Yuan leaves the hospital

Little Yuan has been discharged from the hospital after her big surgery during the cleft mission. She was given many gifts by the wonderful volunteers in Shanghai, and everyone there was sad to see her go. They all hope they will see her again someday, possibly when she has her second surgery.

We are still waiting on the pathology report on what type of tumor she has. During this week of thanks, we are very grateful for the outpouring of support and love shown to this beautiful little girl. We give thanks for all of the people who have supported our medical program, which allows us to touch the lives of so many children in China who will be in our hearts forever.

Surgery Mission - Day One

Welcome from Sunny Shanghai

Beautiful babies and children everywhere! Not only was the sun shining, but the smiles of the children literally glowed inside. Today, a small group arrived at SCMC to get set up for the surgeries that will start tomorrow. Charts were created, pre surgery photos were taken, exams were done, and introductions were made.

We were so fortunate to have Dr. Bonnie Straka, a dermatologist with us today. Even though she is on an adoption trip, she is able to spend a few days with us in Shanghai. She saw some very adorable children with skin issues ranging from eczema, ichthyosis, to three very rare conditions – XP (Xeroderma Pigmentosum) a very rare pigment disease (1 in 1,000,000), a very rare form of Sturge Weber Syndrome, and a nevus/tumor condition. Each of these children touched us. Dr. Straka spent so much time with the caregivers of each of these children, explaining how to best care for the child and providing treatment options.

The little boy with XP, Yong, was so very solemn and so adorable in his hat. His caregiver was so good with him, holding and talking softly to him. He stood so very still for his exam, so rare for a two year old. I was so touched when I put out my arms to hold him and he came to me to be cuddled.

Feng Feng, the eight year old child with what Dr. Straka believes is a very rare form of Sturge Weber syndrome was enthralled with a magna doodle. His form of the disease is affecting his eyes, causing some nystagmus. This didn’t stop him from carefully copying the circles and creating other doodles. After just one time, he learned how to erase the board and put the pen in its spot. He was also very ticklish and had the most beautiful smile. It was easy to see how he has touched so many. We learned that at the orphanage, he is so good helping the caregivers with the younger children. On Monday, we are arranging for him to have an EEG and an ophthalmology exam.

Yuan Yuan, the little six year old girl with the facial tumor and nevus, was just so sweet. She loved entertaining everyone. When Wendy, the Assistant Trips Coordinator, went into her room today, she started yelling excitedly, trying to call her over. Wendy went over to see her and Yuan Yuan wanted to share her cookie. Wendy tried to tell her that she didn’t care for any, but Yuan Yuan wouldn’t take no for an answer. Being a great sport, Wendy took a bite and Yuan Yuan just beamed. Later, Wendy went and gave her some beads to wear and she chose three strands. She enjoyed taking them on and off. When Wendy tried to give her a cute little bunny beanie baby, she took it, looked at it, tapped it on the feet, gave it back, and then said something to Tingting. Everybody around laughed because she had said that she didn’t want it because it didn’t have shoes. When all of the doctors went into examine her, she went up to every single person saying “Ni Hao” and shaking their hand. Personality is her middle name. She will be having surgery on Monday to remove her upper tumor. Her surgery is planned and will take quite some coordination. Dr. Buckmiller, Dr. Straka, and Dr. Bao will be working together, each with an important part. This surgery will take between 3-4 hours and will hopefully give her a new forehead.

In the afternoon, Dr. Wu, the Vice Director of the hospital, gave us a behind the scenes tour of the hospital, including a stop in the NICU (Neonatal Intensive Care Unit), PICU (Pediatric Intensive Care Unit) and CICU (Cardiac Intensive Care Unit). Even more fun was that we had babies in both the NICU and PICU. The premature twins that are 8 days old and arrive 2 days ago were so amazingly small. Both babies were about 2 pounds each and were doing so well for their size. They have a lot of growing to do before they can leave this unit, but they are just so adorable. I am just so glad that we are able to help these baby sisters whose name when put together means “Rainbow”. We have absolutely no funding for these sweet little girls, but we are moving forward in saving them on faith.

