Posts filed under 'cp'
Hi friends and family!
It’s been quite a long time since I’ve updated this blog. Has anyone ever found out what mischevious little creature comes into your life and takes away your extra time in the day? Most of you have probably given up on checking this blog for updates……….sorry.
But my lack of writing definitely has not been due to lack of improvement to report for Jillian, I’m happy to say! Yes, she has showed really big gains…..and in such a short time! They’re things that are so big for a brain-injured child.
As most of you know, that followed our blog while we were still in China, Jillian started “clapping” her open palms together pretty much immediately, right after the first IV injection. Before when she would clap, her thumbs would be tucked inside both fisted hands. She is still able to do that, and use her right hand much more and open her right hand on command. Anyone familiar with a child with cerebral palsy, you know that that is significant all in itself.
Since returning home (we’ve been home about a month and a half), she’s had the very best gain that could possibly warm a mom’s heart……… Before the BMT, whenever she would give me a kiss, she could only kiss me with her mouth wide open. Within 2 weeks of being home, she’s been able to close her mouth to kiss me………and even better, she gets a little pucker on her beautiful little lips!!!!!!! And her pucker is getting better and better too! Poor kid…..she must be thinking “enough kisses already Mommy!” I get kisses from her ALL the time! It’s my favorite thing! She’ll kiss me, I can’t help but to get all excited like it’s the first one, and she’ll laugh…..I say “okay, one more kiss!” “Another kiss for mommy!” “Just one more!” “Okay, last time…one more” “Quit laughing and pucker up!” She gets as proud of herself over each and every kiss as I do!
Next, and this is a biggie, she’s been able to support her weight on her little arms when I put her in a 4-point crawl position! Do you have any idea how huge this is?! She has NEVER been able to do this before, even slightly. When I would place her in that position, on her hands and knees, she would just collapse down like a little rag doll. Now, she’s supporting her weight on all four limbs! The legs are better than the arms……..she’s able to push herself up to a kneel position, all day long, like she’s been doing it forever, an old pro at that…..her little legs push up….then back down…..back up…..back down. I usually position her arms for her, then she’ll hold strong…..until she starts laughing so hard from being proud of herself and then the arms will go back toward her body automatically. But she can DO it now……and it’s getting better daily! Do I even have to tell you that the first time she did this, I cried huge happy tears?! I was all blubbery with the biggest smile on my face.
Her sitting is getting MUCH better too. We’ve been sitting on the stairs together, me on the stair above the one she sits on, and we read books, and she sits up pretty much independently. I don’t even hold her at all, just put my arms around her like a cage while holding the book (but not touching her), and she sits up strong. She wobbles some, like she’s had one marguerita too many, but she compensates her balance 90% of the time and catches herself and rights herself.
Jillian has a 4-yr-old cousin, my niece, and she has one of those motorized Barbie Jeeps. Well, I was nervous about letting Jillie sit by herself in it……..before, no doubt about it, she would have flopped over constantly, and I would have had to walk next to her holding her shoulders so she wouldn’t fall over; her balance would have been horrendous, especially on grassy, uneven terrain. Well, her sitting has been so good, I decided to let’s try it. I sat her next to her cousin in the Jeep……..all I did was put one of those flat bungie cords around her chest and hook it to the back of the seat….super loosely, not tight at all. She rode all over the property with her cousin in that Jeep! With the hugest smile on her face! And all I did was walk next to her holding just her hand!
There are other things, just that she seems to have grown up a lot. (Don’t know how I feel about that…..I don’t want her to grow up!!!!!! 
I want for her to stay my little little girl forever!) But it seems that I took a toddler to China and brought back a 4-year-old little girl. Like before when we would read books, most of the time she was just interested in turning the pages……now she follows a story and points out things in the book.
So I knew that this would not be an overnight cure……that it would take time and determination, on her part and mine, and deligence, a faith in her, and in God…..and patience. But it seems that, indeed, it is paying off……that the hope we all have for her is manifesting into reality, into a little girl that is able to control her little body more and more….. And to watch the realization on her face when she knows she is doing something she couldn’t do before is priceless.
