雪蓮感恩見證惜別會 XueLian Farewell party Video:see http://austin-tv.net
Thank you VOLUNTEERS!!! 謝謝大家的熱心幫助!!
Video below is also from Austin-TV.net (thanks to Hsu Wei), a compilation of the XueLian story
***
Xuelian will leave for China bright and early on Thursday morning, 6:45 am, if any of you are in the neighborhood and want to give hear a send off. She had a grand time at her going away party over the weekend with all of her new friends from Austin. I have attached a picture of Xuelian on stage with her admirers!
Thanks to all of you who came out to wish Xuelian well at her party, and we wish her safe travels ahead…….
Soon we will have another Chinese baby here in Austin!!!! On Saturday June 27th 3 year old Zhao Xiao will arrive with his mother, and Citizen's Inc is his Corporate Angel. This is the sixth child Citizen's has sponsored. Isn't that amazing!! Xiao is cared for by his grandmother, as both of his parents have to work to pay for his medical expenses. Xiao is very prone to colds and asthma, and is very weak, has little appetite, and walks very little. He is hot tempered and always hits himself.
(From HeartGift News Letter)
** Yvette and Mike signed up to be the host family, thank you!!!
** Other volunteer needed, details will be posted nearing the arrival date. A Zhao Ziao blog will be posted on this site.
** XueLian's farewell party is scheduled: 6/14 Sunday, 2-4pm at Austin Chinese Church
YOU ARE INVITED!! 邀請您抽空參加!!
Light refreshments will be provided by Light and Salt Services (光鹽服務社)
, and you are also welcome to bring goodies to share!!
****Sincere thanks to all of you that volunteered or prayed for Xuelian!****
**6/11 Xuelian update... and see you at the party 6/14!!
Xuelian continues to improve and has what is hopefully her final round of appointments tomorrow with Dr. Wright and Dr. Cortez. She is doing just great, and will most likely get a green light from Dr. Cortez, and then we will be able to send her back to China, pending her travel arrangements.
Thanks to all of you for continuing to inquire about Xuelian’s well being. She has been here a long time, but has been a remarkable patient, and she is a remarkable little girl, too. We couldn’t have made it through her surgeries and recoveries without her army of new friends and volunteers to pitch in along the way!
Alison Meador
External Relations Coordinator
** 6/9 XueLian update from Mrs. King
Xuelian is getting better every day. Peggy Wai came to visit Xuelian with a delicious fruit tart, 潘桃and her
two cute daughters came to play with Xuelian at the pool. Xuelian was afraid of the water but decided to give it a try after watching the girls having so much fun in there. She drinks cold milk instead of warm. Kids are learning so fast from the others. She asked grandma to take her to the pool again tomorrow. She also enjoys evening walks at the park and tries the slides. She's definitely upbeat and healthy now.
** 6/8 XueLian is doing great
XueLian went to checkup with the heart surgeon Dr. Fox this morning. Dr. Fox said XueLian's heart is doing great and can go back to China without needing to recheck again.
** 6/4 XueLian is released from hospital
Well, what can I say? Xuelian is doing incredibly well, so well that she was released from the hospital last night. She and Aunt Li are now back with the Kings, and she is scheduled for a final check up with Dr. Cortez in two weeks.
Xuelian’s going away party will be next weekend, so if you are in town, please come on by….I have attached an invitation with the details.
Alison Meador
** 6/3 Recover nicely
Xuelian is having a remarkable recovery, and Dr. Cortez is both surprised and pleased by her progress. She will have her foley tube removed today, and if she is able to urinate on her own, she will be released tonight!
Alison Meador
** 6/2 Successful Surgery
Xuelian’s surgery yesterday went really well, and she is resting comfortably in Room 308 of Dell Children’s. The procedure that Dr. Cortez performed is called a extravesical nondismembered detrussorraphy ureteroneocystostomy if you are into technical medical terms and would like to research it further! As we hear more about her progress, we will keep you posted.
Alison Meador
External Relations Coordinator
The HeartGift Foundation
** 6/1 Surgery today
Xuelian’s urinary tract surgery is scheduled for 2:00 today at Dell Children’s, and she is on her way to the hospital as you are receiving this email. She will be in surgery the better part of the afternoon, and then the recovery will be for a minimum of three nights at the hospital.
In the meantime, they have had some good news from China. Apparently Aunt Li had a friend back in China that went to some sort of government entity that provides funding for the poor to build a home. They just found out that Xuelian's parents qualified for these funds, and they will build a new wooden home to replace their mud hut! The building will take 2 months or so to complete, so when Xuelian returns home, she will stay with Aunt Li for a while before she returns to her parents and their new home. Cool, huh?
I will send an email tomorrow and let you know how her surgery went. Keep little Xuelian in your thoughts and prayers this afternoon, and thanks for all you do for HeartGift.
Alison Meador
External Relations Coordinator
The HeartGift Foundation
**Heart gift provide following link by News 8 report Xuelian's story at Dell Diamond Baseball
**5/30 Xuelian's Surgery will be on Monday 2PM (6/1) at Dell Children Medical Center
** Postpone Xuelian's Farewell party to June 13 (Saturday) 11:30AM-1:30PM at Austin Chinese Church.
Xuelian's second surgery on June 1 at Dell Children Medical Center. The procedure is called a bilateral ureteral reimplantation surgery. It takes about 3 hours and the stay is about two to three days in the hospital. Follow-up with Dr. Cortez two weeks later to determine when she will be able to return home.
**5/27 From Heart Gift Foundation
Xuelian continues to improve, she is feeling great, and is a true joy to be around. She will be attending the Round Rock Express game tonight, and get to see her two new best friends, the Ryan girls, who love to play with Xuelian. She is very excited about going to the baseball game, sitting in a suite, and has been chattering away about it each day with Rita and Aunt Li. Thanks Reese and Alison Ryan for providing Xuelian with this special diversion.