In the PICU, we have another newborn baby girl who is recovering from emergency anal atresia who looks great. The doctors have told us that she has gained so much weight and is doing well. I was so impressed by their units and the number of babies that they are able to care for. How fun it was to be in this very special area.

We had so much fun with the babies. They all had the cutest personalities and many have already been given nicknames – there is the noodle girl, the Buddha baby, the pink girl, and Giggles (boy can this baby belly laugh and laugh and laugh – it is VERY infectious).

The surgical team from Arkansas Children’s Hospital arrived later in the day. No sooner had they gone through customs and checked into their hotel rooms, than they were whisked off to the hospital to see the children. They examined each child that will have surgery on days one and two. So far, every child is healthy and will have their surgery. They discussed a few of the more difficult cases and made plans for how the week will be organized.

After the exams, we were whisked off to a very trendy Moroccan restaurant for a dinner hosted by the Shanghai LWB group. The enthusiasm and the amount of people willing to bend over backwards to help has been absolutely amazing. Everyone who traveled from the US was met and delivered to the hotel by a friendly driver, nametags and gift bags with treats were left, a snack room is fully stocked at the hospital, and friendly and willing volunteers arrive all the time waiting to do anything that is needed. Did I tell you that there are about 60 of these wonderful volunteers? – Amazing!

Tomorrow we will have a busy day with one bilateral repair, three unilateral repairs – two with ear tubes too, a child who will have a hemangioma removed from her nose, and exams of four children who have hemangiomas. I can’t wait to share our surgery successes and the new look each of these children will share. Stay tuned!

Karen Maunu,

Medical Director
Love Without Boundaries

www.lovewithoutboundaries.com

My High Tech Buddy

Being involved in helping orphans for more than 4 years, I'd never pictured a 15-month old baby would actually try to talk to me with a headset and webcam over the internet!!

This happened! Chloe is this 15-month old baby girl who recently left Shanghai Children's Medical Center after receiving her anal atresia surgery. She has become such good friends with me. We entertained each other every day at the hospital, we toured the famous Shanghai bund together, she learned some new words from me, we actually had a girls' sleepover one night at my place too where she put her feet on my face the whole night while sleeping comfortably... Also at my home, I showed her my webcam and she got her first taste of high-tech. I had to laugh so hard when she picked up the remote without being taught and started to talk to the remote, like she knew it was a webcam conference call.. haha

It was very hard to say goodbye to my smart and funny buddy upon her discharge, but she brought me such a pleasant and surprising evening from her foster mom's home two days after she left. Some stranger added me on my internet messenger. After adding the contact, this familiar face popped up, the only thing I didn't quite recognize was the big headset on her head. I had to shed tears and yet laughing to realize that's my little silly buddy! Soon following the image, I heard a clear and familiar voice screaming out "ayi, mama", then all you saw was Chloe waving and throwing kisses on the cam, jumping on and off the foster mom's lap. I didn't know how to respond to that as this was a whole brand new way of communication, I'd never had it with any other orphaned child before. I laughed with tears, cried with laughter! But Chloe was so kind to me and didn't wonder why I behaved differently, she just went on and showed all the tricks she learned from the hospital *LOL*

I am so thankful to her Chinese foster mother who took such good care of her during her hospital stay and allowed her to "mess up" and tried out her son's high-tech gears. And I can't be prouder of my high-tech baby buddy!!

Tingting

PS. Sorry picture quality is not very good as the webcam bandwidth is not great.

A Little Attention

Chloe is a little girl who has anal atresia. She has had two stages of her anal atresia surgery and has just had some additional reconstruction. This child charms everyone she meets and just LOVES attention.