We’re going to the Florida area for hyperbaric oxygen therapy for the month of January. It is recommended 90 days post stem cells……that is the optimum time. Which that is right about the time that I was told that you usually don’t see any big gains until that timeframe anyways. So by that time, those little cells have set up camp in the damaged area of her brain and have a good foundation to start rebuilding brain tissue. Doing hyperbaric oxygen therapy will be like giving Miracle Grow to those new little brain cells. I can’t wait to see what will happen once we start that! And I definitely let all of you know too.
I hope all of you will still check in and read the blog from time to time. Like I said, there hasn’t been a post for so long, you’ve probably given up. And remember, I LOVE those comments! Don’t forget to post a comment to us!
Thanks for all of your prayers that are still rolling for Jillie Bean!
With love, hugs, and smiles (and Jillie’s new pucker kisses!),
Tami and Jillie
P.S…..Just a side note….if there is anyone here that has received e-mails from Carole, could you please let me know? Just e-mail me privately at tamalalee@aol.com. Thanks…I appreciate it.
November 22nd, 2008
Hello friends and family!
I’m sooooooooo sorry that it took me so long to write this post that I promised to do so much earlier! Bad bad Tam!
Do you know that jet lag isn’t just a phrase? It’s real. Very real. It took a few days before I had even a little energy. Not to mention that it took Jillie a while (and she’s still working on it) to adjust back to U.S. time. Every night, every single night, she’s usually wide awake by 2 a.m. and stays awake for 3-5 hours. I pretty much anticipated it……so 5-7 times a night I go and put her back under the blanket after she wiggles out, then I’ll catch a half hour of sleep, maybe even an hour, then go do it again when she lets me know she’s cold.
So the last day at the hospital, so many people came to our room and told us good-bye. I’ve left a lot of wonderful people behind at the hospital that are still there as I write this post. I can’t believe I didn’t get a picture of some of my friends there before I left!!!!!!!!!!! Man, oh man…….
I miss LaLa very much. She was such a beautiful, caring person, and she genuinely loved us too. The morning before we left, LaLa came to me and put a hand on each of my shoulders and spoke softly in Chinese and had tears streaming out of her eyes. We hugged for a very long time and she embedded herself even more into my heart. We have exchanged addresses so we can stay in touch. I’ll definitely send cards to her with pictures of us in it. I thank God she was there, for the whole three weeks we had her. Not only have I made a dear friend, but the last three weeks would have been so very hard without her there to help with Jillian. And I think she loved every minute she spent with Jillie Bean too. The cool thing is that neither one of us spoke a word of each other’s language, but we still managed to make each other laugh and to communicate just fine.
Just at the last minute, me and Jillian and LaLa brought out the flowers we got for the staff and the banner. We took lots of pictures and I had some tears in my eyes. Then we were whisked away to the elevator and to the mini-van waiting to take us to the airport.
She was such a good girl on the flight home! I couldn’t have asked for a better angel. It was a good trip home………AND it was shortened about an hour and a half. I think the flight home was about 13 and a half hours. She slept pretty good. I even found a semi-comfortable position where I could catch a little shut eye a couple of times. We had a row to ourselves. The man that was sitting next to us was nice enough to take another empty seat on the plane so we could have more room. I found that if I put her head toward the wall, I could lay my head on the other end and keep my legs on the seat behind her so she wouldn’t fall out.
Her tummy didn’t hurt one time. I packed food for her because I didn’t know what the airplane food would be, if there would be dairy or not; which was a good thing, because the only thing that didn’t have dairy (cheese or butter) was the Asian choice for dinner of sweet and sour pork with jelly fish as a side dish.
The airport assigned a nice lady to help us get through the airport. I was surprised that when we went down the actual gangway (I don’t know if it’s called a gangway on a plane or if that’s for a ship…but you get the idea) to get on the plane, there was a second bag check for carry-on luggage. They were adamantly going to take away the soy milk I brought, that I had already talked them into letting me keep at the first checkpoint inside the airport. So I got out my trusty Chinese phrasebook and pointed to the word “allergy,” and after much consideration they finally allowed me to take it on the plane with me. Whew! The flight attendants helped me get the carry-on baggage down the narrow isle to our seat while I carried Jillian. After the flight, the flight attendants helped me carry it off to Jillian’s waiting stroller. In Atlanta, they finally got someone to help me push the cart of luggage while I pushed Jillie in the stroller with the carry-on bags.