She has gained a pound since she has returned to the Kings, and that is a big deal for her tiny little frame! Her second surgery is scheduled for Monday, but the time has still not been set. As soon as we get more information about this, we will let you know. Thanks! And Go Express!
Alison Meador
**5/24 Welcome to Austin Chinese Church
This coming Sunday Pastor Shih's Sermon message will be "Xuelian's Story". You're more than welcome to Austin Chinese Church. The address: 11118 Dessau Road, Austin, TX 78754. Phone:512-339-8675. Please come before 11AM.
**5/22 From Rita King (Host Family)
"About VU Reflux"
Urine is produced in the kidneys and flows through the ureter, the tube that carries urine from each kidney to the bladder. A valve mechanism prevents urine from backing up into the kidneys as the bladder gets full. Urine leaves the bladder through the urethraand is eliminated from the body during urination.
In some children, an abnormality in the valve or the ureters allows urine to flow backwards, a condition called VU reflux. In mild cases urine backs up into the lower ureter. In severe cases it can back up into a swollen kidney. Usually, children with this condition are born with it. Other causes include:
blockage to the bladder
abnormal urination with very high pressure within the bladder
incomplete emptying of the bladder
urinary tract infections.
Xuelian had a chest xray at Austin Radiological at 12:45, then visited Dr. Wright at 1:30 pm. Dr. Wright was pleased with Xuelian's progress.
Since Xuelian is staying for another month, some volunteers' visits might brighten her days especially the ones have little kids she can play with.
**5/21 From Heart Gift Foundation
Xuelian continues to improve, and is doing remarkably well at home with the King family. She is scheduled to meet with Dr. Jose Cortez tomorrow with Children’s Urology Associates for a consultation about her urinary reflux problem. She is tentatively scheduled for surgery on Monday, June 1st and will have a bilateral ureteral reimplantation. The surgery should last about 3 hours, and she will spend about 3 days in the hospital recovering. Hopefully, this will take care of the problem, and she will be able to return to China soon afterwards.
Alison Meador
**5/18 From Rita (Host Family)
Xuelian is doing better and better each day. She's happier and more energetic, on top of that she's continuously eating so well. She's like hungry most of the time. This past Satuday we had Dr. Wright, Xuelian's cardiologist, her daughter and friend of her daughter came to visit Xuelian. Sunday Mr. Zhou and Mrs. Zhou and their beautiful daughter invited Xuelian and Aunt Li to their house, Xuelain had so much fun that she fell asleep on the way home. This morning Xuelian went for a walk without sitting in a stroller, usually she got tired and Aunt Li had to carry her but not this morning. Elizabeth Cheng brought some dumplings, fruits and nutritious supplements to visit Xuelian, Xuelian had a great time playing with Elizabeth. This evening Xuelian had her first taste of 空心菜 and she actually loved it. She is as adorable as possible.
** 5/15 XueLian and the Host Family need your help!!
XueLian is doing very well recovering. She has excellent appetite and high spirit. She will have some doctor appointments this week. The tentative plan now is to have kidney operation on June 1. Her kidney has some birth defects that need to be repaired. But it should be a small operation and probably 2 days hospital stay.
With the kidney operation, XueLian and her aunt are expected to stay in Austin for another full month. For this period the Host Family need a lot of help from volunteers:
1. Good to have volunteer to take them out each day or every other day for few hours. This will help brighten the day for XueLian and Aunt Li, and it also gives the host family much needed time to clean the house and rest a bit.
2. Excellent to take XueLian/Aunt for a night or two out as 'backup host family' to give the host family a relief. Contact Rita for details.
Please call Rita 401-8115 or Wei 287-0888 or email
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to volunteer, please specify days you are available or the task# listed on the schedule page. Thank you!!!
The following are some special rules Dr. Fox (the heart surgeon) specified, please pay attention when you take XueLian for an outing (Aunt Li knows these too).
1) Do not pick her up under the arm pits for 2 months.
2) Pad the child's chest under the car seat straps for 2 weeks.
3) Child may lie on tummy if she is comfortable.
4) For the next 2 weeks, do not allow the child to be around anyone who is sick. (in public places, ask people not to touch or shake hands with her)
5) Do not allow the child to climb on things for 2 months. We do not want her to fall on the chest while the bone is healing.
6) Do not allow the child to play "ROUGH" for 2 months.
Xuelian is being released from the hospital today! She is headed back to the King’s comfortable home for some more rest and recovery. She will most likely return to the hospital in the next week or so to have another surgery on her bladder problem. We will keep you posted about this, but please know that she is doing great, and happy to be released from the hospital.
Thanks!
Alison Meador
The HeartGift Foundation
** 5/13 Extra! Extra!! 號外!! 號外!!
News from Rita and Hsu Wei from the hospital: XueLian will most likely be released from the hospital tomorrow!!
Dr. Fox removed all the tubes from Xuelian this afternoon and told us a great news that Xuelian should be released from the hospital tomorrow after x-ray. Xuelian enjoyed walking around and getting all the attention. She even had her dinner at the cafeteria. She seemed to gain some of her energy back and she ate so well too. Aunt Li was in great spirit.
Rita
XueLian's heart tube was removed today. She immediately became more energetic, wanted to come down to walk. After a little stumbling, she started to walk well. Rita and Aunt took her to the cafeteria and ate some dumplings brought by Margaret today. She couldn't hold food well initially but kept want to eat. Later on she was able to eat big part of a chicken leg.
This is wonderful news!! Thank you for all your love, care and your prayers!! So far there were 30+ volunteers peformed 50+ tasks, not counting those did it w/o registering it with us. In addition, there are mountains of toys and clothes for her. Thank you volunteers, this could not have turned out so well without you.
After returing to Rita's home, the help Rita need would be some afternoon outings for XueLian. I will change the schedule to have one outing help each day for the next week. You can take XueLian out to play with your chidren, but please do not visit the host family with your children as that would add to the host family's burden. Please do not just visit unannounced either. Sign up first or call first. As XueLian is getting better and getting closer to her time to go home, we will arrange a fairwell party so everyone can see her at that time.
