last injection she had by IV was 20 million……………so that’s already 100 million received to date…..and there’s still two injections to go.
They changed the time of the injection. I had posted last that her scheduled time was 11 p.m. EST, but because I insisted that we take her to the 3rd floor for general anesthesia, they wanted to give more time between eating and drinking, so it was delayed for four hours.
Last night I was in the hall at just the right time and talked to another parent that is here and is very knowledgeable about the whole stem cell procedure. I was under the impression that when they went into the spinal room here on this floor that they were asleep, totally out during the spinal procedure. I was WAY wrong. No, they are not out, but just woozy and sleepy. He said that he had allowed his son to do the first spinal in that room and he woke up during the procedure and was screaming and they had to hold him still. He said that he had heard that from other parents about that happening too. The trauma from that could be horrendous. Then another mother (that just got here yesterday from Romania, and it is her second trip here) told me that she overheard me speaking with the father and that she wanted to add that that is absolutely correct, that that has happened with small children. The spinal room and the twilight is more suited for adults, not children that don’t understand what is happening in their back. Besides, when a child feels the needle, wakes up, screams and moves around, that could jeopordize the spinal stick. I mean, think about it, it must be very difficult to do something so precise when a child is trying desperately to get away.
So……I thanked them for their knowledge and decided without a doubt that I was not going to allow Jillian to receive the spinal under a twilight sedation. So first thing this morning I talked to Dr. Mike and told him what I had heard from the other parents, and he said, “Okay, no problem. I will arrange it.” And he got out his cell phone and put in a call to the anesthesiologist and the surgery suite to schedule Jillian in.
Poor little girl was sooooooo hungry and thirsty. She kept looking at me and smacking her lips, which is her way of saying she’s thirsty, and saying “ummm ummm ummm,” which is her way of saying she’s hungry. I had to keep telling her “I’m sorry, baby, we can’t have anything to eat or drink right now. It might make your tummy upset.” That would appease her for a little bit, then she would do it all over again, thinking maybe I had forgotten or changed my mind.
Before I forget, she was such a trooper about getting the IV put in. She knew what was coming when the nurses came in wheeling the cart and wasn’t happy about it. She did some exaggerated whining, but she didn’t scream and cry. It broke mine and Carole’s heart, to tell the truth. Again, they got it on the first try. But it wasn’t flowing very well and we were afraid that we were going to have to take it out and do another one, but the nurse was able to adjust it, and it started flowing again. Jillian didn’t want ANYBODY, including me, to mess with her IV hand, but I promised that the bad part was over and she let them, reluctantly, finish what they had to do with it.
*This is Carole filling in while Tami’s feeding Jillie: Jillie woke up at about 7:30, after sleeping soundly for about 2 and a half hours. She woke up in a good mood, and hungry. She’s eating some wheat bread with jelly, and a half an avocado. We have to keep her from lifting her head until about 9:30. Tami will finish the details when she has time. She’ll have an update before you go to bed. Have a good day, and wish us a goodnite! Love from Jillie! xxxxxxx
September 17th, 2008
Hi everyone!
So tomorrow morning (Wednesday for us) is Jillian’s first spinal injection of her own bone marrow stem cells. It is scheduled for 11 a.m. (So 11 p.m. EST on Tuesday night for you….10 p.m. CST) About an hour before, they will come in and insert the IV and start giving her fluids through it. She is not allowed to have anything to eat or drink after 8, so three hours before. Usually it is 2 hours before, but they are adding an extra hour in case she is not still and sedated enough for the regular transplantation room on this floor and has to be taken to the 3rd floor (which is a surgery floor) to be put under general anesthesia. So I need to make sure she gets breakfast and water before then. You all know how she loves her food!
As I’ve described before, this injection goes into the spine and directly into the cerebral spinal fluid which travels directly to the damaged ventricles in the brain. We have to be careful not to let her lift her head for 6 hours afterwards. If she does, it would increase the pressure in the ventricles and she would get a very bad headache for 2 days. So pray for that too, okay? A common side effect may be fever, nausea, and headache. But pray that our Little Bit doesn’t get any of those things.
