Butterfly Children's Hospice

Jesse's favourite things.

2012-02-21T03:41:00.000-08:00

Packages don't often arrive in brown paper, tied up with string anymore, but we still think they are Jesse's favourite things. Lately he has been the very happy recipient of two beautiful packages - one from the United Kingdom, and one from Australia. He certainly looks pleased to find that he has mail.

Melanie in Australia made Jesse this wonderful quilt. Its elephant themed, and very sturdy - perfect for play on the floor. It has fun testures, and even has his name carefully sewn onto it. And for Jesse, having his own familiar quilt beneath him will help build the confidence he needs to try new things. Actually, it looks like it could be working already - he has been up to some pretty funny tricks as he tries it out. Not too bad for a little boy who used to sit in one place, too afraid to take a chance on moving.

Jesse's cute outfit was also new this week - from a parcel sent by Cas from the UK. He looks great in it too - he is such a handsome little boy.

We are so thankful to Melanie, Cas and everyone who shows love to our children by sending parcels, donating, sharing their stories and sponsoring their cots. We can't say often enough - your love makes a difference. These children know they are special, and it shows in their smiles and their sparkling eyes. What's more, people around us are moved by the kindness shown to our children. Each gift, each donation, every minute of time given - all these things shout out to the world that these children matter. Together we are changing children's lives, and changing hearts too!

Daphne

2012-02-16T01:06:00.000-08:00

We have introduced some of our volunteers from other countries, but we'd like you to meet some of our local staff too. These amazing women are the ones at the front line - caring for our kids day by day. They should all have degrees in Applied Practical Love - they do it so well.

This beautiful lady is Daphne, who has been with us since we opened here. She originally joined our team as a cleaner, and she worked diligently to keep the Home looking spick and span. Each day, Daphne had a lunch break - time for her to relax, sit down, call her friends or maybe even take a walk. But Daphne never chose to do any of those things - she always spent her lunch break cuddling babies! She especially loved to scoop up tiny Angel and give her a little extra loving.

Over time we discovered that Daphne had another skill - cooking. Now she still does housekeeping, but she also cooks for the children. She loves to make special food for each individual child, and takes such care of the ones who have certain needs or difficulties with textures or flavours. Thanks to Daphne, all our children get fresh healthy food, made with loving care and attention to detail. And, every child can count on a special treat during the day - Daphne knows each of their favorites, and makes sure that they all get to be spoilt a little now and then!

Here is Daphne's recipe for a healthy high protein breakfast for babies - no wonder our kids are growing so well.

Breakfast cereal
This can be eaten hot or cold, and can be pureed for young babies. It has lots of fibre and is nutritious. You can add milk or fruit before serving to taste even better.
Red Beans 1 cup

Green Beans 1 cup

Sugar ¼ cup

Rice 1 cup

Cold water 3 cups

Put all the ingredients in a slow cooker on auto for 5 hours. Turn off cool and serve.

We are thankful for Daphne's gifts and the way she uses them to love these children. She is a hero in our eyes!

Charm and determination

2012-02-14T21:49:00.000-08:00

Our Little Swallow is growing up. She has done that incredible thing kids do when they go from 'baby" to "little girl" in the blink of an eye. We think she gets more beautiful every day.

She's getting smarter by the day too. She's already starting to string words together to make small sentences, and to use language in a purposeful way. Her personality is cheerful and relaxed, with a streak of stubborn when it suits her. It's a good thing, that stubborn streak. She will be able to draw on it as she works during her therapy sessions and learns the best way to use her legs. Actually, we are fairly certain that nothing will stop this little girl. Charm and determination are a pretty special combination , and she has them both.

Swallow loved to play with Angel, and she is missing her since she went to be with her family. We can't wait until that day is here for Swallow too!

Hallo again Wei Wei

2012-02-12T14:33:00.000-08:00

Last time we saw Wei Wei the hedgehog, he was supporting Annie's neck. Now he is snuggled up with Thomas and giving him some comfort. This little furry guy certainly pops up all over the Home! Thomas is a quiet boy. Without much sight or hearing, he is limited in the ways he can experience the world. But his sense of touch is still there, and WeiWei has a nice soft texture that he seems to appreciate.

Life for Thomas is full of challenges, and for every step forward there seems to be a corresponding step back. Lately he has made some progress with eating, and can actually take some food from a spoon if his Ayi feeds him very slowly and carefully. On the other hand, his seizures have increased, and we need to adjust his medication to try and control these. Forward and back - it's a delicate dance. Sometimes it's just so hard - like running a race where you just can't get past the starting line. For every move in the right direction, something else happens to pull you back.

And then you look at his sweet soft cheek and realize that it's not about reaching a finish line. Every day with Thomas is an opportunity - a chance to saturate him with love, another precious day when we can wrap him in tenderness. We can't tell how many days we will get, and we can't predict the ups and downs of each day. But we can treasure each day and do everything possible to make Thomas comfortable and happy. Suddenly that dance doesn't look so complicated anymore.

Finlay Update

2012-02-09T14:39:00.000-08:00

We have had a few people asking about Finlay - the baby boy who came to us for palliative care because of his inoperable heart condition.

Well - after two operations, a whole lot of TLC, and a heap of support from all over the world, this little boy has a different life ahead of him. His blue lips are in the past, and he is gradually starting to realize that he can actually do things now. That sounds strange - but for all of Finlay's life, he has learnt not to try too hard. His little body has quite clearly shown him that it's better to sit quietly and concentrate on breathing. Reaching out or exerting himself has been so uncomfortable for him that he has learnt not to do it.

So now we are teaching Finlay that his limitations have been removed. He is tentatively beginning to stretch his boundaries - and finding out that this is fun! It's amazing to watch him learning to live a healthy life. We are making sure we find just the right balance between challenge and re-assurance for him - we need to encourage him to extend himself, but we want him to always feel safe. What a privilege to walk alongside the beautiful boy as he rediscovers the world and his own abilities! And thank you so much to all who helped support him and make this possible.

Right where she belongs!

2012-02-06T13:52:00.000-08:00

Today sweet Angel is right where she belongs - in her mother's arms.

Early in the morning, we played Angel's favorite CDs to calm the atmosphere a little. Some babies were already at their physio appointments, and this made for a slightly quieter environment. It was a good thing to have a calming morning after yesterday's excitement. When it was time, Angel said goodbye to her little buddies at the Butterfly Home. They will always be part of her story, and we have made sure she has lots of pictures to take with her so that she never forgets these special relationships.

Daphne carried her down the corridor. I think the picture conveys better than words how hard this part of the day was.

But then came the joyful moments we have all been anticipating since she was matched with this beautiful family. Angel was well prepared, and she handled everything amazingly. Her family were so excited to finally be meeting the little girl they had loved since they first saw her precious face.

There were goodbye hugs for Jane, Angel's ayi, who accompanied her. Such a special, emotional, wonderful day. Angel - we are so proud of you. You will be deeply missed here, but we are incredibly happy to see you in your mothers arms. Know that where-ever you are - you will always have a cheer squad right here at Butterfly Home!

How do you farewell an Angel?

2012-02-06T04:46:00.000-08:00

Why, with a party of course!!!!

It's time to farewell our precious Angel. Tomorrow she will be meeting her wonderful family from the US. Together they will be spending a week or so in this province completing paperwork, and then heading to the Guangzhou for another week, before flying home to begin their new life together. Angel will have parents, siblings, aunts, uncles and grandparents. She will have her own home, where she will know she is safe and loved forever. She will truly belong, and for that we are so, so happy.

But for today - it is our turn to show Angel just how much we love her too. She came here as a tiny baby - looking a lot like the saggy baggy elephant. Her skin was too big for her tiny body, and it hung from her in folds. How wonderful it was to watch her cheeks fill out and her little legs get positively chubby. Angel has grown and thrived, and we have all fallen head over heels for her big personality.

Before the party could begin, we had to wait for the guest of honour to wake up.

A change of clothes, and Angel was ready for the party.

The celebration started with a heartfelt blessing read by Lyn. Cake, biscuits and yummy fruit were served, to the delight of all the children.

Everyone got a bit emotional watching the picture show. There were photos of Angel's first days with us, her birthday party and lots of lovely shots of her with her friends and ayis. There is no doubt that this little girl has been well loved.

Later Daphne gave Angel a special gift of a jade dragon bracelet, symbolizing protection and love. Daphne has always had a very special place in her heart for Angel. She is very happy to see her treasured little one adopted into a wonderful family, but of course her heart is breaking at this goodbye. Adoption is such a complicated fabric, woven of both love and loss - but such beauty comes from the weaving when it is done tenderly and carefully.

Finally Angel's bag is packed, ready for the morning. She has her own special blankets, some clothes and some of her familiar belongings. There is also her lifebook, the story of her life so far. Amongst its pages are 'love letters" from the people she has met along the way. Even the reporter from the CCTV news was captivated by Angel, and wrote her a letter for her lifebook.

Tomorrow morning, Angel's new life begins. We will miss you, sweet girl, but how happy we are to see you going to your family. What an incredible story you have already . We are thankful to have been a part of it, and we look forward to hearing about the next chapters.

Novel use for a hedgehog.

2012-02-03T14:12:00.000-08:00

We love this cute picture of Annie with her hedgehog. The toy is perfect for supporting her head in a comfy position. Annie does have a neck brace which she also uses, but she seems to prefer the hedgehog. He is super soft, so we guess he is just more comfortable than the neck brace. Jesse and Thomas like the feel of this hedgehog too. He is called WeiWei - Chinese for hedgehog - and was a gift from one of our sponsors. So thank you very much! It just goes to show - you can never be sure how we will use your gift at Butterfly Home. Thank goodness it's not a prickly hedgehog!

New nurses.

2012-02-01T05:28:00.000-08:00

We are over-the-moon excited that our two new nurses have just had approval granted for their visas. That means that all the right paperwork is in place, and the time has come for them to pack their bags and begin an incredible adventure. We are really looking forward to welcoming these young women to the Butterfly Home team. Both nurses are from the Philippines, and this will be their first time in China. They each have experience nursing in their home country, and they speak great English.

Having permanent qualified nurses on staff will be incredibly valuable. Our children will benefit from their expertise and our staff will benefit from their teaching. We will be working together to establish good nursing standards as a firm foundation for employing and training local nurses in the future. Having consistent nursing personnel in the Home will also allow Lyn to step into the office more often, giving her more time for management and future planning. So important in a growing organization.

We are thankful to South Coast Christian College in Australia - this school has generously sponsored our nurses. www.sccc.vic.edu.au
Thank you SCCC - without you, we would not be making this exciting announcement at this time. We are deeply grateful for your support.