And then…………a sight for sore eyes…………….BRIAN!!!!!!!! My handsome hunky hubby!!!! DADDY!!!!!!!!!!!!!!! I held onto him so tight when I saw him! And Jillian was so happy to see her daddy! She reached up to him to hug him and she couldn’t wait to show off her new clapping skills. He got our luggage off of the baggage claim belt and we loaded up in our van, with a car seat for Jillian, and we drove the 2 and a half hours home. Jillian and I slept a lot.
When we got to the house, I just stood outside….. and breathed in the fresh air……..and listened. Quiet. I mean, the hallways of the hospital got quiet at night………….but it was nature……..crickets, the wind blowing and the trees rustling. I could see the stars. Aaaaaahhhhh. The hospital was a million miles away……..okay, more like 15,000, whatever, but we were home!
Jillian was so happy to see her cat, Sabre. He was so happy to see us. Which didn’t help her sleeping at night, because he decided he wanted to be right next to his little girl, so he got in bed with her and she would lay there awake at night petting him. He’s hardly left our side since we’ve been home.
So I haven’t been on the computer much at all. There were days that I didn’t even touch it. So, hence, the delay in this post that I’ve neglected.
I’ve got some pictures of our official send-off at the hospital. It was a emotional time, that’s for sure. When we were walking to the elevator with Jillian and the luggage, I had some tears in my eyes.
But first, I’ve got many thank-you’s that are much deserved. Thanks, first and foremost, to my wonderful mom. Without her this trip and opportunity for Jillian would not have happened. And she made the trip with us and loved us like a mother/grandmother does in grand style. And to many of you that made contributions to help us get there and keep us afloat while we were there. You all know who you are…..and I will forever be grateful. And thanks to Carole for coming to China to support us. And thank you, every single one of you, for your posts sending love, prayers, and encouragement. You have no idea how much every comment meant to me. Please know that you kept me lifted up. I love ALL of you!!!!!!!!!!! THANK YOU!!!!!!!!!!!!!
I will keep up this blog so I can share Jillian’s progress with you all as the miracles unfold. As I know they will. This journey will change our little girl’s life!
So…..here’s some pictures of our farewell with the doctors and nurses and staff at Xiaoshan Hospital in Hangzhou Province, China………..
First, our farewell to Dr. Mike…..a great doctor and a great Dad….. I sure do owe him a lot
And Luca………..he was there for us a lot too
group photo with nurses, doctors, therapists, and interpreters
And of course, LaLa, my Chinese friend
This is the banner I told you all about that I had made to present when we left to express our appreciation
This is an old pic, but it shows again how they display the banners that people have made for them
Of course Jillie had to say good-gye to her (our) friend Zim
LaLa asked if she could make the drive to the Shanghai Airport with us. Bless her heart. I didn’t even attempt to try to take Jillian away from her on the whole drive. She held her so closely. Jillian fell asleep in LaLa’s arms. Oh, and there’s a pic of me too.
Here are some of the pictures I gathered while I was there of friends made at the hospital that were there for stem cell treatment too. I could just kick myself for not getting pictures of Hillary and Nicholas and her mother from Australia; and Agi and her mom from Romania; and Tori, Brenda and Debbie, U.S.’ers; or Lori and her mom from our neighborhood practically, Stuart, Florida; or Lucy and Johnnie, interpreters. Man, I can’t believe I let that slip!
Remember my friend Viorica…..this is her adorable-always-smiling boy Lucian. Jillian LOVED Lucian.
This is Nick and Nancy from the U.S.
This is Dan, Suzanne, and Ryan from Texas
This is Rebecca, one of the interpreters. She went a couple of places with us and looked for us.
This is Larry and Alecia from Ohio.
This is Judd, from Idaho, the guy Zim was there to help. And then Wengey was their helper that they had 24 hrs a day.
This is Bridget and Steen from Denmark. And also James, the accupuncturist. Jillian never got any accupuncture (whew!).
This is Jada from Tampa, one of my favorite nurses Casey, me, Jillie, and LaLa
Did I every show you the pictures of the sunset from our window? The almost-night scene, it doesn’t show all the neon lights that were normally lit up in full night, but you get the idea. And I love the other picture, because you can see the mountains in the background. It’s really pretty if you enlarge the picture.
Okay…….the next post will be of Jillian’s progress!
LOTS AND LOTS OF LOVE FROM TAMI AND JILLIAN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
October 8th, 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
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