How do you take a lot of babies for a walk? (and a new blog site!!!)

With a lot of pushers of course!

Warmer weather is on it's way - but as you can see by the layers on our kids, it's hasn't quite arrived in our part of the world. It's still fun to get outside, enjoy the scenery and take a turn on the swings. There is plenty to do, but we certainly don't need sunscreen yet!

With the new season on it's way, we are also about to have a new look for the blog. We will be moving to a fresh  redesigned site - please come with us, and continue to follow the stories of our precious butterfly babies. The new blog has been put together by our bike riding friend, Neil Clarke, and  it's just beautiful. Thank you so much Neil - you have a fabulously varied skill set, and we are so thankful that you share your expertise with us. We will be posting there from now on - so we hope to see you!!

The new address will be  http://news.butterflych.org 

The boys are on the move.

Look at Finlay - up on his feet, and becoming more stable every day. He's gaining confidence  - it's taking time, but he is getting there. With confidence will come strength, and soon we will have another walker in the Home.

And Jesse - wow! He is making amazing progress. He has his own unique style on the walking trolley, but it works for him. He's getting the idea, and he's getting braver by the minute.

SWe are so proud of both our " nearly walkers". These little guys are inspirational. They haven't had anything easy in life, but they have honoured us with their trust, and worked hard to achieve their goals. There have been moments when each of these boys would have prefered to sat still in their own safe little corner, but now they are putting fear aside to explore and learn. I wonder if we grown-ups are half as brave in our own lives?  They might be just little boys, but they have giant sized attitudes.

Cute overload.

Look at this cute grin! You would never guess that Swallow enjoys her bath.

We hope her family are prepared for those big brown eyes. This look is incredibly hard to resist. Can't you just imagine her asking her father for the car keys in 20 years time? He won't stand a chance!

Celebrating Ben.

This past weekend we celebrated Ben's first birthday. In the twelve months he has been on this earth, our Ben has been through more than the average kid. But right now, we are not focusing on the hard stuff - we are just celebrating a sweet funny boy, and letting him know how much he is loved.

Ben seemed to realize that it was his special day, and he just would not settle for his afternoon nap before the party. Thankfully, missing  sleep didn't seem to affect his mood. He helped out by keeping an eye on preparations and supervising the balloon blowing. When the others woke up, it was party time!!

Of course, there was a giant cake - hand made just for Ben.

There were gifts lovingly given.

And this little guy was simply the best party host ever. Wouldn't you like to be partying with a dude as cool as this? Seriously - if the movie stars saw this, they would be ordering great big Bumbo seats, just to try and look as cool as Ben.

The party was great fun. Emily's parents are here at the moment, visiting with her and helping us out. They brought some wonderful musical instruments with them, so we decided to have a music themed party. Emily's Dad played children's songs on his harmonica, and the kids provided percussion to accompany him. There was a whole lot of shaking, banging, clapping and laughing going on. The atmosphere was perfect, and everyone was having fun. Jesse was especially excited by the music, and he loved making his contribution.

Life is such a cycle of emotions - some days in the Home break your heart, and other days make it soar. Ben's birthday was a day to lift your heart skyward. Happy Birthday little dude. You are so special.

Buddies

Love this picture of Thomas and Annie hanging out together. Just two little buddies and one hedgehog relaxing and enjoying each other's company.

Sometimes you could think that Thomas wasn't able to engage much with the people around him, but this picture clearly captures his interest in Annie. He knows she is right there, and his attention is completely directed towards her. Annie's sweet nature is a tonic for all of us, and it seems Thomas is not immune to her charms. The warmth of her smile is the best type of medicine!

Til we meet again....

There are some days which are just hard, and the last few days at Butterfly Home have certainly been hard.  On Thursday night, we said goodbye to our handsome Ysmael.

 This little boy has been with us since he was just two months old. He came to us in pain and severely jaundiced, with an enlarged liver and spleen. He had already faced a surgery somewhere....a surgery which must have been planned with hope, but ultimately did not work. We don't know how, or why, or what exactly happened, but we can imagine the despair his parents must have felt. They must surely longed for their son to be returned to them healthy and whole after his operation, but instead they learnt that nothing had changed.  Their little boy was seriously ill, and would not live long.
We know Ysmael was loved - his parents had tried everything to make him healthy. But faced with a terminal diagnosis, they had few choices. We don't know the details of their story, but clearly they felt there was nothing more they could do. Ysmael was abandoned, and became an orphan.

 

We were so privileged to be able to care for him, to become his family. He was an intelligent boy who was motivated to learn. He had mastered counting on his hand, and was babbling and interested in communicating. He loved his ayis very much. If a stranger came into the Home, he was wary until he got to know them. At times he was unwell, but he was always very stoic on his bad days. His cot was called "Grace" - and he certainly showed grace as he lived with his illness.

Ysmael had been a bit miserable for a few days, but on Thursday, he had a lovely time. He was in his walker - a Christmas present which has brought him lots of joy -  and he was moving around, "dancing" to some music, and enjoying his bottle of milk. We are so thankful that his last evening was happy, and that he was enjoying the company of those who loved him. However, on Thursday evening he suffered a large haemhorrage and he died peacefully in his ayi's arms.