I’ve included some pictures of the hospital so you can even picture in your mind where she is as she’s getting this done!
First of all, this is Aunt Carole. This is a picture of the night she got here. She was only here about 10 minutes in this picture. You can easily tell that Jillian is very happy to see her! If you click on the picture and enlarge it you can see a contented smile on her face.
Just some cute pictures of Jillian to remind you how darn cute she is (like you even could forget!) This was today in standing therapy. She’s getting to where she enjoys it.
Okay…..this is the view from our room to the right when I step out of our door. As you can see, the floor is kind of an oval shape. Just around this bend is what you see in the following pictures……
This is just around the bend from the previous picture. Ahead is the nurses’ station. Just BEFORE the nurses’ station is two rooms on the left where the stem cell procedures take place. One is the spinal room, where only staff is allowed, and the other one right next to it is the room where they receive the IV injections and I can sit with her. You’ll notice a big hallway area before the nurses’ station; that is where the patients lay in their bed right after coming out of the spinal room. They lay there for maybe 45 minutes to an hour. (?) Jillian will be laying in this hallway too right after she comes out.
This is the spinal room. It’s like an opaque glass, but you can’t see in.
This is the IV injection room that is right next door to the spinal room above. I’ve got another picture from the opposite angle where you can see the layout of the rooms better. This is just the view walking from our room so you can (maybe) orient yourself a little.
This is the view from the opposite way. Just around that bend is our room, on the left, right past that plant you see. Can you see the opaque glass wall on the right? That’s the spinal room. And the room just before it with the door cracked open is the IV room. And there’s the hallway in front of it where the patients lay in their beds for a little while post spinal.
Here’s the nurses’ station from the same first angle I showed you, just closer up. I’m kind of standing in the place where the patients lay in the hall in their bed.
And standing in front of the nurses’ station, looking through to the doctors’ room. (I hope I’m not boring you guys!!!!!)
Okay, so that’s the lay of the front area. One day I’ll show you the other side of the oval, where the big kitchen (HA! That’s a joke!!!) is and the play room and family gathering room are. And I called that the “big” kitchen because there’s another kitchen that’s literally a third of the size that is the only place you are allowed to cook in. And you all saw that picture I had in an earlier post of the “kitchen”; well, that’s the big kitchen.
Did you know that it’s not really true that Chinese say “flied lice”? They really do pronounce their R’s. They do say “fried rice.” Just another useless piece of trivia…!!!!!!
Here are a few more pictures to show you some activity around here………..
This is sitting and listening to Zim play the guitar and sing after standing therapy. Jillian is in her glory when she’s listening to music, especially when it’s played “just for her.” This room always fills up with tons of people when Zim is entertaining; just like it did right after this picture.
This is Zim. He’s a VERY good musician.
This is Jillie and me with my friend Verica from Romania. She and I have really formed a bond and we will definitely stay in touch.
Me, Jillie, this toy horse thingy that she keeps wanting to rub noses with (hey, I’m just the reporter….I have no clue why she does that!), Anna her therapist, Elmo, Carole, and LaLa.
Jillian sitting with Anna, her therapist, listening to Zim play. This Chinese girl thinks my American husband is movie star cute!!!!
Here’s Carole, on the computer. Can you see a glimpse of the view behind her out of the window? Some big buildings out there. At night there’s lots of neon all lit up. Also, that’s a typical day fog-wise. It think there was actually a little bit of sunshine that day. My poor mom didn’t get to see a single ray of sunshine the whole week she was here.
This is a picture of Jillian watching very closely as the nurse is removing her last IV from her hand. She wanted nothing to do with it, then I promised her that it wouldn’t hurt, so she trusted me and watched very closely to make sure the nurse didn’t slip up.