Please keep Irish and Danice in your thoughts as they prepare to say goodbye to their families, and make the journey to join us. It is our hope that they will adjust quickly to their new environment, and find the work both exciting and rewarding. We are excited to share both the challenges and the joys of this work with them, and we hope they will be enriched by their time here.

A different type of Butterfly House

2012-01-23T14:49:00.000-08:00

We are so thankful for the support we receive from our neighbours. It comes in all different forms - donations of milk powder and nappies, letters of encouragement, financial support, and sweet volunteers giving their time and hearts. We love being part of a community effort - each set of arms tenderly supporting our kids is supported in turn by a whole loving "family" - both local and across the world. It's something really special.
And we have to say - sometimes the support we receive comes in surprising and beautiful ways. Just recently, Lyn was honoured to open the Butterfly House at the botanical gardens. That's not another Butterfly Home ( though of course, that will be coming) - that's a Butterfly House - full of butterflies, not babies.

You can guess what the accessory of the day had to be. This is Lyn, and Hannah's ayi, Rose, both sporting beautiful butterfly nose decorations! They will be the big thing next season, just you wait and see.

Hannah came along too, and she posed in front of all the spectacular decorations. To be honest, Hannah was a little overwhelmed by all the pomp and ceremony. In this country, they know how to make an occasion really special. It's incredibly impressive, but for a little child, it can all be larger than life. But Hannah's ayi was right there with her, and we were proud of the way she coped with such a stimulating environment.

Of course, there were speeches.

And a symbolic release of butterflies. That was lots of fun. It was also meaningful for us - there is always a moment of release with each of our children. For some it is the incredibly joyful moment they go home with an adoptive family, for others the heartbreak of seeing them leave this world. But for every child, it is our job to make that journey beautiful and to love them every minute we have with them.

Great food is part of any celebration here, and this day was no exception. It's about this time that Hannah became really glad she had come along!

And the Butterfly House made a very generous donation to our Butterfly Home. In addition, they have pledged a donation of 1 Yuan for every ticket sold. So please, if you come here, go visit the Butterfly House at the Botanic Gardens. It's a beautiful place to visit, and they are kind and generous friends to us.

Television link

2012-01-19T13:24:00.000-08:00

We have been featured on Chinese CNTV. Go have a look!

http://news.cntv.cn/china/20120119/124004.shtml

You can see Lyn speaking, and some of our sweet ayis sharing their hearts. Even if you don't understand Chinese, you can't miss the emotion they are feeling. And of course, you can see the children being very cute, even with their faces blurred.

Snugglebug

2012-01-16T16:12:00.000-08:00

This little snugglebug is Patience, and she has not had a formal introduction on this blog yet. Patience was premature with a very low birth weight - a teeny tiny feather of a babe. We couldn't even be sure she would make it, but look at how far she has come!

It's no secret that her ayi loves her - you can see it written all over her face. And look at how much Patience has grown. These days she is a cute little button with a head of dark hair and sparkling eyes. Actually, Patience has curls in her hair - not common in this country. She also has cerebral palsy, a condition which limits her physically, but doesn't stop her love of life. She can roll over, and lift her body up on her hands, where she likes to bob up and down like a little bird when she is excited. It's very funny to see her experimenting with a mirror - she makes curious faces at herself, and then laughs at what she sees. She's such a happy child - you hear her laughter all over the room. At music time, she even tries to whistle along. Though she may be named Patience, her attitude is pure joy.

We have such big dreams for Patience. We hope one day she will be adopted by loving parents who see the beauty in her smile, and rejoice in her achievements. In the meantime, we will be working to help her achieve her potential. She has lots of floor time planned for her, with games to build her core strength and fun ways to learn about cause and effect. She will be hard at work, learning and developing, but we intend to make it so much fun that she won't even even know it's work! And one day, we hope to say goodbye to our dear Patience with hearts full of love and pride, as she takes her place in her very own family.

Happy Birthday Jesse

2012-01-14T15:15:00.000-08:00

It's Jesse's birthday, and so it's time for another party. Of course, there has to be a beautiful cake, lots of singing, and lots of excitement. Jesse uses his fingertips to check out his cake.

It's Jesse's day, and doesn't he look the star of the show. He's sitting up very straight and tall while everyone sings Happy Birthday and wishes him well. He is such a precious child - it is our great hope that a family will recognize his beautiful soul and adopt him. Imagine...Jesse could be celebrating his next birthday as somebody's son. Wouldn't that be amazing!

And now - let the cake eating begin!!! If you love cream and sugar, these cakes are pretty wonderful. And they have fruit on top, so they are even a little bit healthy! Well.... perhaps if you only ate the fruit. But hey, birthdays are not the time to start a health kick.

Happy Birthday Jesse. May your life be full of blessings.

Looks who's standing up!

2012-01-12T14:16:00.000-08:00

Here is precious Angel, just getting some help to grab herself some tissues. She's been cruising furniture for a while now. But these days, she can let go of any support and rely on her own balance and strength. Angel's confidence is growing - this little girl will be running around the Home in no time.

Isn't she just the cutest thing? She's standing up tall and feeling very happy with herself. And her pigtails are pretty sweet too. This girl has always had amazing hair. When she was just a little baby, she had very thick hair which grew straight up in the air. She looked like a tiny punk rocker. Now she's perfected the pigtail look, and we think it really suits her.

We couldn't be prouder of this little girl. She has a heart full of tenacity and courage, and we just know she is going to make a difference in this world. We feel so thankful to be her family now, and we can't wait to see her united with her new family - hopefully soon!

Remembering Isobel

2012-01-11T16:10:00.000-08:00

We've just had New Year on the Western calendar, and now we are looking forward to the crazy riotous celebration of CNY. It's an incredible time - wild, over-the-top, sometimes exhausting fun. One of the first lessons a Westerner needs to learn about CNY is that there is no "right" moment for firecrackers to go off - four o'clock in the morning seems to be a popular time! You just have to relax and enjoy the excitement. It's a time to let go of expectations and embrace the unexpected.

But New Year in any culture is also a time of reflection, and in our Home there is much to reflect on. We are full of joy when we think back about Finlay's story - a "non-surgical" child, now post-surgical, and enjoying a life with more energy, more strength, and full of hope. And Jonathon: once expected to slowly lose his abilities and finally die - now in foster care, learning new things and enjoying family life. We love looking around and seeing Annie's smile, enjoying cuddles with Patience, and watching Jesse's growing confidence.

However, we are a hospice facility, so there will always be faces missing from our little family. Sweet faces like Isobel's - a little girl who inspired us all with her courage and her spunky attitude. Remembering Isobel brings a pang of sadness, but also much thankfulness. Her life was short but she was cherished, and she knew love. It's sad to think that she could have missed out on that.

Isobel came to us with advanced liver disease. She was frail and yellow, with a hugely distended abdomen. Pain was contorting her features and her personality was masked by her suffering. The little girl behind those sad eyes was unreachable. She was in her own private world and she was afraid to let anyone see inside.

We are so grateful that we had the opportunity to care for Isobel.It was a privilege to see her emerge from her sorrow. She surprised us with her tenacity and her will to live. This little girl became the princess of the Home. She knew just how to balance cheekiness with cuteness: just cheeky enough to get the laughs, but cute enough not to get in trouble! She was active and mobile, and loved to show everyone what she could do. Sometimes she would tease the less mobile kids by swiping their toys or pacifiers as she raced past. Sometimes she would tease the grown-ups by touching things she shouldn't! But she always flashed that impish smile which was guaranteed to melt hearts. Isobel was adored, and she knew it - she knew that she was worthy. Knowing that truth had such an incredible impact on her short life. She came as a hopeless case , but she lived as a true princess!

Our Isobel died in July last year. She was amazingly active and healthy up to a very short time before her death. She was never alone, and the night she passed away, she was surrounded by love. She was held and sung to, and she left this earth knowing with certainty that she was treasured. Isobel, we miss you still. You brought a splash of drama to our Home which was uniquely yours.

RIP precious girl, til we meet again.

Even though we hope for the miracle of healing for every child, sometimes the miracle of a cherished life is just as precious.

Music time

2012-01-09T15:21:00.000-08:00

Our kids love music. Perhaps it helps that our ayis love to sing - you can often hear an ayi softly singing her little one to sleep, or cheerfully singing a happy tune with a child at play. Music is always in the background here, but at certain times of the day, it definitely takes the foreground!
These are music times: when the ayis gather all the children together in the play room for a group session. The kids really seem to enjoy these crazy sing-a-longs. Sometimes the ayis lead, and other times they use recorded music. The children each respond in their own way - some clap along, some use toys to contribute to the volume, others sing or dance. The more active kids are usually a blur when music time is happening. These picture are from before Christmas, but they show the joy of music time so beautifully.

Hannah dancing with her whole heart!

Angels hands are just a blur as she claps along.

Some of our children have quite marked physical challenges, so it's hard to see that they are responding at all. But if you look closely, you can see that their little bodies are leaning forward to catch the sounds, or rocking gently to the rhythm. Music is great therapy for these kids - the melodies and rhythms often reach them more powerfully than language can.

This is Patience, having her own private music time. What a look of complete engagement! She is listening so intently. Her aural skills are developing, and who knew therapy could be such fun!

Meet Lana

2012-01-03T19:40:00.000-08:00

We thought it would be fun to introduce a few of the grown-up faces around Butterfly Home. This is Lana.

As you can see, Lana is heaps of fun, and she really enjoys her work!

Lana was born in Scotland, but grew up in a village in Germany. She went to primary school in Germany, and then to boarding school in Scotland as a teenager. After school, she stayed in Scotland to study Psychology, and to do a Masters degree.

So how did all this lead to Butterfly Home? Well, Lana came to this country to study language and to teach English. Once she had settled in, she started to look around for volunteer work which might utilize her excellent qualifications. After a first visit to Butterfly Home, she was inspired to do a cycle to raise funds. Now 10 or maybe even15 km might be a good start you would think....but no! Lana and her friend Neil decided to cycle 750km. They did an amazing job: cycled the whole way without serious injuries, enjoyed some incredible experiences, raised a lot of money and promoted awareness across the country. You can read about their incredible journey here:

http://cyclingforbutterflies.com/follow

Now Lana is spending a year at Butterfly Home as a volunteer administrator. She is committing the same energy level she had for cycling to her many roles at the home. She acts as a liason for our volunteers: arranging travel, accommodation, registration and other details, as well as giving them orientation tours and help with interpretation. She has duties in administration, writing reports and supporting Lyn and Suisie in the office. Most importantly, she assesses the children's development and emotional health, setting goals, and making plans for thier therapies. Lana also makes lifebooks for our children before adoption - such an important treasure for kids going through a lot of change.