She has learned how to get attention by doing all kinds of tricks. Dr Yan, the chief surgeon’s assistant, came in to check on the babies. The group, including Dr. Yan, our facilitator Tingting, and other volunteers, went over to check on the baby in the bed next to Chloe, leaving Chloe alone. She decided she didn't like that one little bit, so she started a loud scream while moving her head up and down with a "mean" smile. She certainly managed to get everyone’s attention, including Dr Yan's. This reminded Dr Yan that he had not examined her yet, so the whole group moved to her instead. When Dr. Yan began to lift up her blanket, Chloe started to realize that she had probably done the wrong thing in bringing attention to herself. She then started to fake cry. When she realized Dr Yan was seriously going to examine her surgical area, she cried with real tears and began talking up a storm in "baby talk", which sounded like she was saying she didn't REALLY mean to get Dr. Yan's attention.

Dr. Wu, the chief surgeon, came in an hour later. The group was all still there playing with the babies. They all started crowding around the baby in the bed next to Chloe’s again and once again, Chloe decided SHE wanted the attention so she began to yell again. When Dr. Wu looked back at her, she suddenly remembered that perhaps she didn't want to come to the attention of any doctor in a white coat and she got quiet REALLy quickly. Everyone got a good laugh over how smart she was, and they have reported that she has now moved on to tearing up cartoon books instead of trying to get attention from any doctor.

Cute as a Button

There is a little girl we have been helping for several months who had a complex spinal tumor. Her name is "Naomi", and she first came to Shanghai Children's during the UCLA medical mission, where she proceeded to charm the socks off of everyone, including the neurosurgeon.

Naomi has returned to Shanghai for the second part of her surgery, and once again the hospital ward is buzzing with stories of her cuteness. One of our friends visited her today and wrote these words which made us smile:

"I saw Naomi for the first time. She is so cute. Everybody in the ward loves her, and I am no exception. "

Isn't that great? He also shared with us that Naomi speaks in long, long sentences of her own language and using her own grammar. She just loves to chat! In fact, she especially loves to talk on anyone's cell phone who is near, so of course she had to try out his.

We are so happy to report that her second surgery went very well, and we know she will now have a great chance at adoption.

Hope her future parents-to-be have a good calling plan! I think they are going to need it. :-)

Shanghai Surgeries - Wednesday

Things are going so well here. Today has been a bit quiet - I think it is because most of the kids are not crying and are sleeping.

Baby Yuan from Henan came out safe and calm - she is the one who's so tiny and we were so worried. She cried a bit when the nurses tried to position her, but otherwise she's fine laying there enjoying the oxygen supply. When she came out of the OR, her caregivers were all worried and came up to me to tell me some people wanted to take baby Yuan away. They were worried about how they could go back and report to the director that the baby was gone. Of course that got me worried too so I had to rush into the room to ask who would want to take our baby away. It turned out it was our volunteers - so falling in love with this little girl and they showed so much desire to just take her home immediately. Of course they understood they couldn't just "kidnap" her.. but the caregivers had not understood and took it serious. When that was clear, every one, including the nurses were having a good laugh.

Liu came out crying quite a bit but definitely talking! She was trying to tell it hurt, she needed to go to the bathroom, she wanted to eat, she wanted the ayi to wipe her forehead, etc.. Her hand was hurting from the IV and she was so in tears.. I told her to try to get some sleep and by the time she woke up, she could eat and it wouldn't hurt as much. She actually believed me and I could tell she was really trying hard to close her eyes and trying really hard to stop crying, although big drops of tears still came down on her cheeks.. you still see how hard she tried to hold her crying and tried to sleep. Oh.. that moment.. It broke my heart knowing the pain she was bearing, and yet my heart went out for her knowing how much she was trying to follow what I told her.

Tiantian cried a bit too but she quickly fell asleep. Her caregiver and her foster mom used to be so worried about this surgery as they thought the risk of damaging her nerves would be so big and they were so concerned that Tiantian's legs wouldn't move after surgery. So when I went to check on Tiantian, her caregiver was all excited showing me how Tiantian's legs could respond to her touch.

Ai's surgery took a long time and his foster mom has been so restless wondering why it took so long. She was in tears waiting for him to come out. She told me Ai was so scared last night and cried a lot.. She was hugging him all night to give him the secure feeling. Ai came out sleeping soundly - by the time I left, he was still sleeping. His foster mom was still sitting by him waiting for him to wake up, still with tears in her eyes.