**5/13 Continue to improve
Little Xuelian continues to improve, and rumor has it that she will have her chest tube out by the end of the day. Her appetite is better, but she still needs more protein, so now the nurses are working on getting more protein in her diet (she likes those carbs!). She is not moving around a lot, but maybe once her chest tube comes out, she will be up for a few strolls up and down the halls of Dell Children’s.
She is in Room 214 of the Intermediate Care Unit, and was moved there yesterday.
Thanks.
Alison Meador,The HeartGift Foundation
Note from Rita:
Yesterday besides Xuelian's being transferred out of ICU and she's not eating well, there was not much going on. This morning Doctor Fox is operating on another child, he'll pull the tubes attached to Xuelian's heart afterward. Also Aunt Li called this morning and told me that Xuelian ate some Chicken leg with 大餅 in water. Finally Xuelian is able to walk around and explore in the hospital.
Note from May:
Seems the aunt needs to get out of the hospital room for a while. I am afraid she may get lost in that hospital (I got lost myself) so I stay with XueLian for a while and let her went with the nurse to heat the food in the microwave. She looked much better just after that 5 minute break. I feel sorry for herbecause I may have the cabin fever too if I stay there day and night. Pray that XueLian can get well and out of the hospital soon.
I tried to teach XueLian to say "thank you" but I was a little too perfectionism trying to ask her to learn the "th" sound between the tongue and after that she refused to do it. I learned things the hard way as usual.
**5/12 Transfer to regular room
Xuelian is in better condition and will be transferred to regular room #214 today. She is not eating enough nutrition still and that is the main challenge to recovery. Hospital stay is expected to be longer, may be another week or more
Alison's note today:
Xuelian continues to improve and the nurses think she will be moved to the IMC Unit tomorrow. She is eating a little more, which is good (!), and she looks much better. So, let’s hope that Xuelian continues to have a good day.
Alison Meador, The HeartGift Foundation
** 5/11 New Photos
XueLian is recovering nicely today, as you can see from the photos below. She ate some 大餅泡水 及 Strawberries. She sat up on the sofa for 2 hours in the morning, slept for 2 hours, then woke up and sat on the bed for 2 hours before falling to sleep again. Most of the tubes are removed, last ones will probably take another day. The cut mark on the chest is visible but the doc really did a good job as the stitches look very smooth. For those of you signed up to bring food, please consider making some chicken soup with a little chicken meat, that will help her to get more nutrition. XueLian also likes dumplings.
It is a good day but XueLian will probably stay in the ICU till she can eat more to regain strength. Doctors actually are concerned that she is eating too little and are considering feeding tubes. That would be very uncomfortable for XueLian. Please keep praying!!
** 5/11 Note from HeartGift
Xuelian continues to improve, but she is still in ICU, and the nurses are concerned because she is not eating well. She has had only a few strawberries over the past few days, and she needs to eat to help regain her strength. Otherwise, she looks good, and her breathing tube has been removed. She is in much better spirits, talking with her Aunt Li, and even cooperating with the nurses!! This morning she was sitting up in her chair! She still has her chest tube in, and her blood pressure is stable.
Thanks so much for all you do for HeartGift, and remember that Xuelian is a frail little girl so we need to keep visitors to a minimum. She will most likely remain in ICU for a few more days until they remove her chest tube, and she regains her appetite.
Alison Meador
The HeartGift Foundation
**5/10 Good progress
XueLian's breathing tube has been removed. She woke up and asked for water, but even a little water caused her to vomit. However, after more sedation and sleep in the afternoon the word from the hospital is that XueLian is doing much better at night. She can eat a little now and kept asking for food. Nurse instructed Aunt to give her one goldfish cracker every 10 minutes. She can also start to eat a small amount of strawberry smashed.
So tomorrow volunteers can bring her a small quantity of strawberry and/or pear. Her appetite is expected to improve. This is a good sign of recovery.
Please keep up with your prayers. She is getting better but not completely out of the woods yet. (the above picture is taken 5/10 afternoon)
** 5/9 Difficult day for XueLian and Aunt Li
-- It is first day XueLian is almost fully awake. It is difficult for her and Aunt Li is very nervous and need translator
support more constantly. Rita will call volunteers to coordinate timing, please be there on time.
**URGENT CALL FOR HELP!! --- ALL COVERED, thank you!!
XueLian is in the ICU recovering, mostly sedated so far. But she will start to wake up and move around with a lot of tubes in her. Aunt Li is in the room but urgently need someone that can visit and provide translation and support for:
1. Today: visit before 6:30PM or after 8PM (ICU is closed 6:30PM-8PM for shift change), bring some food for Aunt Li... this one is now filled already. Thank you CH.
2. Tomorrow and Sunday: we have volunteer to bring lunch and dinner, but we need a translator to be there at 8AM to translate when doctors are there, probably removing some tubes. (Saturday morning is taken by YN and Sunday morning by JK. we are all covered now, Thank you!!.)
Please call me 619-6974 or email
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if you can take one of these emergency slots.
Thank you very much!!
**5/8 Note from HeartGift
Xuelian rolled out of surgery yesterday afternoon around 3:30, and is now resting in ICU. She had a rough night last night, they have had trouble regulating her blood pressure (it was too low), but this is not uncommon with this type of surgery. She was stable around 6:00 am, and the nurses say she is a feisty girl. She has a good bit of swelling, and her breathing tube is still in, and will likely remain that way for the next few days.
Thanks so much to Alison and Caroline Ryan who came to the hospital yesterday morning for pre op, and also Bill Duffy of Coffee Bean and Tea Leaf, for observing her surgery. Rita King has been steady at Aunt Li’s side, and we are so thankful for her calm, comforting way.