This is what Lana has to say about her work here: " Since in BCH, for the first time I have found a job where I can be in it with my whole body and mind. I love going to work and even find myself in the BCH on my days off. Although the Butterfly Home works in devastating circumstances, there are more happy days then sad. Seeing and making the babies laugh is incredible. Every child has their individual illness which they take on very well with their cute personality. For some of them the conditions of their illness or also living in a hospice environment causes their development to be behind. I am interested in how to help the children develop better. My first developmental class at uni was about attachment and how much more vital love is than food. I believe the children survive because of the loving environment they are in."

We are so thrilled to have Lana with us, and thankful for her very valuable input. We hope that her time here continues to be incredible, and that she will take away some precious memories. We know for sure that our children and the things she has seen here will be forever in her heart. And hopefully, Lana's story will inspire others to volunteer. There are wonderful organizations all over the world, and we need all the help we can get. Requirements are simple: a bit of courage, a bit of common sense and loads of compassion. And you just might find you are amazed by how much you recieve when your heart is taken up with giving.

Jonathon's Christmas

2012-01-01T14:52:00.000-08:00

Of course, there was one special Butterfly enjoying Christmas across the city from us - because he was celebrating Christmas with his family. Jonathon is doing so well in his foster family, and you can just see the contentment in his eyes. This year was actually his first celebration of Christmas (as far as we know). He came to Butterfly Home early in the year with the expectation that he would most likely die before Christmas even came around. Just go and look at him now:
http://drewandrachel.blogspot.com/2011/12/pink-and-green-christmas.html
It brings our hearts such joy to see this little guy with his brothers. Don't they look like the best little buddies? We are sure they have their moments, but there is something special going on here, that's for sure. Jonathon has made huge developmental strides since he was welcomed into this family - we are so incredibly grateful for the way they love him. The best miracles begin with love!

A special gift for Thomas.

2011-12-30T14:27:00.000-08:00

Thomas is a little boy who has a lot of challenges. He has a metabolic disorder which is gradually robbing him of his abilities. He is blind and partially deaf, so his interaction with the world is through touch. He can sit a little with support, but his muscle tone is very low and he cannot crawl or move around. Sucking his fingers seems to help him relax.

This Christmas, Thomas received a really helpful gift. It's something which can help him feel part of things during music time, or when the children are playing on the mat. Something which can provide rhythmic movement to soothe him, and which can give him a comfortable place to suck those fingers. Thomas is four, so he is too big for conventional baby rockers, even though they would be just right for his developmental needs. That's why this gift is so wonderful for him.

It's a rocking hammock - just the right size for Thomas. It means he can sit with the others while they are having floor time. He can be gently rocked in time to the music, or moved back to relax in a quiet spot. What a perfect gift!

Once again, we cannot thank everyone enough for the thoughtful gifts provided for our children this Christmas. We can't show them all on the blog (or it would take weeks) but we are thankful for every single carefully chosen gift. It was so exciting to open them on Christmas day, and now we are blessed by the ongoing benefits to our children. There is a whole lot of playing, learning, puzzling, listening,relaxing, and good old fun going on around here - thanks to the generosity of our Christmas angels.

More Christmas mayhem

2011-12-29T13:48:00.000-08:00

We know there have been plenty of Christmas pictures here already, but there are a few more which are too cute not to share. It was really such a fun celebration, and of course our supporters were a big part of it. We certainly know that without everyone out there, there would be no celebration, no gifts, and no Butterfly Home. So, thank you everyone!

Every boy needs a football, right? Kicking is actually a pretty tricky skill for a one year old to master. You have to be able to balance on one foot while you kick with the other one. Young Paul is such a well coordinated child that we think he will get the hang of it quite quickly.

This is a lovely picture of Jesse starting to find out about his new toy. He is using his hands to carefully explore. There was a time when Jesse was so anxious about touching new things - look how far he has come! We love this boy so much, and we really hope that a family will claim him as their son. They will be so blessed: he is a wonderful little boy.

Sarah is watching carefully to see what is inside her gift. Photographing her from above shows her lovely eyelashes - so pretty.

William enjoying a Christmas cuddle. His eyes are wide as he takes in all the excitement.

Funny little Sarah likes to sit inside boxes - and there were plenty of boxes available for her after Christmas presents were unwrapped. Though this one proved to be a little small for comfort! And doesn't she look grown up in her little jean leggings?

Hannah's got wheels.

2011-12-28T13:38:00.000-08:00

Here is Hannah getting ready to open one of her gifts. You can see the anticipation she is feeling.

Now that it's open, she looks a little bemussed. Perhaps she is not sure what it is? Or perhaps she is just distracted by everything else going on this morning.

Now she is figuring it out. Love her look of total concentration as she masters this new skill. Knowing Hannah, she will be zipping up the passageway like a champion in no time at all.

Santa came to visit.

2011-12-27T12:54:00.000-08:00

Alan played Santa, much to the children's delight. Most of them knew it was someone familiar of course, though a few were a bit thrown by his shiny red suit. It's actually much better for our children to have a Santa they know,and who doesn't wear a fake beard. They've all had trauma in their lives, and we don't want to frighten them on Christmas day. Here's a selection of our "Santa shots" for you to enjoy.

Dear little Angel is looking so sweetly up at the camera. Shape sorting games are great toys for encouraging problem solving skills and spacial awareness. We are sure Angel will have this mastered in no time.

Tiny Benjamin has a lovely soft toy which is just about bigger than he is. We hope it will bring him a lot of comfort and help him to feel secure.

Hannah and Santa are posing by the Christmas tree. Children (and adults!) in China will almost always pose for pictures with two fingers held up like this.

Patience seems to enjoy snuggling up to that soft furry trim on Santa's coat.

Beautiful Little Swallow is keeping her hands on her gift - we love toys which provide sensory stimulation and mental challenges for the children. Stacking from largest to smallest is actually an early basic mathematical skill. We can also use toys like this to teach colours in both Chinese and English. And it's all good fun - which is so important for little ones!

Paul has a good grip on his markers. We will look forward to some beautiful one-year-old masterpieces for the Butterfly Home fridge!

Jesse's toy has lots of texture and makes noises- just perfect for a boy learning to investigate the world using sound and touch.

Sarah is concentrating hard on the unwrapping process. She is waiting to see what is under all that bubble-wrap.

Stay tuned - there are still more Christmas pictures to come!

A Merry Christmas at Butterfly Home

2011-12-26T14:57:00.000-08:00

We hope all our supporters had a very special Christmas. We certainly had fun here. Our precious children enjoyed gifts from all over the world - beautiful thoughtful gifts, wrapped and sent with love. It was beyond wonderful for the children, and their faces were just the way children's faces should be at Christmastime - full of excitement and joy, with a little awe as well.

It was also a great demonstration to our neighbours - a tangible way for them to see that these children are worthy. Our kids are orphans, and they have illnesses or disability. In some people's eyes, that makes them undeserving and unimportant. It sounds crazy, but an outpouring of love from all over the world can help change those preconceptions. And as the preconceptions tumble down, hearts are opened to our completely gorgeous and lovable children.

And now - on to some Christmas pictures!!

Here are all the gang, with Santa Al. Alan had his Santa suit especially made. I wonder how many Santa suits for Englishman that tailor had ever made? We think it must have been a fun job for him. Of course, Al didn't need to have a fake Santa beard, because he looks the part already. And he has a huge heart and a great "Ho Ho Ho" - making him perfect for the role.

Here is the scene of happy chaos, with everybody opening their gifts. Think of your average family lounge room on Christmas day, with quite a few extra people! Love Little Swallow sitting there in the foreground, serenely wielding a hammer. She's ready for anything.

Here are Sarah and Angel looking intently at their new toys. Angel is on the lap of her beloved Daphne - these two have such a sweet relationship. Daphne is our cook and she loves all of the children very much, but she does have a special place in her heart for Miss Angel. And Angel knows it too!

Jesse's ayis are carefully helping him to explore his gifts. Can you see how he places his hand gently on the lap of the person he is playing with? That way he always knows that they are still beside him. He is such a lovely little boy. We are so hopeful that he will have a family soon - wouldn't that just be the best Christmas gift ever?

We are so thankful to everyone who showered love on the children in this way. Words can't really express what a blessing it was. Our children had a fabulous Christmas!

We have lots of Santa pictures to follow. Check back - we will get them up soon.

Christmas Greetings

2011-12-24T22:27:00.000-08:00

Wishing you peace and joy, as we celebrate today's very special Birthday.

To you and your family, from the Butterfly Home family.

Our Christmas Elf.

2011-12-22T15:52:00.000-08:00

Ben looks just like our very own Christmas elf. He's the baby Butterfly at the moment - only 9 months old - and he is quite tiny. He has liver failure, just like Ysmael.

You can see that his skin and eyes look very yellow from the buildup of bilirubin in his system. His liver is just not doing the job it's supposed to do, so toxic substances are accumulating up in his body. The toxins are just the byproducts of normal life, and usually the liver gets rid of them in the bile. But for Ben, and for Ysmael, that process is not working properly.

But that's not what we think about when we are watching Ben enjoy the Christmas season. We love the way that he is interested in these new bright decorations which have appeared all around the place. He is probably a little baffled by the sudden explosion of bright, sparkly colour - normally our Home is decorated in sweet relaxing pastel tones. He seems to like these bright bold colours. It's so cute the way he is staring at the Christmas bauble with such fascination. Maybe he sees his reflection in there, and is wondering who that handsome kid is!

Ben is such a sweet little boy, and it is our privilege to be giving him the best Christmas possible this year. His cot is called " Blessed" - we know that we are blessed by sharing Christmas with Ben.

First sentence

2011-12-19T21:03:00.000-08:00

Paul has spoken his first sentence today. He was watching two other children being fed, and he said: "Ma - Yao chi.". To translate into English, he said " Ma, I want to eat."

This little boy is just so smart and developmentally on track.. He was walking before he was even one year old. Now he is just over one, and he has started to string words together and make sentences! He really enjoys good food too - so it is totally appropriate that his first sentence was about food.

We have speculated that Paul might take up a career in engineering, or become a rock star. But perhaps he will be the next great TV chef. He has that winning combination of good looks, engaging personality and an appreciation for fine food. Look out, Jamie Oliver - Paul might be after your job!

Of course, we can't begin to imagine what Paul's future will actually look like, but we do know for sure that this little guy is full of potential. We can't wait to see what he will achieve as he grows up. And we are already so blessed to see what he is achieving right now!

Funny boy

2011-12-19T02:37:00.000-08:00

Ysmael has quite a sense of humour when he is feeling well. He is being very comical here, sitting with his mouth wide open. He was very aware that everyone was laughing, and still he kept his mouth open, prolonging the joke. He sat that way for ages, making sure everyone had a good giggle.Then Paul came on over to join in the fun. He poked his finger right into Ysmael's mouth. Our little comedy duo had everyone in stitches!

It's so true that laughter is the best medicine!