Kids who received surgeries on Monday seemed to be so much better today. Can you believe it, Naomi was not crying much anymore! She's ok with laying on her tummy now and she even smiled, laughed and played peekaboo with us. Her ayi also said she finally got some good sleep last night. Jacob has no more fever and was making noise like "singing".. I think he was also in a good mood. Wendy (the older one) still has a low fever but she's doing fine and she told me she felt so much better today. Both Heather and Han are doing great too. Dr Bao took me with him when he changed the dressing for their scars.. I got to see how flat Heather's neck is now and how flat Han's back is now.. amazing!! They both had huge lumps before.

Kids who had surgeries from yesterday seemed to be doing ok too, except little Wendy has had a fever and has been crying quite a bit. Her foster mom and orphanage director both had worrying faces and they tried everything they could to calm her. They helped her change position so she could feel more comfortable and they caressed her arms, massaged her head.. By the time I left, she finally fell asleep. Hou is doing great - he didn't cry at all. He laid there and talked a lot and even tried to make people laugh - can you believe that?? What a personality he has! Oh, and he asked me how the little girl Yuan (his little sister)'s surgery was going. What a caring "brother". Jasmine's tumor was a small one on the back of her head.. her recovery is a bit easier compared to others.. she could sit up already. Lily was enjoying being held by volunteers the whole afternoon - she was sleeping so well in volunteers' arms. Taylor - that handsome man! He was given some new clothes from our volunteers and his caregiver picked a very nice shirt and put it on him - he turned to such a wonderful looking gentleman with that shirt - and guess what, he didn't seem to be in pain as he was in this silly sweet smile most of the time. We were joking so much that he's the kind of boy every girl would want now. We teased Taylor and baby Jiao saying they made such great looking couple. Taylor's caregiver has alredy started calling Jiao daughter-in-law.. that really cracked everyone up!

Tomorrow's surgeries are Baby You, Benjamin (very complicated surgery), Carrie and a small surgery for Lei to find out if he has CP or hydrocephalus.

The American doctors were soooo impressed by the Chinese doctors' skills here. Dr Lazareff said the anesthesia team here is an amazing team who does such an awesome job. Dr Lazareff and his team already told Dr Bao they would definitely want to come back as they enjoy so much working together so far. They think the Americans and the Chinese make a very strong and skillful team together!

Well, another day I walked out of the hospital tired but with a big smile! Seeing how the children are getting healed is such a fulfilling feeling!

Tingting

Tuesday in Shanghai

This is part three of our postings on the Shanghai neurosurgery mission done in partnership with the Shepherd's Crook Ministries.

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Another day of successful surgeries! And another day for dedicated people to pull together all for the sake of children. Here is news from Tingting's report:

Hou came out of his surgery crying very hard, but a volunteer gave him a toy that could sing if you pulled on it. He loved it and it really calmed him down. He made it sing over and over and slowly he got himself back to sleep.

Jasmine came out crying too, but a volunteer really worked hard to sit by her and calm her down, and she soon fell alseep. When she woke up, she was crying again. Her caregiver picked her up, and one of the American doctors was there blowing bubbles to her. That really calmed her down and she even gave a few smiles!

Lily cried too when she came out of surgery, and she was also surrounded by so much love from her caregiver and volunteers. Lily is so tiny that her diapers didn't even fit her! But her caregiver was so nice and she held the diaper in exactly the right way so that her surgical dressings would be okay.

Little Wendy's surgery was quite long. Her orphanage director and foster mom were waiting outside the OR just so anxiously waiting for news. Wendy came out and the orphanage director immediately went over to hold her hand and walk down the hallway with her as they wheeled the bed to her room. Wendy was half crying and half moaning, but she was quickly falling asleep as the orphange director and her foster mom were taking such good care of her.

Taylor was the last one who came out. Before he came out, the volunteers kept saying how handsome he was going to be without the huge lump on his head. When he came out, people ran to see him and tears filled everyone's eyes seeing this little handsome man with a normal head shape now. He was sleeping soundly.