We will keep you posted as to her progress, and in the meantime, keep sweet Xuelian in your thoughts and prayers.
Alison Meador
The HeartGift Foundation
** 5/7 11PM XueLian is doing well
She is resting peacefully. It's a long day for XueLian, Aunt Li, Rita and Heartgift workers. Rita took Aunt Li home to rest as Wei is staying in the hospital room with XueLian.
There are a number of video reports on http://austin-tv.net about XueLian. Today XueLian's cousin in China (who is Aunt Li's son) actually watched the videos and sent an email response. He cares for XueLian a lot and is glad he can track their progress online. How wonderful the technology is!
** 5/7 5:30PM Surgery is a success!!
Doctors said the operation was very successful. XueLian is in the intensive care unit now with a lot of tubes on her.
Now let's pray for her recovery!!
** 5/7 3PM Surgery is still going on!!! 手術進行中
The surgery was delayed a bit to start about 10AM this morning. So as of now the operation is still ongoing. The word is that it went well, just takes time as it is a complicated surgery. Please continue to pray for her.
**Note:
Thank you all for the gifts. They have too many toys and summer clothes. The only thing they need is some winter clothing, jackets and the like. Thank you!!! 謝謝大家的愛心
Volunteers: please email me your experience and thoughts so I can post them here! (
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)
** XueLian's photos
** Beautiful QingHai 曼妙青海
While waiting for the surgery day, enjoy the pictures of QingHai, the home province of XueLian.
Xuelian’s surgery will definitely be tomorrow morning beginning at 8:30 am. Xuelian is very calm and Xuelian’s support group is sitting down with her today, and explaining to her about her surgery tomorrow and what to expect. This is a good thing, because she continues to have tet spells, and they seem to frighten her.
Thanks so much to Wei Hsu who brought two strollers to the Kings so that Xuelian could spend time outside strolling around, rather than walking, and also for being rock solid support for Xuelian and her aunt. Thanks also to our friends for the cute new clothes that both Xuelian and Aunt Li are wearing. That is such a treat for them, and a nice diversion before surgery. We will send you and update after surgery tomorrow, and let you know how she is doing.
In the meantime, thank you so much for all your support!
Wei's report: After doctor's visit today, it is confirmed that the surgery for XueLian will be tomorrow morning. It should be done around noon. Please pray for her tomorrow morning.
XueLian had a good few days of rest. She had good appetite and is of high spirit. She was still nervous when she sees the doctors. Smart girl.
** 5/5 Note from HeartGift
Xuelian will have an appointment tomorrow morning with Dr. Wright, and it will determine whether she will have surgery on Thursday or not. Xuelian continues to be a very fragile little girl, and is having frequent tet spells, so it is a good idea to keep visitors to a minimum. After her consultation tomorrow, we will update you as to the time of her surgery, but it will most likely be first case, since she is so young.
Thanks to all of you for being so kind and attentive to Xuelian, our White Snow Lily, and we hope to have her surgery behind her, and on the road to recovery very soon.
Note from Rita: Big thanks to Wei who brought two strollers in last night when I asked her to find one.Xuelian enjoyed her ride in the stroller while aunt Li pushed her around the park and neighborhood. After all it is a beautiful day to be out.
A nice lady, Sandy, dropped a bag of clothes for Aunt Li. Around noon a young couple Mr. and Mrs. Robert Hall rented a car to drive from southern Austin to visit Xuelian. They brought Xuelian many of her favorite fruits and snacks. We had KFC for lunch because Xuelian likes chicken legs and wings so much. Later Alison Ryan came to pick Xuelian and Aunt Li to her house to play with her two sweet girls.
** 5/3 Quietly Resting
From Rita:
We took Xuelian and Aunt Li home yesterday afternoon, Xuelian was thrilled to get out of hospital. Aunt Li and I planted some flowers, Xuelian helped watering the flowers.
In the evening we went to a park, Xuelian had a lot of fun. Aunt Li was doing great.
Today we kept Xuelian home, Aunt Li showed me how to make their famous 拉麵，
Xuelian had good appetite.
** 5/2 Good News!!
XueLian's MRI results is good so she can be released today. She does have some kidney defects that may need to be treated after the heart surgery. Heart Surgery is now scheduled for 5/7.
A new visiting schedule is posted now. Please sign up if you can. Pre-operation we will limit visitors, mainly drop by to give XueLian some spirit boost. At the hospital we will need some food and visitation support.
** 5/1 note from HeartGift coordinator
Hello Everyone,
I wanted to touch base with all of you to say thank you very much for all that you are doing for Xuelian and Aunt Li. Xuelian is going through a difficult time and has made it through all of it because of you. She is a very special little girl because she is surrounded by a group that truly cares for her and her Aunt. As you are aware, Xuelian is having a MRI today and based on the results, she may have an additional surgery for the unexpected kidney issues. She probably will be released from the hospital on Saturday and to make sure she stays healthy and does not have a relapse, she will be returning to the Kings home until the day of her heart surgery which right now is scheduled for Thursday, May 7th at 7:30. It is wonderful that we have volunteers that bring her food and stay with them during the night. At this point, there really is no need for someone to stay through the night as this is the time that Xuelian and her Aunt need the rest. It is good for the Aunt to learn to take care of Xuelian because she will have a long road ahead of her and don't want her to think that it is expected that someone be with her at all times, this is why she is here. This is a good time for her to prepare for when she will be in the ICU with Xuelian. After surgery, the most important thing is that when Xuelian wakes up, she will want to see her Aunt's face, if she is not there this may upset her and we don't want that to happen. Hospital rules for the PICU are that no more than 3 visitors at a time. No one will be allowed to stay through the night with the Aunt while in the ICU and food should not be brought in until Xuelian is ready to eat because for atleast the first 24 hours after surgery she will not want to eat and the smell of the food may make her sick. Food can be brought in for the Aunt but she will need to eat it in the waiting room located outside of the PICU, but once Xuelian is able to eat, then she will be able to eat in the room. Xuelian is a very fragile child, so she will get worse before she gets better. Thank you again for all of your support and if you should have any questions, please feel free to let me know.