Celebrations

2011-12-16T14:26:00.000-08:00

Anyone have their birthday right before Christmas? Finlay does - and it seems so fitting right now that this little boy's life is saturated with celebrations. First comes the joy of his birthday, and then the magic of Christmas.
Before surgery, it would have been quietly understood that these celebrations were likely to be Finlay's only birthday, and his last Christmas. But that has changed, and Finlay has a new future stretching out before him. Our hopes for him are different now - many birthdays, many Christmases, a family, friends, school - it's exciting to wonder what may be planned for Finlay's life. Right now, we are so happy to be celebrating that he is home with us again.

These cakes are just amazing. Looks like Finlay prefers his healthy baby food though. He got lots of presents for his birthday. His sweet ayis went to a lot of trouble to chose some lovely new winter clothes for him. Our children are not just a job for these precious ladies - they truely love each child that they care for.

He looks so handsome in the light of the Christmas tree. We can see that every day, he is becoming stronger and less afraid. He already has all the ayis doting on him. This boy has a gift for winning hearts.

Taking in the beauty of the Christmas tree. Bright lights and decorations are so mesmerizing to little ones!

We are so glad that you are home, Finlay.

Baby, it's cold outside.

2011-12-14T13:52:00.000-08:00

Remember that balmy autumn weather we were enjoying so much? Yeah - so do we! I think a look at these pictures will show that "balmy" is no longer the word to describe our weather conditions.

Isn't Swallow cute? Just peeping out from under her hat, with her fingers all snug in her jacket sleeves.

Annie's smile will warm up the day, no matter what the weather is like.

Thomas was awake when he first came outside, but he soon drifted off, tucked up under a cosy quilt.

And Angel looks like a little cupcake in her pink hat, coat, and quilt!

Thank you to all the wonderful people who have made and sent us our cosy quilts. You can see that they are well used and in much loved. In fact we have many local visitors exclaim over these lovely quilts. They are always very moved that people would spend so much time stitching beautiful things for sick and orphaned children. So these quilts not only keep the children warm, but also show our neighbours how loved and precious each of these children are. A hand made quilt says that this child is worthy of time, worthy of effort, and worthy of love. You would be amazed at how far that message can travel!

Hannah's angel.

2011-12-13T06:34:00.000-08:00

Our Butterfly Home Christmas tree has been decorated and we think it looks very special. While it's not the biggest tree you could imagine, it is decorated with love, and that makes all the difference. We are especially proud of our angel tree topper, made by one of our own little angels, Hannah.

Here's another picture, with the flash this time, so you can see Hannah's beautiful work. She was really proud to see her creation right at the very top of the tree.

It's getting exciting around here - only 12 days until Christmas!

Ultimate recycling

2011-12-09T23:14:00.000-08:00

How's this for imaginative fund raising? We have some creative supporters who have managed to transform the waste material from their equine companions (better known as " pony poo") into hope for our children. They have been faithfully collecting and selling pony poo to local gardeners to raise money for Butterfly Home. We love the idea that pony poo is being transformed into hope! That has to be the ultimate in recycling.
We are so thankful to all our supporters and the many different ways they bless our Home. There are so many talented, hardworking people out there, and we love seeing the amazing ways that you all come up with to show love to our babies. We have been sent beautiful quilts and knits to keep the children warm and decorate the home. We have seen people use their talents in many different ways - from cycling to creating beautiful music and art, to hosting events or organizing Christmas gifts. People have travelled to visit us and given of their time and their hearts, while others have given in the same way from their homes. We want to say thank you to every single supporter - your encouragement means so much, and without your backing, this work could not continue. Life here is sometimes heart breaking, often challenging, but always worth while. And it is sustained by the kindness and generosity which is shown to our children. Thank you!

Little doll.

2011-12-07T12:22:00.000-08:00

Doesn't Sarah just look like a little doll sitting in the toy box?

Actually, she is far sweeter than any doll could ever be. And her sparkling eyes are definitely the real thing. The nicest part of all is that Sarah's beauty is way more than skin deep. This little girl is so full of love and good cheer that she makes the world a better place for everyone who meets her.

Meet Ysmael.

2011-12-06T03:02:00.000-08:00

Ysmael hasn't made many appearances on this blog yet. That's because he is one of our quieter kids, and he needs to spend a lot of time resting due to his serious health issues. Sometimes he has good days, when he joins in and is quite engaged with the activities going on. He likes music time, and if a DVD catches his eye, it might keep him engaged for a little while. Other days he can be very tired and he needs a lot of sleep. On those days, he rarely eats any solid food, but his ayi makes sure he takes a bottle of milk as he rests.

He turned one a few months ago - so he's just a bit older that our two recent birthday boys. But he's not a typical one year old who is growing like a mushroom. In fact, it's a long time since Ysmael has grown at all. He weighs the same as an average 4.5 month old, and has stayed at that weight for many months now.
Ysmale has advanced liver failure. His skin is jaundiced, and his enlarged abdomen looks startling, while his arms and legs are like fragile sticks. On his stomach is a small surgical incision - it hints at the roller coaster of hope and despair that his first parents must have endured. It looks like he had surgery - an attempt to repair his condition - but the surgery was unsuccessful. It's impossible to imagine how his first parents must have suffered as they realized that their beautiful son would not live a long life. We don't know how long they agonized over their decision, but finally, they left their boy and he became an orphan.
Now Ysmael is one of ours. We know there is no cure for this little guy on this earth, but we are committed to loving him and serving him for as long as he is here. One of his hardships has been intense itching of his skin, caused by the jaundice. Lyn has recently started him on a new medication, and is hoping it will make him more comfortable. He's not mobile, but he likes to be carried outside when the weather is fine. And while he might not join in when the children play, he seems to enjoy being held where he can watch them.

Here is Ysmael at Paul and William's party. He tried a little cake, and really enjoyed sitting with Nai Nai Lyn and watching the fun . (Why yes - he is wearing pink! And looking very handsome.)

Kids like Ysmael are an incredibly important part of our work here. This brave little boy will never be adopted and leave us for a new home with a Mom and a Dad. We will never get emails about his first day at school, or learning to ride a bike. This will be his home for as long as he lives, and sadly, we know that our time together will be way too short. But knowing this only increases our resolve to pour love into every day and to make sure he is never alone. Ysmael's life will be cherished, and he will not cry out into emptiness. We will be there to hear him and respond - for every single day that he has.

What's better than an imaginary telephone?

2011-12-04T21:30:00.000-08:00

I think we have mentioned on this blog that Paul likes to pretend he is talking on the telephone. Well, it looks like the game gets really exciting when he gets his hands on a real telephone.

Wouldn't it be fun to know exactly what is happening in this imaginary conversation?

Three cheers for Jonathon ( and one hundred and three cheers for his foster mom)

2011-12-03T23:32:00.000-08:00

Jonathon is really settled in his foster family, and it shows in his development. Since he became part of a family, Jonathon has gained the courage to try eating proper food. This is a HUGE step. There was no way anything other than a bottle full of Pedisure was going anywhere near this boy's mouth. Even in play, he didn't like anything in his mouth. And a spoon - that was absolutely forbidden by Jonathon. He did not like a spoon anywhere near him.
His foster Mom, Rachel, decided to work on building trust first ( there's that word again - so important). Gradually, as their relationship strengthened, Jonathon became more willing to give things a try. Before long, he was taking all sorts of pureed goodness in that bottle of his. His diet looked super healthy - but it was still all pureed, and still all via the bottle.
Now he's taken the next step forward. Slowly he has shown an interest in finger food - little bits of tasty goodness that allow him to explore what his mouth can do. He's finding out about taste and texture and realizing that it's good fun. And now, he has eaten a whole bowl of rice cereal from a spoon! And Rach says she doesn't even need to coax him - he just opens his little mouth as if he has been doing this all his life. What a rock star!
It just goes to prove a point - babies thrive in families. For anyone who is thinking about fostering or adoption, please nurture that thought. There is just something about families that make them the absolute right place for children. Jonathon's progress proves that!
In fact, this is what gives us our motivation for our second hospice. We want it to be a community hospice for critically ill children with their families. We see the way grief magnifies our children's problems by a thousand-fold. They are trapped by grief for their families; families who have been overwhelmed and made the terrible decision to abandon. Imagine if these families can get support and information before they reach that point - we absolutely believe that with some-one to walk beside them, some of these families will stay together. Now that's something to aspire to!
By the way, you might want to hop over and give Rachel and Drew some encouragement. They've had a challenging time lately with Drew being very sick and Rachel caring for three wonderfully busy boys alone. And while you are there - you can check out Jonathon's progress.
drewandrachel.blogspot.com
Thank you Drew and Rachel, for loving our boy so well.

He's home!

2011-12-01T12:50:00.000-08:00

Finlay is home again, and we are so thrilled that he is back. Last time he arrived, it was to die. This time, he is arriving to LIVE!

He looks very tired after his big journey and even a little shell shocked. Poor Finlay has had a lot of change in the past few months. He came from the SWI to Butterfly Home, Then just as he settled in, he was off to Shanghai. His surgery was an incredible blessing, but major surgery is traumatic, even for big people. For a little baby struggling with change, it's a very big trauma.

Lots of our goals for him now are emotional ones - it's all about trust, trust, trust. Does that sounds like a recurring theme around here? We love medical miracles, but our kids are hurt children and they need miracles of the soul too. We look forward to seeing Finlay open up and let us love him, and we can't wait to hear another little boy's laughter ringing through this home.

Thank you so much to all who have made this story possible. If you would like to donate to Finlay's medical fund, please contact us. info@butterflych.org

Party time.

2011-12-01T04:34:00.000-08:00

Recently William and Paul both celebrated their first birthdays. You would never guess they are so close in age if you glanced at them side by side. Paul is developing typically and he is learning new things every day. He's robust and active, with an appetite for fun and food.
William on the other hand struggles with the smallest things. He's had stridor and difficulty breathing all his life. His physical development is at about the level of a 3 month old - he can't even hold his head up properly yet. The hard truth is that there are a lot of things William will never do. We know he might never run or jump or kick a ball - but that doesn't mean he can't take centre stage when he is the birthday boy!
And it was an extra special celebration for our William on party day. He actually managed to eat some of the very extravagant birthday cake. It was a wonderful moment, as this tiny guy usually takes all his calories as liquids. Maybe he just got caught up with the excitement of the party and had a wild and crazy moment. Or maybe this is a sign of things to come. We will take it either way - we love celebrating our kids achievements, big or small.

It was a great party. The cake was over-the-top (though over-the-top is standard here - you'd think we would get used to it). The kids were all excited and the grown ups were just a bit giddy too. Birthdays always make everyone feel a bit emotional. After all these kids have been through, it's a real privilege to able to honour our precious one year old boys on their birthdays.