Some of the kids from yesterday were crying a lot today because it was hard for them to accept laying on their tummy. Naomi was definitely a fighter - she never stopped crying and her caregiver never got any sleep, but she was still so patient and so loving, trying everything she could to make Naomi calm down. Han was crying too but she was also surrounded by loving and caring caregivers. Jacob and Wendy (the older one) both had fevers today. Jacob has been sleeping most of the time. Wendy was awake and she was proud of herself being the oldest child there and setting a good example for the others kids to be brave. She always tried to smile. The volunteers love this child so much!!! Heather doesn't need to sleep on her tummy - lucky her.. so she has been sleeping most of the time!

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Late on Tuesday night, Dr. Bao called Tingting and said he was still in the hospital checking on all of the kids. He said everyone was sleeping well and all the babies were quiet. Tomorrow's surgeries are Fan Ai, TianTian, Julia, Liu, and Yuan. As always, we are so grateful for your prayers. Here are some more images from today. The little girl below definitely was not happy about seeing the nurse come her way.

Shaving Lily's hair before surgery.

Enjoying a bath with a wonderful volunteer.

This little girl is still so beautiful with her freshly shaved head.

Monday in Shanghai

Part 2 of our blog on the Shanghai Neurosurgery Mission, in partnership with the Shepherd's Crook Ministries.

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We got the wonderful news today that all five children having surgery on Monday had very successful operations! Tingting said it was beyond words to share the excitement with the doctors and caregivers seeing such big spinal tumors being removed and knowing the kids had a great chance at a healthy life.

Remember Wendy from yesterday? The little girl who admitted she was afraid? She came out of the OR awake, and even gave everyone a smile, but then she quickly fell asleep again. When she woke up, Tingting asked her in her ear how she felt, and she said "happy", even though her hand was hurting from the IV. Tingting told her to be brave and strong, and she nodded and smiled. What a sweet, sweet child.

Poor little Jacob came out so very hungry since he couldn't eat the whole night before. He was crying, but his caregiver was patiently patting his back and sitting right by him. She kept looking at the clock over and over as she couldn't wait for the time to pass so it would be safe for her to feed him again.

Another baby girl who had arrived in Shanghai with an enormous tumor on her back came out of surgery sleeping peacefully. When she first came out, they allowed her to lie on her back for a couple of hours. Everyone felt it was amazing to see this baby finally able to lie in that position as her lump was just so huge before. They all said that was why she was sleeping so soundly!

Little Naomi was a fighter - as everyone knew she would be. This gorgeous little baby is so attached to her foster mom and she wants no one else to be near her. Dr. Bao, the neurosurgeon, met her and said he wished he could just adopt her on the spot, but she would have nothing to do with him! (nor any other volunteer). She cried all the way into the OR once they took her away from her caregiver, and she came out crying as well. Her foster mom wanted to pick her up so badly and it was so hard on her that she couldn't right away, so she was talking non stop in Naomi's ear and patting her to sleep.

Tingting said that she was just so touched by how loving and caring the caregivers are. When the babies cried their way into the OR, she knew it broke their hearts as when the aunties and foster moms came back into the waiting room, they were all in tears. Tingting told them all they should try to take a nap during the surgeries, as they probably wouldn't be able to sleep tonight since the babies would be uncomfortable. but none of them took a nap. They were waiting anxiously for news on their babies, and they even refused to eat. She said they were truly restless counting every minute until their babies came out.

We also want to say a huge thanks to our volunteers in Shanghai. They helped bathe the babies and had so much fun. They also held the babies and brought food and snacks for the aunties, and just generally did anything asked of them. One wonderful volunteer named Pam came in yesterday for the first time after lunch. Tingting took her to each room and introduced her to each baby, and after meeting them all, Pam took Tingting's hands and said "thank you". Later that afternoon, Tingting had to join in on a doctor's meeting for surgical plans and then later than night she went home. Today when she went to the hospital, she learned that Pam had never left. She had stayed over night watching the babies so that all the caregivers could try to get some sleep. She even went out to buy the caregivers pajamas, toothpaste and shampoo/shower gels. And tonight she is coming back to do the same thing. There are just so many kind and wonderful people in this world.