Sonya Keeling Patient Coordinator The HeartGift Foundation 512-658-3306
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"Xuelian has a urinary tract infection. she is being treated with antibiotics, she is doing better.
Imaging of her urinary tract is abnormal. The tubes draining from the kidneys to her bladder are abnormally large. Also her bladder is thick. The pictures also show abnormalities in her vertebral bones. When we see these abnormalities in addition to heart abnormalities we worry that the child may have a nerve problem.
Other studies may be necessary at a later time."
XueLian is going to be sedated this morning to go through MRI, then it will take time to recover. How will she be treated and how long will she stay in the hospital will depend on the results. It is likely that she needs more treatment or surgery after her heart surgery. She really needs your prayers.
New schedule for volunteer has been posted. Please consider signing up for some tasks. As XueLian's treatment will take longer, we are trying to schedule volunteers just for the bare minimum needed. There will not be full coverage of translators between volunteer visits. Also these scheduling are still subject to change with Doctors decisions, sorry for the inconvenience.
** 4/30 Noon update
XueLian is having pretty good appetite and good spirit this morning. She likes the onion cake (大餅) made by Pastor Zhang of Rock church. Some pictures will be posted soon. Aunt Li is doing better too although she is still not that strong and has to walk slowly.
However the news is not all good. XueLian may have some kidney problems so more testing is to be done (see Judy's more medically accurate report below). Surgery is still tentatively scheduled 5/7. We need to have volunteers signed up starting tomorrow when they are still in hospital, plus volunteers after surgery. A new schedule is posted now, please sign up!!
(Judy's report)
Bai Xue Lian has Vesicoureteral Reflux (VUR)--flow of urine from the bladder to the kidneys. This may be associated with urinary tract infection, or abnormal kidneys. Vertebral anomalies are also noticed from radiology report. MRI imaging will be performed tomorrow to see if there are spinal abnormalities, and a Urology consult is scheduled for tomorrow as well. She will remain in the hospital until test results are evaluated
** 4/30 AM update
Xuelian is doing better but we don't know whether she will be released yet. Her surgery date is set to 5/7, one week from now. So we will be asking you to signup for hospital visits and after surgery visits soon. Thank you and keep up your prayers for them!
**4/30 note from HeartGift
Needless to say, the last few days have been a little stressful on Xuelian and Aunt Li, but the good news is her fever has finally broken and she appears to be responding to the antibiotics that are treating her UTI. Her ultrasound revealed normal kidney function, however there may be a little reflux from her kidneys, so a urologist will take a look at that today and she will remain in the hospital.
We are so thankful to Rita King, who Xuelian affectionately calls “grandmother,” and also Wei Hsu who has helped immensely during this unexpected trip to the hospital, even spending the night there so Aunt Li can have some rest. Aida, from the Chinese Agape Foundation personally came to visit Xuelian and Li, and will return when Xuelian has her surgery, and remain with her during her recovery in ICU.
Thanks! We will keep you posted.
Alison Meador
The HeartGift Foundation
**4/29 Evening update (Priscilla)
The girl is very cute and outgoing, she loves to play! But the aunt is very tired and anxious, I think that the volunteers should give her time to rest. I forced her to sleep and she refused at the beginning. Finally, she fell asleep for 45min. For me, she looks like she is weaker than the girl.
We played play-doh and watched animal planet together. We also drew and colored pictures. She told me she likes to eat “chao mei” and the aunt tried to translate to me. I thought she likes “chao mian”(stir-fried noodle) instead. Actually she likes strawberry (I guess). May be someone can find out. She was very joyful and it didn’t seem like she was at all affected by her illness. She loved to giggle, and I enjoyed her company for 3 hours.
XueLian is stablized now but doctors want to keep her at least to tomorrow, may be Friday.
If you have time to sign up for the following, email me please:
-- Friday: breakfast/vist or lunch/visit or dinner/visit
All other volunteering schedule are cancelled until we redo them after the surgery date is set. Thank you for you care and your patience. Please continue to pray for them.
**4/28 10pm update
XueLian and her aunt are both doing better. If Xuelian's fever does not come back tonight, she will be released tomorrow. Aunt Li is still weak but will stay in the hospital tonight with another sister that volunteered to accompany them overnight. Please pray for both of them.
For XueLian's protection, we decided not to arrange visitors before the surgery. She will actually be staying with a backup host family and rest thouroughly to get ready. The host family will get a break to rest a bit too. As soon as new surgery schedule is known, a new signup sheet will be posted here to schedule volunteers. Keep watching this blog and your email for news. Thank you for all your love and concern for little XueLian.
**4/28 afternoon update
HaiPo's report from hospital:
Today I stayed with Xuelian for about 3 to 4 hours and particularly got a chance to stay with her one one one for an hour. I am not looking kind to her and she is pretty fussy at first. We went to a children's playroom nearby and finally we got along very well. She is really a cute and lovely girl when you watch her closer. She is pretty exicited about almost every toy she gets. She played even after we got back to the patient room. Finally she got tired and fall into sleep when I was checking my voicemail. Quite a lot of food leftovers. I think some fresh fruits like Asian pears or banana will be helpful. Xuelian really eats very minimum food. She only ate half a pear and a couple of Gold Fish during my stay. Aunt Li is too much anxious and now gets trouble in her mobility. But sometimes Aunt is needed to translate Xuelian's need. In the case Aunt is not nearby and Xuelian's dialect is not able to be understanded, recommend calling Aunt on the phone as the best way.Particularly when Xuelian is fussy, Aunt and Rita are probally her only solution. At this moment, playing with her and distract her attention are better than using food. Hugging her closely is another solution.