Here's William, getting comfortable and enjoying all the action.

A difficult decision for Paul - he has food, presents and a balloon. What to do first?

There seems to be a bit of a theme in Paul's pictures. Let's just say he was happy with the catering arrangements. You might notice that the ayis are always willing to keep his spoon topped up. Food in this culture is very closely linked to love. Feeding some-one is not just a practical task - it's a way to show love. Paul's ayi is not only making sure he doesn't leave the table hungry. She's showing him that she loves him very much.

Poor William - this is not his best angle, but it was too cute to leave out. Apparently having a giant Pooh Bear hovering over you takes a bit of getting used to!

Soon Finlay!

2011-11-29T14:43:00.000-08:00

We have had news that Finlay will be on his way home very soon. He has been cleared to travel and should be arriving here very early Thursday morning. We are still so amazed and thankful for his healing.

Just last month, this little boy was facing a sad reality. He could only expect to get gradually weaker, until his body could not cope any more and then he would die. We were prepared to stand by him through that journey - to love and support him no matter what the outcome. We would have make sure Finlay was wrapping in tenderness every moment and that he never had to suffer alone.

But how wonderful when the story is rewritten! How exciting that now we get to watch him grow stronger and start to enjoy being a little boy! We look forward to encouraging his development and seeing him discover things he never noticed because he was so sick. This little boy is going to have more energy, he is going to be be more alert, and he is going to be making up for lost time. I think Finlay will only continue to amaze us!

Please keep him in your thoughts as he travels - it's a big journey for a little guy who has recently had major heart surgery. We will feel very happy when we finally get him back here and we can wrap him up in cotton wool for just a little longer! And we can't wait to kiss those pink fingertips and see the difference in him for ourselves.

We are still short on funds to cover this miraculous surgery which has restored Finlay's hope, but trusting there will be provision for this. If you would like to share in giving Finlay the best Christmas gift ever - LIFE - please contact us.
info@butterflych.org
And we will definitely be posting pictures when our cute boy arrives back. Stay tuned.

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Even Butterflies like junk food.

2011-11-28T03:55:00.000-08:00

Of course, we don't give our Butterfly babies junk food every day ...only healthy, nutritious food for our little ones. BUT every kid needs a treat now and then. So, when the weather was perfect for strolling, Alan, Lana and Ayi took Hannah, Angel and Jesse out for a lunch date to KFC. Here they are, just setting out from the SWI.

The children look as if they don't realize what yummy delights are in store for them!

Angel soon worked it out. She decided that popcorn chicken was just delicious. The popcorn chicken is very spicy here by the way. There is much more "kick" in the flavour. KFC also make great iced coffee for the grownups. (Just a tip in case you visit and need a coffee fix.)

Hannah looks like she is waiting for something.

OK - perhaps she is really here for the ice-cream.

Angel realizes that ice-cream gets in faster if you enlist a grown-up to operate the spoon.

Little faces covered in ice-cream are just so cute!

Jesse enjoyed his ice-cream too.

And a few quick photo opportunities on the way home.

It's so important for the children to get out and about in their community. Learning about new places and having fun treats is all part of childhood, and we don't want our kids to miss out on these experiences. It's also great for the community to engage with our kids. They get to see these precious little faces, and enjoy the sound of our sweet children's laughter. And who knows - those little interactions might just be changing hearts!

Finlay update.

2011-11-26T20:43:00.000-08:00

Please keep Finlay in your thoughts today. He's been moved out of intensive care, which is fabulous. But now the poor little boy has a chest infection. That's not good news when you are still in recovery from a very large heart surgery. We are still hoping to have Finlay back with us in about ten days, but he does need to get over this infection without any complications. Thank you to his friends all around the world, for holding Finlay up through his recovery.

Pink is for girls - right?

2011-11-26T01:30:00.000-08:00

I know we have been celebrating Finlay's pink lips and fingertips .... but some of our other boys are pretty in pink too. It's a cute cultural difference that pink is not necessarily a girls colour here. Nor is purple. So be warned - if you come for a visit, don't ever assume that a baby all dressed in pink or purple is a little girl. Our ayis lovingly pick out clothing for "their" babies - making sure they fit well, and look cute and cosy. But colour has nothing to do with the selection process, as you can see!

Here is handsome Jonathon, before he moved to foster care. He is looking dashing in candy pink.

And here is Paul in sweet pastel stripes. You might notice that he is eating his snack with relish - this is typical Paul! He loves his snacks!

This one shows little William, enjoying a tender moment with his ayi. On this day, he was wearing a soft fleecy pink romper, and looking very cosy in it.

And this is such a cute shot of William with Paul, Hannah, Swallow and Angel. It especially makes me smile to see Paul's wonderful purple vest.

So next time you see a referral picture of a baby boy in pink or purple - it's probably not because there weren't any other colours available. Babies wear any colour at all here, and they always look cute!

Fun with sweaters.

2011-11-24T20:37:00.000-08:00

We have been gifted with some beautiful hand made sweaters to keep our precious Butterflies warm and cosy. Now that the air is really starting to get a cold winter edge, it's time to pull all those sweaters out of storage and sort out them out for the children. Miss Hannah came along to give assistance.

She is being very sweet and helpful, but there is a little glint in her eyes that shows she has come up with an idea for some fun.

This is definitely a cheeky look - she has something on her mind for sure!

So Hannah has decided to wear four sweaters herself, and to give her dolly a nice outfit with a hat and a warm sweater.

It's so good to see Hannah enjoying being silly. All our kids have medical needs and of course, it's very important that they get the treatment they need. But sometimes laughter and the freedom to be silly is just as important as medicine.

And thank you so much to all those who have lovingly knitted for our little ones!

Gentle Jesse

2011-11-22T18:14:00.000-08:00

Jesse's cot is called Gentleness, and it seems to be very appropriate. It has taken a very gentle approach and a lot of love to help Jesse find his confidence. You see, Jesse came to us after having lost his sight. His world was plunged into darkness and everything was changing for him. He was thought to have tumours in his eyes, but this proved not to be the case. However his eye disease, whilst not threatening his life, has destroyed his sight forever. You can understand why Jesse was afraid and unwilling to trust.

Gradually, gradually, Jesse has come out of his shell. He really enjoys human contact, and especially touch and talking. These are the types of interactions which mean a lot to him now - he cannot see the people around him, so he needs to hear and feel them. He is not longer afraid of the other children, and he even seems happier to interact with visitors. If you spend time with him, he will search you out with his hands, and then keep his hand on your lap. That way he always knows where you are. Jesse's fear has delayed his development, but now he is starting to make progress again - learning to babble and building up some strength in his arms and legs. He is using his hands much more to explore the world he lives in. It takes courage to reach out into darkness, so Jesse needs a lot of encouragement.

We love this gentle little boy. He has so much potential, and we see it shining from him more and more as his fear is chipped away. Jesse now needs a home where his wonderful potential can be realized: a place which is loving and kind, and where they are well equipped for teaching blind children. Bethel Home for the Blind is able to take on new children only with sponsorship - there are so many who need their help. We hope that some-one will step forward to sponsor little Jesse to go there. We feel sure it is the best place for him, and this little guy deserves the very best.

If you feel able to help Jesse, please contact us: info@butterflych.org

Home for Christmas?

2011-11-22T03:20:00.000-08:00

We are really, really hoping that Angel will be going home for Christmas.

And it looks like she might be excited at this thought too!

Those eyes.

2011-11-20T20:30:00.000-08:00

Paul has such soulful eyes. He is usually smiling, so they are often scrunched up in a merry grin. But this picture shows his soulful look perfectly. Such a precious little boy.

We are so thankful that he survived his rough start to life. He brings lots of joy to our Home with his antics. One of his favorite things to do is to pretend that he is on the telephone. He babbles away, just like he is having a real conversation. He's definitely an imaginative little boy.

Soon we will be celebrating Paul's birthday. It will be a time to rejoice in his life and enjoy the happiness he shares with everyone around him. But we will stop a moment too, and think of the things he has gone through in his first year of life. As well as a playful nature and a great imagination, this little boy has shown courage and resilience. Perhaps that is what is reflected in those soulful looks he sometimes gets. We are so proud of you Paul. We know it's been a tough year in a lot of ways, but you have grabbed hold of life with both hands. We can't wait to celebrate with you!

Finlay looks good in pink.

2011-11-18T21:12:00.000-08:00

We have photos of Finlay from last week to share. Look at the colour of his sweet lips.

He is being given oxygen - that's the green tube in his nostrils - but his colour still looks so much better. Those lips are almost rosy. And it looks like his hair has grown too. Anyone know if better oxygenation promotes hair growth? Maybe there's a thesis in that for somebody.

His cute personality hasn't changed, as you can see by this picture. Not sure what he's doing with that phone - maybe he's trying to call and tell us he's ready to come home!
Not yet Finlay. Since these pictures were taken, he's had another very large surgery to correct the transposition of his great arteries, and repair the large hole in his heart.. Right now he is still being ventilated, and looking a lot less perky. But hopefully it won't be too long, little buddy - we can't wait for you to come home either.

Little Miss Sunshine

2011-11-17T18:40:00.000-08:00

Anyone who has visited Butterfly Home will agree that Annie is our resident ray of sunshine. This little girl laughs at just about anything. She hardly ever cries - if you do ever hear her crying, you know something is really upsetting her. Most of the time, her face wears a beautiful broad grin.

Annie's joy comes from interacting with the people around her. Her communication is limited by her cerebral palsy, but she makes great eye contact, and babbles away to you as you talk to her. She loves to be touched and you can see her eyes light up as some-one sits down to play with her. Annie can't move herself to get closer to people, so she relies on people taking the time to come to her.
In our world, people like Annie often get overlooked - you have to slow down and take an extra moment to reach out to them. But what a delight it is to take that extra moment for Annie. Just one flash of her super smile, and little day-to-day worries fly out the window. Those moments make a difference - to Annie's heart and to ours. Annie is learning that she is loved without reservation, and we are learning to look beyond a little girl's label and see her for the treasure she is. Children like Annie enrich our world, and we are full of gratitude that she is here.

When Annie arrived, she didn't smile so much. Her body was wracked with spasms and she was constantly in pain. It's not an exaggeration to say that her feet used to touch the back of her head.A child's body isn't made to be in that position, but Annie's muscles were so taut that her poor little body was pulled back like a bow. Its unimaginable how much that must have hurt.

Today, Annie still has cerebral palsy, causing muscle rigidity and very reduced motor control, but her terrible spams are mostly controlled. It is so wonderful to see her coming out of the fog of pain, and watch her her sparkling personality blossoming. She's valued for who she is and she is responding with her whole heart. It's a hard truth that not all children can be healed, but we know it is our calling to love every child, and cherish every life. Children like Annie remind us daily what a joyful calling that is!