This is LaLa, our caregiver that is still with us during some of the day. She loves Jillian SO much. She is knitting a pair of shoes for me. Isn’t that the sweetest thing?! She works for the equivalent of 10 U.S. dollars a day.
Today she took great care of Jillian while Carole was preparing dinner and I was preparing lunch. We decided to cook earlier because other people want to cook closer to dinner time; and, no kidding, only 2 people at a time can fit in the cooking kitchen, and even then you are stepping on each other. While Carole cooked I carted the dishes into the “big” kitchen to wash them. No lie, this is really like camping. I usually wash dishes in the bathroom sink! This experience just takes a little adjustment, that’s all!!!!! 
And, last but not least, a picture of Jillian in her highchair, watching DVD’s, and hooked up to the electrical muscle stimulation machine on her legs. Ain’t she cute???!!!!!
Okay, that’s all of the slideshow for now, folks!
But seriously, please be thinking and praying about Jillian before you go to bed tonight, okay? I know this is yet another step to her recovery! She’s already shown some little improvements (did I say plural? Yes, I did!!!) And I thought about it to myself, about posting on the blog about her clapping her hands, thinking “What if I jinx it?! Maybe I shouldn’t say anything!” But then I decided, “No, I’m AFFIRMING it!” And there’s more improvements to come too!
So God Bless you ALL!!!! God certainly blessed our little wonder-britches with this opportunity! Thank you, thank you, thank you for loving us and telling us that you do, for all the support you give us! There’s no failing with all of you holding her up!
We love you!
Tami and Jillian (and Carole too!)
September 16th, 2008
Hi friends and family!
Everything is going very good with Jillian. IN FACT……she has something new she is doing! Always before, when she would clap her hands, it was always with her thumbs tucked inside her closed fists. So she would hit her closed hands together. Yesterday, as I was trying to get her to sleep and she was all relaxed, she took both hands and “clapped,” very clumsily, her open palms together. Yes, the right hand too; which if anyone knows her, her right hand is closed tight a lot….she kind of uses it as a stabilizer, so to speak. Well, it was so cute and momentus, because she too realized she was doing something she couldn’t do before. She looked up at me with a small smile, as if to say, “Mom, look what my hands can do!” I said, “I see, honey! You’re clapping with your hands open! Congratulations!” She was very proud and kept doing it. Of course, that messsed up any chance of taking a nap…..but that’s okay. She’s usually been able to do it when asked to……most of the time. She has been using her right hand a little more, for instance, to turn a page in a book.
I asked Dr. Tony this morning if it is common to see something so soon after a stem cell injection, and what he said was that it is not necessarily the stem cells, but it is the “elements” or “components” of the stem cells more or less triggering the nervous system, something about gathering all the stem cells together. (?)Now, remember that there is a degree of a language barrier in conversations. But it was said that It is a very good sign!
I also discovered just a little bit ago that Jillian’s brain injury is a little bit more than I had always thought for these past four years. I always just thought it was in the left ventricle only, but I have been told this morning that in fact it is in both ventricles. But he said this is common in cerebral palsy, and that she should still respond well to the stem cell treatment.
Also I am told that her first spinal injection COULD be tomorrow. They will let me know in the morning. That is Tuesday morning for me (Monday night for you). I’ll let you all know as soon as I find out. If it is indeed that she is getting the spinal tomorrow, then I will make sure to throw on a quick post so you all can include her in your prayers before she “goes to sleep” and receives the procedure.
Okay, she has fallen asleep while I was writing this post (Thank God! finally!), so I am going to run (walk) quickly to the grocery store and let LaLa keep an eye on her meanwhile. Gotta get there and get back quickly, so I gotta sign off and say bye-bye! Love you all!
Remember that I’m still not able to retrieve comments…….but I will be able to once they fix whatever is going on with this silly thing.
All right! Love to everybody! Have a great day!!!!!
Love,
Tami and Jillian (and Carole too)
September 15th, 2008
Previous Posts