(NOTE: Rita took Aunt Li back to hospital in the afternoon but aunt is very weak still)
** 4/28 noon update
Report from the hospital:
1. Xuelian's fever came back early in the morning, sibsides soon after. But looks like she won't be released today.
2. Aunt Li can barely walk last night and was taken back to Rita's home to sleep. She is still weak today but expected to be back in the hospital in the afternoon. Xuelian kept crying looking for Aunt. Situation is difficult for everyone. Need your continued prayer please!
3. Wei has stayed two nights in the hospital with XueLian. Thankfully we have another volunteer taking over tonight.
**4/28 Note from HeartGift
Xuelian has finally been diagnosed with urinary tract infection, which is good news, because it is easily treatable, and she should be on the mend soon! She still has a fever, so she won’t be released from the hospital for at least one more day. The bad news is that the hospital has asked that we limit visitors until she feels better.
She should be home by the weekend, and her surgery will most likely be next week. Aunt Li has really had a hard time of all this, probably because she is not eating much or sleeping very well, and she understands so little about American medicine and hospitals. So, Rita and Moon took her home last night to give her some relief for a while. The Chinese community of support has been wonderful through all this, and there has always been someone there with little Xuelian.
As soon as Xuelian is released from the hospital, we will update you.
Report from the hospital: XueLian is doing better. But the aunt of XueLian is having difficulties. She was so nervus in the hospital that he barely slept at all since arriving at the emergency room 36 hours ago. She had an anxiety attack tonight and had to be treated. Please pray for her as well as pray for XueLian.
** 4/27 2:30pm XueLian got bladder infection
Judy reported from the hospital: doctors determined that it is bladder infection. That is a relief as bladder infection with right treatment can be cured in 24 hours or so. Continue with your prayers please.
**4/27 noon XueLian is better
Report from hospital is that XueLian is getting better. If her fever subsides she may be released as early as tomorrow. Let pray for the quick recovery. The likely surgery date is now mid of next week (around 5/6).
XueLian eat half a bun (包子) and a pear (新疆梨) and is in good spirit. We are signing up volunteers for hospital visits for the next few days now. Please email availability to
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.
** 4/27 XueLian still has fever
Report from the hospital: XueLian still has a fever this morning. Doctors continue to look for source of the problem.
Other than the fever, Xuelian vometed yeterday and had hard time drinking water. She slept in the day time and awake all night talking to the aunt. (I think their jet lag kicks in now). Our volunteer Wei stayed with them as they are both very nervous about the new environment. Wei reported that Xuelian said "Doctors are giving me shoots here, but no one can give my parents shoots, parents should be here to get shoots"
XueLian's hospital stay for this may be short or long, so we are lining up volunteers just in case. Please let me know your availablility and keep flexible.
Keep XueLian in your prayers!!
**4/26 XueLian is hospitalized
We need all your urgent prayers. XueLian has been admitted with a high fever, diagnozed as having an infection but not sure where yet. She will stay in the hospital tonight.
It is pretty sure that her surgery schedule of 4/28 will be moved to a later date, to be determined after her infection is gone. All the volunteer scheduling will be changed, please check this blog and your email regularly for the latest arrangements.
Right now we need people to visit them and accompany them in the hospital. The aunt is very scared as she does not speak a word of English. Right now we need volunteers to accompany XueLian and her aunt in the hospital. Please email me your availability, a typical visit is bringing one meal for the aunt (breakfast, lunch or dinner) and accompany her for 2-3 hours. Overnight shift by a lady is very needed too. I will arrange this special case assignments with your availability. (email or call please!!)
Thank you and do pray for XueLian!!
**4/26 XueLian has a fever
This morning XueLian has a fever above 39F, so the outing today is cancelled. After Tylenol temp is reduced and she is sleeping in the afternoon. Please pray for her health and her operation coming Tuesday morning. That's the best way to support her right now. I will keep you updated.
Mrs. King told me that the gifts for XueLian is overflowing. THANK YOU ALL!! They have limited luggage space so please, no more gifts...including clothing, toy, money. Please stop all gifts until further notice. This is not only for space problem, it is also for their safty as they will need to take a 3 day train ride back to QingHai. A lady holding a 2 year old can't take care of her luggages well and the train ride is known to be less than safe.
昨天在戴爾鑽石棒球場慶祝小雪蓮的歡迎會，場面溫馨感人，棒球場的老闆Reese Ryan 看到雪蓮和阿姨下飛機的影音，他也很感動，有許多美國朋友，都知道小雪蓮的故事，他們每天上雪蓮的部落格看最新的報導。昨天的影音已在網路上www.austin-tv.net
The wellcoming party for XueLian was held yesterday at Dell Diamond. It was a very warm and touching event. Dell Diamond owner Reese Ryan said he watched the video coverage of Xuelian's arrival and was very touched. Many at the event know about XianLian's story and her operations, they do watch the blog to see daily happenings about XueLiang. Video of the Dell Diamond party is now on http://austin-tv.net
**4/26 YouQin's report for 4/25
We had a great time with Xuelian and her aunt. Xuelian is a happy and cute little girl. She liked a wooden pony at my home very much and she ride on it like non-stop. She called me sister although I already have an 18 months boy myself. We showed her my son's pictures because he is now in China with my parents and Xuelian was very interested in those. She called him little brother and little baby. We made a phone call to aunt Li's home where Xuelian's mom lives right now. Aunt Li couldn’t stop crying when she talked to her sister. I know it’s been too much for her and Xuelian. She has a lot to tell the family what happened and will happen. Then, Xuelian talked to her mom. I bet the mom must cry on the other side of the phone too. Xuelian also showed great interests on the cars. I let her sit on the driver’s seat and she played with the wheel and all different kinds of buttons. We asked her what do you want to do after you grow up and she answered driving a car, which made us all laugh.
After lunch, she was tired and sleepy but she didn't want to go to bed. On the way back to Mrs. King's house, she fell asleep quickly in my car.