Finlay's second surgery

2011-11-15T23:33:00.000-08:00

Wonderful news from Shanghai - we have a report today that Finlay's second surgery has been successful. At this stage, it looks like his left ventricle is holding up to the new workload very nicely. We are so hopeful that this will continue to be the case, and that Finlay will have a smooth recovery. Oh, how we look forward to welcoming this little boy home again - not as a child with no future, but as a little boy with the world at his feet! We feel sure there is a family somewhere out there who will one day get to call this miracle boy their own. What a story he will have for them, and how happy we are to be a part of it. We are so thankful for those who have helped with the medical costs for these procedures. You are part of this story too, and your help has given back a little boy's life.

Linda, Finlay's ayi, is exhausted and missing home, so she has returned for a break. Finlay is now being cared for by Peng Ayi. He already knows her well, as she looked after him at Butterfly Home and he is very comfortable with her. Our thoughts are with her as she gets used to a new routine in a new city. It's not easy being far from home in stressful circumstances and we are grateful for these courageous women who love Finlay so much that they are willing to give of themselves in this way.

Please keep little Finlay in your thoughts - his body still has a lot of healing to do and he is continuing to struggle with pain. We also need further donations for the surgical expenses. Contact us if you are able to help to meet this need.

Big Sister Hannah

2011-11-14T14:32:00.000-08:00

Hannah is one of the older kids in the Home. She was two years old when she arrived, and had only recently been abandoned. As you can imagine, she was shattered. It's taken some time for her to gradually feel safe and show her personality. Now we are seeing a bright little girl who has a naturally caring heart. It's the sweetest thing to watch her loving her Butterfly brothers and sisters. She enjoys her role as the big sister of the Home, and is very tender with the younger ones.
Here she is giving Annie some fun in the pusher. Annie is definitely enjoying herself, and Hannah is pretty happy too.

And if you have traveled here, you will have seen these wonderful brooms. Hannah loves to be a big girl and help out - take a look at the pile of leaves she has carefully gathered. What a great kid!

Autumn days

2011-11-12T16:05:00.000-08:00

The weather in our city is a little ....... extreme. In summertime every day is hot, hot, hot. Not only hot, it's terribly humid. You have to drinks lots, because you sweat lots. I know - it's not very polite, but it's a fact of life if you live in this city.

Then in wintertime, suddenly it's freezing. You find yourself rummaging around for all that really unattractive thermal underwear which you NEVER imagined you would need again. Your breath comes out as a frosty cloud, and that's even before you go outside.

So springtime and autumn are welcome relief from the two extremes. And right now, we are enjoying the pulse of a more outdoorsy routine. Lots of walks in the pushers, lots of swinging, lots of relaxed autumn days. I think you can tell from the pictures that the babies enjoy it too.

Finlay's progress

2011-11-11T16:54:00.000-08:00

We are excited to report that Finlay is continuing to improve. Of course, recovery from heart surgery was never going to be a walk in the park, especially when you are just a baby. But the little guy is up for the challenge, and his ayi is right there supporting him through everything.

He is out of intensive care now, so we celebrating that step with thankful hearts. Unfortunately he is still having some trouble with pain and it's making him a little fretful. His ayi is finding that he is most comfortable in her arms. Lots of gentle touch seems to help to soothe him. I guess just like all of us, he needs to know that he is not alone.

At this stage, he is still on schedule for his second surgery next week. What a miracle for an inoperable child! Please join us in thankfulness for the great progress so far, and hope that his pain will be managed well. We will let you all know when his next surgery is scheduled.

Look at those lashes

2011-11-10T16:43:00.000-08:00

I think most of the world would agree that there is nothing sweeter than a sleeping baby. Just seeing them resting, safe and relaxed, is a little miracle to enjoy every day.

At Butterfly Home, we can't ever forget the traumatic stories some of our children have. They are very sick children, often shattered by recent abandonment. Its nearly impossible for them to find rest. When they arrive, their sleep is usually fractured and tense. Their little bodies are wracked with pain and their hearts are confused. For some children, even breathing is a struggle. It's just heartbreaking to watch a baby who cannot even sleep peacefully.

That's why we don't take a sleeping baby for granted. Watching them sleep actually fills us with incredible joy. We are just so thankful that they are secure and happy enough to drift into total abandonment.

And would you look at those lashes! Just beautiful.

And of course, Little Swallow's eyes are just as lovely when she's awake!

New haircut!

2011-11-07T16:38:00.000-08:00

Dear little Sarah has a new haircut, and suddenly she doesn't look like a baby anymore. She's had her hair trimmed a few times before, but these bangs definitely make her look all "little girl". It's amazing how a haircut can make a child look so grown up!

Sarah is a party girl, with an engaging nature, and a talent for socializing. Her left arm has some nerve damage which makes it weaker than her right, though she doesn't seem to find that a problem. Twice daily she has physio sessions to help her work on new skills, but actually this little girl is pretty motivated to keep working all through the day. If there are fun and cuddles to be had, Sarah will get herself there.

She's always happy to see YeYe Alan, because she knows she can count on him for a game and a giggle!

Good news from Shanghai

2011-11-03T16:18:00.000-07:00

We are thrilled to be able to share that Finlay's first surgery has been a success.

Before the operation, the surgeon even suggested that the whole repair might be done at once, with no need for further surgeries. While that sounded great to us, it isn't the way things have worked out .... but we are singing from the hilltops anyway!

Our little guy WILL need a second surgery, but he is already looking SO much pinker after the first one. Of course, he is a small boy recovering from a big surgery, so he is not exactly up and out of bed right now. He is sporting some pretty unfashionable looking ICU wear - namely a lot of tubes and drains. But there is a flush of colour coming back into his fingertips, and those little blue lips are on their way to becoming positively rosy. His ayi tells us that pink looks pretty good on him!

At this stage, the surgeon is sounding very optimistic. He even hopes that the second surgery can be done in about 2 weeks. This is much faster than some of the earlier estimates. We are pleased about this, but we still understand the need to let Finlay's body heal before planning too far ahead. It's important to allow his heart time to respond to the new plumbing arrangements.

Finlay's ayi is doing well too. She adore this little boy, and is excited for the new hope in his life. Even so, it's hard to watch some-one you love go through major surgery, and it's hard to be in a big city so far from home. Keep Linda in your thoughts in the weeks to come - there is still a long road ahead and she knows she needs to stay strong and cheerful for Finlay.
We still do need to raise funds to cover Finlay's operations. Please contact us by email if you would like to help: info@butterflych.org

Nurse Catherine is in the house.

2011-11-02T19:12:00.000-07:00

We know everyone is hanging on for news of Finlay at the moment, and don't worry....we will be updating as soon as we can. Scroll down for his story if you need to catch up.

But while Finlay is awaiting surgery in Shanghai, life goes on back in the Butterfly Home. This week, all the babies are enjoying the return of Nurse Catherine. Catherine has volunteered at the Home before - twice ! Can you tell she has a soft spot for these babies?
Catherine is from England. She has a taste for adventure, a love of travelling and a servant's heart. Mix that up with a wealth of experience in paediatric nursing, and you have a whole lot of blessings for our babies.

Here Catherine is attending to dear Ben. He doesn't look too thrilled at this moment, but he is surely happy on the inside to have such skilled hands to treat his problems!

Volunteers are such an important part of our work here at The Butterfly Home. Some come for a few weeks, while others for much longer. Some go to extra-ordinary lengths to get here - we just have to make mention of Lana's arrival. She's volunteering with us for a year, and travelled by bicycle all the way from Hangzhou, raising funds along the way. That's dedication!
Whatever way they get here, volunteers bless us all with their time and talents. Precious people choosing to share their gifts with our fragile little babies - it doesn't get much more encouraging than that!. Of course, our need for medical expertise is always high - if you are a doctor, nurse or therapist, we suggest you hop right onto the next plane to China. (But contact us first, of course - so we can make the necessary arrangements!).
You'd also be surprised how helpful other skills can be to us. Can you do repair work, or paint a room? Can you take beautiful photographs? Can you organize a storeroom, or cuddle a baby? Can you file paperwork, or make scrapbooks? All you need is a flexible attitude and the ability to cope with just a little bit of the unknown. And the best bit is, that these babies will bless you just as much as you can bless them!

What's up with Finlay? (now updated with pictures)

2011-11-01T00:21:00.000-07:00

HOPE - that's what's up !

We are so excited to find out that Finlay is not inoperable after all. Of course, there is still a long way to go for this our little guy, but we are choosing to celebrate each step. And right now, we are celebrating HOPE.

Finlay's condition is a transposition of the great arteries. This is a serious situation, and in a perfect world, his heart would have been operated on at birth. Sadly, we all know the world is not perfect (yet), and now Finlay is almost a year old and still without surgery. The abnormal way that blood flows around his heart and lungs means the left side of Finlay's heart is underdeveloped and weak. So his heart repair has to be done in 2 stages. The first stage is pulmonary artery banding and a shunt. Then he will be given some time for his left ventricle to build up strength, before a second operation to switch the blood vessels to their correct positions. The time between surgeries could be as short as two weeks, or it could be more like three months. And his heart muscle will need to respond well for the second operation to even be possible.

Finlay's first surgery will be later this week, perhaps Wednesday or Thursday. Please stand with us as we ask for healing for this little boy. It is our great hope that he will recover strongly from this first surgery, and that his little heart will respond properly, thus allowing the second operation to go ahead. The surgeon has stressed to us how dangerous this procedure can be, so we are especially asking that our friends around the world hold Finlay in their thoughts this week.

We are thankful for the surgeons in Shanghai, who are willing to give him this chance, and the SWI, who also want to see him healed. The estimated costs we have been given for the two stages of the repair are around GBP 10 000, or around US$15 000. It's a huge amount of money, but we are trusting that there will be provision for these expenses. If you would like to be part of the gift of life for Finlay, please contact us or donate via the website.

We hope to be updating Finlay's story with news of his Stage 1 operation soon!

UPDATE: Finlay's ayi has sent these pictures and we couldnt wait to share them.

Doesn't he look cute? There is more than a dash of mischief in this little boy.

His blue lips show how much he NEEDS this surgery. He has already been waiting too long.

Uh-Oh. I think this might be the look he gives when he is tired of having his picture taken. But even when he's grumpy, he's still handsome!

Rock on Paul!

2011-10-30T23:19:00.000-07:00

Paul is such a joyful, full of life type of kid. His cheerful nature is like a tonic to everyone around him. He has one of those that happy-go-lucky, "can do" personalities which immediately lift your spirits, even if it's been a really challenging day. How could anyone look at that face and not smile right back?