We also want to mention that a restaurant in Pudong is donating all of the lunches for this mission. The "House of Flour" (www.houseofflour.com) is providing incredible food and even sent over a beautiful birthday cake for one of the doctors who had a birthday today. The people in Shanghai are going above and beyond for these kids. If you get a moment, drop them a line and tell the owners (Brian and David) that what they are doing is great!

Thanks EVERYONE for your thoughts and prayers for these gorgeous kids.

Baby Wang

Monday and Tuesday this week was a blur for a little 2 month old baby from Henan named Wang. This baby had a spinal tumor that broke open on Monday morning. Because neurosurgery is so specialized, and because we have a wonderful neurosurgeon in Shanghai, we knew we need to try to get him there immediately. Through the coordinated efforts of many people, Wang was on a flight to Shanghai Monday night.

Arrangements were made to have this child fly on a China Eastern flight from Zhengzhou to Shanghai. Once they were in the air, one of the flight attendants noticed this baby and the caregiver. She thought it was the baby’s grandmother, and she asked the caregiver how her grandson was doing. She noticed that the caregiver was having a hard time understanding her, because of the difference in dialect, so the passengers around her helped to translate for her. From their conversation, the attendant learned that this child was an orphan and was on his way to Shanghai for emergency surgery. The attendant was a new mom herself, and she was so touched by this baby's story. She told the caregiver that she would be happy to help change diapers and give the baby a bottle to help out, but in her heart she still felt like she wanted to do more. So she went into the cockpit and told the pilots about this little boy and his story. One of the pilots, who was also a parent, thought they should all do something to help. He asked the flight crew to donate for baby Wang's surgery, and then he broadcasted over the flight system about this child being on the plane! The pilot asked everyone to send their good wishes to this little boy so that he could have a successful surgery. When the passengers heard this announcement, they started to donate funds as well.

In all, over 2300 rmb was raised on that flight! Isn't that such a wonderful story?

In Shanghai, the wonderful group of LWB volunteers there went into action and put out a plea for assistance for the baby. The nanny and baby Wang were picked up from the airport by private van, checked into the hospital, and then Wang was examined by the ER doctor. This group of volunteers also started a collection of their own for his surgery and were able to completely finish paying for his care.

Tuesday morning, Wang was thoroughly examined by Dr. Bao, the neurosurgeon, and we were told that he was quite severe. His surgery was scheduled for that very afternoon, and we all were so thrilled to get the wonderful news that his surgery was a complete success! The spinal tumor didn’t involve any of his nerves, so he will now be totally healed. In addition, Dr. Bao said that without the wonderful team of people who pulled off the transfer so quickly, he would have been in serious danger. This child received surgery, several provinces away, a little over 24 hours from when we first heard about his emergency. We couldn’t have done this without the wonderful support from his orphanage, our facilitators, the volunteers in Shanghai, and the very giving people who helped along the way. How grateful we are that this child was surrounded by the love and generosity of so many great people.

Please keep this child in your thoughts and prayers as he continues to heal!

Oh What a Beautiful Boy

We are so grateful to everyone who kept BaoJin in their prayers last week as he had his very complex surgery to remove a huge tumor from his backside. The tumor itself ended up weighing over 4 pounds. Today Tingting went to visit him at Shanghai Children's and she reported that he is doing just so great. Today was the first day he could be up and held, and so his caregiver held him constantly and walked with him everywhere. Tingting said you could see her walking up and down the hallways with him in her arms. He just loved being held and any time his aunty would try to put him back down for a moment he would cry, so everyone took turns loving on this sweet child.

His story has certainly touched so many people in Shanghai. There was a 13 year old girl in the hospital herself who had been coming to visit him each day, and when they told her that she was being discharged, she didn't want to leave because she wanted to feed BaoJin one more time!

He also got a little stuffed animal today and absolutely loved it.

We are all so thrilled that he has been healed and is on the road to recovery. His story is truly one that we will never forget, as so many people thought he did not have a chance and yet once again we have been shown what miraculous things happen when people come together to touch the life of a child.