It seems Xuelian does not know much about how serious her disease is. She is happy and excited about everything she sees. She is a strong little girl with positive attitude. I really enjoyed the time with her and hope everything will go well with her.
Gang and Jane visited XueLian this afternoon and the result is great. XueLian is a lovely, cute and smart girl. She and Jane enjoyed their fun time (see the attached photos).
Here are a few notes for your information:
1. According to Guang, they have received some Summer clothes. However, most of them are too big. 2T or 3T will work better for XueLian.
2. It will be nice if they have a couple of phone cards as it looks they want to contact their family in China periodically.
3. It seems XueLian has not really got used to the fancy food yet. Instead, ske likes to eat the noodle with sour Chinese cabbage at least for now.
XueLian had 2 more episodes this morning.The second one happened when we are about to leave for her appointments and she ran upstairs to look for aunt Li.Aunt Li held her and she became better in a few minutes.Aunt Li was holding her whenever we need to walk for a longer distance between appointments today. (Note: Dell Children’s Hospital doesn’t have elevator at least on the side of building we were visiting today.This is a design oversight.)XueLian’s heart condition is called “tetralogy of fallot” (in case you would like to find out more info in google).The doctor said if the episode happens again the care giver should stay calm and ask XueLian to squat in the knee-chest position.Drinking more water regularly may help to reduce the frequency of episodes.
Today XuenLian had the chest X-ray, blood draw and visited the anesthesiologist.
---Chest X-ray:For this, she had to sit on a machine with 2 hands holding up straight and 2 legs fit into 2 holes.She was scared when the technician asked her to sit in.We called it” motorcycle-ride” trying to alleviate her fear.But during to picture taken, both aunt Li and I had to step out for a brief time to avoid radiation.We can hear her crying from outside.She was fine immediately when we went back to the room again.After taking the X-ray, the technician put a cute sticker on her left hand.I told her this is to recognize her as a brave girl.She asked whether she can have one on the right hand also and she did get a second one.On her way to the other part of the hospital, she was raising her hands and showing her stickers to everyone she encountered.It was very sweet and funny.
---Blood Draw: The blood draw is for obtaining some information necessary for her surgery.This includes blood typing, red blood cell count, white blood count, hemoglobin, glucose and blood clotting easiness.Apparently, XueLian had some unpleasant experience with blood drawing in China so she was frightened.The nurses applied certain “numb cream” about 30 minutes prior to the blood draw and try to play with her to divert her attention during her waiting.Believe it or not, she did not cry during her blood draw.For this, she got a stuff animal for her good behavior.
---Visited the Anesthesiologist:The anesthesiologist simply explain what will happen during her surgery on next Tuesday.I noticed aunt Li was a little concern about the safety of anesthesia.Let’s pray for the surgery on Tuesday.
Misc. notes:
--- XueLian learned how to say “thank you” and “bye-bye” in English today.Try to remind her and encourage her as you work with her in the coming days.
--- XueLian has enough stuff animals now.She and aunt Li seem to need some clothes.(They are very poor and have few clothes.)Used clothes at good condition are fine to give them.XueLian is significantly smaller than a regular 4 year old.According to Rita used 3 year old girls’ clothes (for spring and summer) is optimal.
--- For people who plan to bring food to them, it’s better to check what kind of food XueLian and aunt Li will eat.So it won’t go to waste.
**Mrs. King has a problem!!
Rita said her biggest problem now is how to coax XueLian to eat. XueLian does not like to try things she did not eat before. She only likes eggs and bananas so far. Ideas from mothers with 4yr olds?
** (4/24) Amazing HeartGift and Chinese Agape
Sonya from HeartGift told me HeartGift has sponsored 80+ children for heart surgery since they started the organization 9 years ago. Now there are 12 cases each year, with 3 coming from China in 2009. XueLian is the first one of the three. HeartGift organizes hospitals, doctors and sponsoring corporations or individuals to support all the expenses. HeartGift only pays a small fixed fee to the hospital then hospitals and doctors donate their resources and time. In XueLian's case, Chinese Agape Foundation pays for the flight in China, a donor (Nolan Ryan!!) pays for the flight to and inside the US. The local community provides host family and other support. So many loving heart covering every step of Xuelian's way. Very touching very amazing indeed.
** (4/23) A scary moment 4/22
4/22 featured the most beautiful Spring weather to welcome XueLian to Austin. Rita took XueLian and Aunt Li to the nearby park for a walk. XueLian was very excited to see the nice scenary. She ran on the trail, laughed, talked. Then suddenly, she stopped and scooped down. With trembling limbs, her lips started to turn blue. Aunt Li held her up, tried to talk to her. Then gradually she got better. After consulted doctors it was determined that this is a typical attach episode when a child has her heart condition. As she got back to normal, it was not necessary to go to doctors as there are doctor visits later in the day already.
Aunt Li said XueLian did not have any attacks like this one before. May be it’s the long distant flight plus the over excitement of a new environment. Thankfully this was just a scare but it reminded us that she is sick and the operation is so necessary for her.
** (4/23) Doctor Visits 4/22
Dentist: It was determined that XueLian’s teeth are in good shape. There is one decay between the teeth that may need some work. But it does not prevent the heart surgery. The doctor showed the x-ray to XueLian that has her baby teeth as well as the future permanent teeth underneath. Not sure XueLian understood what’s going on there, but I am very impressed with the x-ray.
Pediatrician: Within a few seconds of listening to XueLian’s heart, the doctor said “it’s so obvious! She must never been seen by a doctor before last September. Any doctor can tell this heart problem.
Cardiologist: XueLian has a hole in her heart artery (sorry, that’s the best I can describe it). One side of her heart is already enlarged as a result. She does not have enough bloodflow through the heart. If left untreated, she will not live another 10 years. The doctor also said that the surgery is complicated, but not dangerous. There are 95% success rate with this type of surgery. She will have a real ‘open heart’ surgery but children normally recover fast. Doctor said she will noticeably be a lot more energetic as the bloodflow will double.