He looks like he's rocking out on the bongo drums here, but he's actually using an upside-down bin as his own personal walker. He can walk 5-6 steps on his own now, but he has worked out this method for long distance travelling. Paul takes the saying " Where there is a will, there is a way" very seriously. If he needs to go somewhere, reach something, find someone or get his point across, he will find a way! Sometimes his solutions are quite creative, as you can see - maybe he has a future as an engineer?

Although looking at this face, perhaps rock stardom might be his career of choice. This guy is just too cool!

It's such fun watching Paul shine. His condition when he arrived was so frightening that it was hard to picture him surviving even a week. Now he's bubbling with personality, and he loves being the life of the party. Of course, we all love it too!

Together Again.

2011-10-27T00:26:00.000-07:00

Butterfly Children's Hospice has been open since 2009, but Lyn and Alan Gould have been giving their hearts and lives to the care of palliative care children in China for over a decade. Their task has been both heartbreaking, and beautiful - even though it doesn't seem possible to put those words together. Sometimes the sorrow seems overwhelming, and other moments are full of indescribable joy.
This is one of those joyful times ....in July this year, Lyn and Alan visited Australia to speak about the work with palliative care professionals, and to meet with supporters. During the trip they were able to pay a visit to Ruby.

Ruby was born prematurely and not expected to survive. She was placed into Lyn's arms six years ago, weighing only 1.5kg and looking like a tiny doll. For five weeks, she slept right beside Lyn day and night. When she got stronger, Lyn said goodbye to her, hoping that the teeny-tiny baby would grow into a happy child with a bright future. But she never expected that they would be re-united!
Yet here they are, on Australian soil, with such a lot to catch up on. Lyn and Alan spent the morning at Ruby's school, and spoke to students and staff about the work in China. Ruby was delighted to introduce her friends to NaiNai and YeYe, and see her China life interconnecting with her new life in Australia. And once again, we were all reminded that there is hope for every child.

Finlay is on the move

2011-10-20T14:06:00.000-07:00

Our newest little butterfly, Finlay, is on the move. He has only arrived recently and his severe heart condition is supposed to be non-surgical. When he was smaller, doctors felt that any operation was too risky and unlikely to be successful. He was given no choice but to wait....wait until his little heart couldn't keep up with the demands of his body for oxygen anymore.
But Finlay kept fighting, and slowly his little body grew. He's been sent to us for palliative care, but something tells us he is not quite ready for that yet. He's bigger now, and trying hard to learn new things, even though he gets short of breath very quickly. Eating is a new skill for him - until a few weeks ago, he took all his calories from a bottle. Now he is discovering taste and texture. Just like any little boy, he's a bit of a food critic. Some tastes are a hit, and others ...not so much! But he's keen to keep trying and his body is responding beautifully to the great nutrition he is getting. He even looks a little bit mischievous these days.

On Tuesday, he left with his ayi for Shanghai. They travelled on the train and Finlay was a little trooper. He will be examined by a cardiac team there, and we are hoping like crazy that they will have good news for us. Regardless of the outcome ... we just know this little boy deserves every chance. Too many people have given up on Finlay already.

We need to raise the funds to cover Finlay's chance at healing. The costs of his medical bills and travel expenses for this trip will come to 5000rmb ($785 USD or 500GBP), and we are hoping for support to meet that need. You can email us, or donate on the website if you would like to be a part of Finlay's story.

Sweet Swallow

2011-10-18T20:22:00.000-07:00

We challenge anyone on earth to resist Little Swallow's grin! She has a gentle and tender nature to go with her adorable smile, which quickly endears her to the regular visitors at Butterfly Home. She’s a little shy though, so don’t expect this greeting if you are new. You have to take some time, and win her affection before she will let down her guard. It just makes the smile all the sweeter to know you’ve earned it!

We are all so proud of Little Swallow. Her core strength is building every day, and she can sit up quite sturdily without support now. That's an important milestone for a spina bifida kid. She's mobile too, and it makes her very happy to be able to commando crawl across the floor. With the help of her therapy sessions, she's quietly figuring out how to make the most of her body's abilities. She's the kind of kid who not going to let anyone set limits for her. She'll get there in her own time, in her own sweet way, and with a smile that will simply melt your heart.

The Three Musketeers

2011-10-15T19:40:00.000-07:00

Just in case anyone was wondering how Jonathon was adapting to life with his foster family, we thought we should share these pictures.

His smile tells the story – this is a little guy who is embracing life. Hard to believe it’s the same little boy who arrived at the beginning of the year with a mighty headache and a bleak outlook. Finding out that his brain tumour was actually an untreated infection in his skull gave us hope for Jonathon. After surgery and time to recuperate, just look at how that hope has blossomed.

He is full of life and full of mischief, and obviously loving being a part of this cheeky threesome with his foster brothers. We have to add that we are just a little in awe of Rachel! What a supermom to be keeping up with three dynamic little boys day after day. They are just so cute; I guess that much cuteness in your life makes up for a certain amount of weariness at the end of each day.

Thanks Rachel and Drew. You are giving Jonathon a wonderful gift by welcoming him into your family. The love that you are sowing into his life is a powerful magic, and Jonathon is thriving on it.

Neighbourly Love

2011-10-13T04:52:00.000-07:00

We are so blessed by friends who help us from all around the world. We have supporters in the UK, Australia, USA, Singapore, Canada and India, just to name a few. But we also have incredible support from right here – our neighbours and our friends.
One company recently sent a wonderful donation of 24 boxes of milk powder and some beautiful toys. When we phoned to give our thanks, the lady who answered the telephone wept with emotion. She has a heart for our kids, and an understanding of all they have overcome. The company has pledged to send us some nappies, and this lady is hoping very much to visit. We are very grateful for such compassion right here where we are working.

Another kind hearted lady who owns a clothes factory has happily donated some great baby clothes. She visited with us, and had hoped to meet with Eve – but cheeky Eve is home in Europe now and keeping her new family laughing. So our visitor enjoyed her time meeting and playing with the other children. It was a joy to meet with her, and we are thankful for her kindness.

Other donations keep coming in from people all over the country. We have been touched by a generous gift from a couple who live in Beijing, and another from doctor who works in Guangzhou. Regular donations arrive from many different provinces. It means such a lot to know that our neighbours here really do care, and want to help the children any way they can. Thank you so much!

What's in the box?

2011-10-06T22:27:00.000-07:00

Lovely Angel is matched with a family, and everyone is waiting hopefully for the day they can travel to China and meet their new sweetheart. We'll all be a little broken-hearted to say goodbye, but that sadness will be quickly put aside for the joy of knowing Angel has a family. How wonderful it will be to see her in the arms of the people entrusted to love, protect and encourage her forever. This little girl is something special, and with her family to cheer her on, she is going to live an amazing life.
Of course, before that exciting day when Angel and her family will finally be together, there is lots of paperwork to be done. And lots of paperwork means lots of waiting. Thankfully Angel is very happy here, and we hope that brings her family peace as they conquer the paperwork mountain. And in the meantime, parcels are a wonderful way to show just how much they love her! Here are some pictures of Angel getting a parcel just this week. You can see that she feels really special to be the recipient of such a box full of love.

"Wow - is this really for me?"

"It is? From my family? I feel so special."

" I could do with some help reading the card though - I'm very smart, but I can't read English yet."

" I just love my new dolly"

" Look - my family! I can't wait to meet them."

" Hey Paul, have a look. I think it's nearly empty. Take a peek."

"Yep, it's empty now. But the box is pretty cool - lets play!"

And finally, a little girl sleeping, surrounded by gifts from her family and tucked in by her ayi who loves her. Safe and secure - this is what it's all about.

Hallo Finlay

2011-10-01T07:15:00.000-07:00

Jonathon is settling in wonderfully with his foster family. It’s great to see him learning new things every day and soaking up the love which surrounds him. Being fostered by an incredible family is the best preparation in the world for the day Jonathon is adopted, and welcomed into his own family forever.
Jonathon moving into foster care is also great in another way. While he enjoys the benefits of family life, his cot at the Hospice is now open to another child who is truly in need of specialized care.
So, this week we say hallo to precious Finlay. He is a lovely child, with a complex congenital heart condition. At only 9 months old, his eyes already reflect the trauma he has experienced. When he was 3 months old, he came to the SWI after being abandoned. Not long afterwards, he made the long journey to Beijing with orphanage staff for a cardiac assessment. Sadly, hopes for restoring his health were shattered when the surgeons gave him little hope for survival. Now he has come to us, and we have welcomed him with open arms.

He really is a sick baby. There are many times when his breathing is laboured and it’s hard to listen to him struggle. And yet – he wants to reach out and connect with the people around him. He’s alert and he smiles when you talk to him. He enjoys being cuddled and he seems to like watching TV. His first meal at Butterfly Home was lovingly prepared by Daphne, and Finlay appreciated that delicious and healthy food. His heart may not be functioning as it should, but this little boy is so much more than a heart condition.
We can’t see what lies ahead for Finlay – like every one of our kids, he will write his own story. We do know that we will do whatever we can to help him – starting with a second opinion about his heart. We want to explore every option for our newest butterfly. This time, we’ll be talking with doctors in Shanghai. We’re hoping for good news of course: a better prognosis, and a medical team willing to operate. But no matter what – we will treasure Finlay and show him every day that he is loved. His sweet smile will lift our hearts, as we hope and pray for his to be healed. Stay tuned …. Finlay’s’ story is unfolding.

2011-09-30T23:07:00.001-07:00

INTERNATIONAL CHILDREN’S PALLIATIVE CARE NETWORK

Media Release: Touching Rainbows – Acknowledging the Child’s Voice in Palliative Care

To mark World Hospice and Palliative Care Day 2011, with Voices for Hospices (8 October 2011), thousands of people in around 80 countries will be coming together at more than 1,000 events to celebrate, support and speak up about hospice and palliative care.

This year’s World Hospice and Palliative Care Day theme is ‘Many diseases, many lives, many voices –palliative care for non-communicable conditions.’

The ICPCN decided to use this day to launch its new book ‘Touching Rainbows - Acknowledging the child’s voice in palliative care.’ Through this book we have the
privilege of hearing the voices of some of the many children whose lives, and those of their families, have been affected by life-threatening conditions.
The children tell their stories with honesty and openness, through stories, poems and pictures.
Children and their families from across the world share their experiences, either from the child
themselves or, when their own voice cannot be heard, from those who love them, such as their parents or brother and sister.
The stories, told in the child’s own language wherever possible and with an English translation, are an inspiration to us all. It is hoped they will touch and enrich the lives of many, encourage those travelling a similar path, and instill a sense of courage and joy, despite the many challenges and heartaches. These children and their families pass through many storms and dark days, but still aspire to reach our and touch the light and joy of the rainbow.

The Foreword is written by Sr Frances Dominica, the Founder of Helen and Douglas House, and of the modern children’s hospice movement.