** (4/23) XueLian’s story
XueLian’s aunt told us the stories:
XueLian’s adoption: Aunt Li’s sister and her husband are older (50s now, very old per Aunt Li and the country side standard, I reserve my opinion on that!) couples that do not have any children. One snowy night the husband came home around midnight and saw a wooden box in the woods next to the road. He opened it up, a very small baby lies inside. Being poor farmers, the husband and wife struggled and debated on whether to adopt a girl. They decided to adopt the little baby and named her snow lily. With their surname, it became While Snow Lily. They are very poor, lives in a leaking hut that is extremely cold in the winter. For some winters they would send XueLian to stay with Aunt Li 15 miles away in a house with fire to keep warm.
XueLian’s heart problem: XueLian often got sick since she was little. She got short of breath easily and is very petite for her age (on 4/22 she was only 26 lbs and 37 inches tall). But the poor farming community does not have much access to medical facilities. It was last September when XueLian had a severe illness when the parents determined that the shots of the local clinics would not work. They called Aunt Li and beg her to save XueLian. Aunt Li gathered her family savings and borrowed money to take XueLian to the county hospital. It was there that doctors said “she has a complicated heart disease, we can’t handle it here”. More trouble with finances and loans, then finally Aunt Li took Xuelian on a long journey to Xi Ning Hospitals. Doctors there determined that surgery would be the only option but they can’t performed it either. Aunt Li borrowed more money and took XueLian on a 4 day train ride to Beijing to seek operations. However the surgery was way more expensive than she thought and Aunt Li has exhausted all her own and her relatives’ means. Fortunately a friend heard about China Agape (this part of the story is fuzzy) and applied to HeartGift. That is how they got to Austin, 7 months since XueLian’s congenital heart disease was diagnosed.
** (4/23) Tidbits from 4/22
-After a few minutes of quiet observations of the new people she met, XueLian would become very friendly. She said to Sonya (HeartGift coordinator) “you are very pretty”, then gave Sonya a big kiss on the cheek. After a while she decided to include me also and said “grandpa you are pretty too”, but no kiss on the cheek! Aunt Li told me XueLian gladly called everyone ‘aunt’ or ‘uncle’ in the airport, but when it came to a pretty reporter she said “she is not an aunt, she is a sister”. Cool diplomat in the making.
-At dentist visit, XueLian showed her fear of ‘pulling teeth’. When the nurse came to look at her teeth, she put her hands on the mouth and said “my teeth are good! It’s my mother that has bad teeth!” Good try, XueLian!
** (4/23) Update from HeartGift
Well, Xuelian continues to be a model patient, well mannered and pleasant, a happy child. She has one small cavity that can be treated after surgery, is having her preop work done today, and will be the first case on Tuesday morning, with surgery starting at 7:30 am.
As we spend more time with Xuelian and her aunt, Li, we continue to learn more about her incredible story. Since she is a girl, she was abandoned by her birthmother, and left in the snowy woods in the China countryside, hence her name Xuelian, which means White Lily in Chinese. Her adoptive father literally found her as he was walking through the woods, rescued her, and gave her her name.
The journey to Austin took 17 days from her home province of QingHai in northern China. After riding the bus for 5 hours to SiNing, they then boarded a train for a four day trip to Beijing. There they waited for their visas, and eventually flew from ShangHai to Chicago to Austin. Neither Xuelian or Li speak a word of English, nor have they traveled very far from home. Her parents have remained behind in China, as they need to work.
Thanks so much to the Austin Chinese community and the King family who have so warmly embraced Xuelian and Li, and given them an enormous amount of support over the last few days. Also big thanks to Reese and Alison Ryan, who are hosting a welcome party for Xuelian at the Dell Diamond on Saturday night, and our own Dr. Kenneth Fox will throw out the first pitch!
I have attached a cute picture of Xuelian for you to enjoy.
Alison Meador
The HeartGift Foundation
1010 W. 40th St.
Austin, Texas 78756
512.637.5105 (office)
512.656.3715 (office cell)
** (4/23) Note from Host Family (Rita King)
Thank you so much for your compassion and support to Xuelian and her aunt. I have so many nice people offering donations on clothes, shoes and toys for Xuelian and her aunt(no toys for her). Sonya keeling, the Program Coordinator, told me yesterday that we can't take any more stuffed toys, Xuelian has more than ten in one day. Keep in mind even they are allowed to bring four suitcases on the plane but they have to take a 36hr train ride and then bus ride back to their village after they arrive China. For the aunt sake, the lesser luggage for her to carry is the better, besides she has to carry Xuelian while Xuelian feels fatigue. Thank you for your understanding.
** 4/22 First day went well, report will be up soon
Xuelian and her aunt arrived safely last night and she is a precious little girl. Her aunt burst into tears when she was greeted by HeartGift at the airport. It was such a happy and sad moment, all in one, to see the relief come over her as she realized she had finally made it to the end of her journey, and could finally relax in the company of strangers.
They arrived with literally a plastic sack carrying all their belongings. Someone gave Xuelian a Rubiks cube-like puzzle along the way, and it is like a treasure to her, and it might very well be her first toy. They were up bright and early this morning, and have appointments with the dentist, pediatrician and cardiologist before they head back to the King’s house later this afternoon.
As I mentioned before, there was a Chinese film crew that greeted her at the airport, and I have attached a link to their footage. It is all in Chinese, but it is pretty profound to watch. http://www.austin-tv.net/
Stay tuned, and thanks for all you do for HeartGift.
奧斯丁光鹽社代心臟禮物基金會向華人社區尋求支援，希望在雪蓮養病的兩個月期間，可參與醫院陪伴、飲食料理、語言翻譯、交通協助、捐贈衣物和玩具的愛心人士，主動和光鹽社聯繫512-619-6974,
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，或和金太太聯絡512-401-8115。