Copies of this book will be distributed around the globe for advocacy purposes and can be bought through the website.
All proceeds from sales will be used for the printing of further copies.
To purchase your copy, go to: www.icpcn.org.uk

For further information contact Sue Boucher sue@icpcn.co.za ; Joan Marston joan.marston@icpcn.co.za or Barbara Steel admin@icpcn.co.za

Linked to the book “Touching Rainbows” and for World Hospice and Palliative Care Day will be the release of a short video on “Paediatric Palliative Care”
A film on Paediatric Palliative Care is film 21 of 50 in the LIFE Before Death documentary series about the global crisis in untreated pain and the dramatic life changing effect palliative care services can deliver to patients and their families around the world. In this short film we discover that the barriers to paediatric palliative care are very complex and children’s pain is often under treated. We learn that providing good care is crucial to the quality of life for the child but that support needs to be extended to the whole family.
“I think that in the paediatric population pain is more frequently under recognized and under
treated than it is in the adult population, though the medications are available, sometimes the
training for physicians is a little bit inadequate and physician’s feel unsure in their ability and concerned about the medications,” reflects Dr Kim Bower (USA).

Joan Marston recounts the story of a young girl with severe pain and with a neuro-degenerative condition being denied the amount of morphine she needed for pain control by a pharmacist who felt she must be an addict until he actually went to the girl’s bedside to see for himself, only to realise how wrong he was.
Hear this and other stories of children’s lives being changed by
accessing palliative care.

Featuring:
Dr Kim Bower (USA)
Joan Marston (South Africa)
Dr Henry Ddungu (Uganda)
Jareal Bantilan (Singapore)
Jessica,Hendra & Esther (Indonesia)

50 Short Films have also been
produced which are being released
at a rate of one per week, they are
currently available to watch at:

www.youtube.com/lifebeforedeathmovie

Joan Marston
Chief executive: ICPCN
Cell: +27 (0 ) 822964367
E-mail: joan.marston@icpcn.co.za

2011-09-28T23:16:00.000-07:00

This is Jonathon with his new Mum & Dad, they are his foster parents here in Changsha, he will live with them until he is adopted. They also have 2 other boys so he should become a great brother. see more at
http://drewandrachel.blogspot.com

Hong Kong Trip

2011-09-26T22:34:00.000-07:00

Thank you for all your thoughts and prayers, as you may of heard all the tests were done And no surgery needed on Alan, just medication......…its working well now!

We thank you as while we were in Hong Kong we made contact with lots of friends, not all sorry to say, as time was limited and you know how BIG HK is, but we gave some presentations, also had several positive meetings, one meeting we were able to firm up the registration in HK, and should be done this year. Alan will need to return to see the Dr in three months so hopefully we should be able to get a bank account there too.
Lyn had a birhtday there so we started the day with a Starbucks! Only after shutting the door of the apartment we realised we did not have a key! But we continuied on the birthday and had a great lunch at Discovery bay with just about enough cash to get us back home, where Andy had come back from work. So all in all a great time and to top this we struggled to pack as much medicine and milk that had been donated for the babies, we left a case to come up later in the year! How great is that, blessings overflowing!

Thanks & love Alan & Lyn

Hannah's Birthday

2011-09-10T01:39:00.000-07:00

Happy Birthday Hannah

2011-09-10T01:25:00.000-07:00

Hannah - the birthday girl!

The amazing beetle cake.

Thomas

Ysmael

Jesse

Patience

Jonathon

Our family

2011-09-08T20:39:00.000-07:00

ANNIE

JESSIE

WILLIAM

BENJAMIN

HANNAH

LITTLE SWALLOW

PATIENCE

JONATHON

ANGEL

PAUL

YSMAEL

SARAH

THOMAS

Moving in the right direction

2011-09-07T20:53:00.000-07:00

Ater being here for 18 months, Great news at the meeting, there has been a verbal acceptence from the powers that be, we will be registered as the Butterfly Home, 蝴蝶之家（Hu Die Zhi Jia） sounds like (who day jur dhaa) we now after wait for the paperwork, but we feel this is such a big step.
so keep encouraging us please

Cycling For Butterflies

2011-09-05T19:06:00.000-07:00

Welcome to Cycling For Butterflies

Our aim is to raise money for Butterfly Home, a palliative care centre located in Changsha, China. In order to do this we are undertaking a sponsored cycle in central China from the 5th September 2011.

Butterfly Home is dedicated to the care of abandoned terminally ill children. Ranging from only a few months old to their teens, children are brought to the centre with poor diagnosis and limited methods of treatment. Butterfly Home provides the children with basic medications for their individual illnesses, 24-hour one-on-one care, and most importantly gives them the feeling that they are loved. Donations to the Butterfly Home will go towards life saving operations for children in the centre's care, and enable the centre to expand it's life changing community care service for local families.
Cycle Route

The route we have chosen for our cycle is approx. 750 Km / 466 miles, which we aim to complete within 10 day. We are touring central china utilizing only map and compass for orientation. We will mainly follow a section of the great Yangtze River upstream. The Chinese like to say, “If you haven’t travelled up the mighty Yangzte, you haven’t been anywhere”, so there we are - being somewhere. We begin in Anqing, a city south of Anhui Province on the north shore of the lower Yangtze, 500km into mainland west from Shanghai. With the river on one side and mountains on the other we cycle through the Yangtze valley towards Hubei Province. Before the Three Gorge Dam we turn off at Dongting Lake to head south to Changsha, one of the areas devastated by the extensive flooding that occurred in parts of China earlier this year. Our route will end with a knock on the door of Butterfly Home care centre, symbolically handing over the donation

Lana Garriock

When I was given the opportunity to study in China in September 2010 it was an offer too good to resist! 5 days later I found myself registered on a 12-month crash course studying Chinese at Zhejiang University and on a plane to Hangzhou, China. While looking for a more meaningful Chinese experience related to my degree in Research Psychology I came across the Butterfly Home. I found their work inspiring and decided to volunteer at the centre at the end of my studies. After speaking to Alan at the Butterfly Home, I had the (brilliant) idea of a sponsored cycle to raise money for the centre before starting my work there.
Neil Clarke
A good pal is always there for someone who proposes a 700km cycle in a foreign country on the other side of the world. Initially Lana's proposal to cycle Up the Yangtze river filled me with an equal measure of confusion and apprehension, however after reading up on the Butterfly Home and the fantastic work they are doing in China I decided to agree to the challenge. After three months training on the rough and ready roads of Fife, Scotland, I feel prepared for anything even the most irate Chinese lorry driver can throw at me, and the warm feeling inside from all the generous donations you lovely folks are going to give will be more than enough to propel us across the finish line. So dig deep folks, and do it for the kids.

Never an easy life

2011-09-04T19:59:00.000-07:00

This little fellow is Paul. He’s a handsome boy, whose smile will melt any heart. When he is not asleep, he is always on the move. We are hoping that sometime soon he will be adopted. What a joy he will be for a family looking for some extra fun and cute little boy mischief.
Pauls story is one of sadness, healing and redemption.. He came to us at one day of age, urgently needing surgery to save his life. The costs were high, and the money wasn’t sitting in the bank, but we knew we had to respond. He had major abdominal surgery locally, and then further treatment in Beijing. At the local hospital, they recognized him because of his condition, and we were able to learn something of his background. His birth mother was very young and very poor – even with an offer to pay his medical bills, she was not in a position to raise her baby. She made the heartbreaking decision to walk away, hoping for someone else to love her boy.
After some complications with wound healing, Paul has grown to be a cheeky fun loving little guy. He is healthy and affectionate, with a talent for socializing. The scar on his tummy tells the story of his rough start, but his radiant smile is what will carry him into the future. We are looking forward to the day he will be welcomed into a new family, and that young mother’s dream for her boys future will come true.

Paul

2011-09-01T20:34:00.000-07:00

This ia Paul, almost a year old, bright and lots of fun, eats everything! and always up for a game. His paperwork is going forward so he needs a new Mum & Dad too.

Wednesday

2011-08-30T22:52:00.000-07:00

Hi My Name is Sarah.
I have a small problem with my brain, and I was abandoned as a very small baby. Perhaps my first
family was scared, or did not have the means to look after me. My challenges
mean I am always going to need people to care for me.
I am growing now and have fun with my Ayis, I like it when they sing and we can
make a noise too and join in the fun. I like to eat, and they cook good food here
for us every day. We get lots of treats and nice clothes to wear. Some lovely
people have even made warm quilts for us to snuggle in.
I am a happy baby and would love to have a new mum and dad.

I also have lots of brothers and sisters living here with me – together with our
Ayis, we are family to each other. Some days we go out in to the garden and enjoy
the trees, and some days we play at home.

Babies needing a loving home

2011-08-28T20:38:00.000-07:00

This is Sarah.

This is Little Swallow.

This is Hannah.

Each of these girls came to Butterfly Home for palliative care. Now we are working on getting their papers ready for adoption. What a great result. From once being told they had no future, now we look forward to hearing that these precious girls have families who can't wait to come get them. Now that will be a day for rejoicing!

Higher

2011-08-28T19:37:00.000-07:00

Covering The Air Conditioner outside units, Why? so they dont look so bad!
High up all over the Changsha city these boxes are covered with a cheap metal cage, we are in for @the Wonderful City award!

Its Saturday

2011-08-27T00:34:00.000-07:00

Like most days here in China...... there much the same as any other day, the babies need feeding, washing, walking and being entertained. Oh and we get deliveries!
Went out with Hannah today to get some medicines, a lady who cooks food in a little store always says Ni Hao, today she gave Hannah some corn, and Hannah enjoyed it.

Help needed

2011-08-25T22:36:00.000-07:00

Nurses wanted!
Looking for a chance to make a difference?
We have started working in a state run orphanage to care for abandoned children with a life expectancy of under 6 months. Many of these children respond to good basic care and love and go on to live longer happy lives. We are able to give loving palliative care to those whose lives are short.
We are looking for nurses to join us so that we can expand the service to families with dying children to bring them hope and comfort in often desperate situations.

These are voluntary positions and for a minimum commitment of six months we can offer sponsorship to cover the costs of a visa, accommodation, living allowance and language lessons.

For further information please email Lyn Gould at Lyn@butterflych.org
http://www.butterflych.org/home

August 26th 2011

2011-08-25T20:42:00.000-07:00

Today we have been open 18 months and find ourselves in temporary accommodation! We have 13 cots open and unable (due to space) to open more. We moved here from the 2nd Floor of the Butterfly Home some two months ago, we were asked to move with just 10 days notice! Nothing has happened on the floor we did have, just collecting dust and the contractors have now been replaced….were waiting to see what will happen next. We were initially told we would be three months, maybe another six months before we return to the Butterfly Home.
http://www.butterflych.org/home