 It's hard to accept the loss of these very precious children. Yes - this is a palliative care Home, and yes - we know that many of our children have a terminal diagnosis. But we don't look at them day to day and see "dying" children. We see life and joy. We see children just being children - learning, growing, laughing, sleeping. We delight in their achievements and love without reservation. So it doesn't matter how much we prepare ourselves, it is always too soon to say goodbye to these dear little ones. There have been broken hearts in our Home these past few days.

But ultimately, there is peace too - peace in knowing that Ysmael was loved, and that he had a Home here. There is peace in knowing that he is no longer battling illness, that his spirit is free now. There is peace in knowing that he was here for a reason, and that  his little life mattered. He was only here for 18 months, but he was unique and adored. 

We are thankful for Ysmael's life, and for all the things were were special about this one-and-only little boy. We loved him, and we will not forget him. Please keep Ysmael's ayis especially in your thoughts - they are missing him very much. 

Al wears the apron!

Daphne has been away on holiday lately. We hope she is have a lovely time on her well deserved break. But....while she is away, the babies still have to eat. Daphne has some special skills that are hard to match, but thankfully we have some-one ready and waiting to take up the challenge!

 I am sure that not many organizations throw one of their Directors into the kitchen - but Al is more than willing. In fact, in his life-before-Butterfly-Home, Alan worked in the catering industry. So he is more than capable of organizing the kitchen and producing delicious meals for hungry little bellies.

Actually, he looks pretty happy as he blends up something tasty and healthy for the littlest ones. And we think the apron suits him. (Daphne has some nice floral ones, but for some reason he hasn't been using those so much.)

Here is some yummy apples,  cooking up ready for dessert. Growing babes need lots of energy and vitamins, so we prefer to cook our own food rather than buy ready-made cans. Home cooked food has more intense flavours too - which helps children learn to appreciate different tastes.  Varying tastes and textures are all part of providing an environment rich in stimulation for developing little brains. Since our kids have extra challenges, we feel a fresh, varied diet is an important choice we can make for them.

I don't think this cake needs much explanation. Our workplace has lots of women - Al is outnumbered, with just one other male to back him up. All the ladies have been giving Al a hard time since he put on his apron. This cake is his way of making sure they all appreciate his cooking!

Christmas all year round.

We have a little secret to share. We didn't actually hand out every Christmas present at Christmas time. Our sweet children are still only young, and easily overwhelmed by lots of gifts. And we knew that they would appreciate some special things at a quieter time, when they could really concentrate on what they were receiving.
This was Paul's special day - he has some friends in the States who have supported him for a long time. Today he got to open their gift.

He looks very pleased with his cars and his telephone. Remember Paul is the boy who just loves to play "telephone."

 

But the most special things in this parcel were the lovely hand made messages from some little girls in America. Two little girls who, just like Paul, were born in China. They have sent their love in the form of beautiful artwork. We could see that a lot of time and imagination has gone into the making of these cards.

And Paul seemed to know that these messages were special. Even when he went off to play with his new toys, he still held tightly to his butterfly card.

Thank you girls, from Paul and from us. There is something really magical about children helping other children. We believe that little people who show compassion are going to be the adults who will make this world a better place.

Another new face

Emmanuel is the new kid on the block, but we also have a new volunteer in the Home. Her name is Emily, and she has come from Australia with a wealth of nursing experience and compassion to share with our children. She has only been here two days, and already she is settling in and getting to know the children. It seems she has a gift for connecting with the kids - especially our more reserved butterflies. Even the very shy children are warming up to Emily. Here she is getting a cuddle with Ysmael.

Emily's special field at home is cardiology, so she has been well qualified to assess Emmanuel. She's been discussing his heart condition in detail with our two resident nurses, and explaining what is going on with his little body. Unfortunately he has not been gaining weight appropriately, and he's going to need a nastogastric tube so that he can be fattened up ready for surgery. We need his body as strong and healthy as possible, so that he can cope with such a big operation. 

Emmanuel looks pretty happy about his examination!

Emily is also keeping a close eye on that pesky ear.

Emily has already found the Home to be a "little haven" with lots of warmth and humour. She is doing a great job at acclimatizing to the new environment. She says that  language and communication are the most difficult challenges. We think she is coping just wonderfully - her great nursing skills and enthusiasm are definitely getting her message across.

While she is with us, Emily will be sharing her knowledge with our resident nurses, and doing some training in areas relevant to paediatric palliative care. Having a nurse come to support us with skills in these areas is such a gift!  Emmanuel certainly looks pleased to see her around!

Meet Emmanuel

After Angel was adopted, her cot " Love" became home to this little guy. His name is Emmanuel, and most readers will guess that he has a congenital heart disease. (Those blue lips will give it away every time.) He also had a nasty ear infection, which is now responding to treatment.

When he first arrived, Emmanuel was still quite shocked and withdrawn. He didn't seem to show any emotions - no crying, no smiling, no laughing, He was just like a little doll, remaining totally passive no matter what happened around him. He didn't react to his surrounds or to any of the people who were trying so hard to connect with him. This little guy had walled himself off from the world.

Now it's been a few weeks, and we are seeing a different baby. He cries when he wants attention, and he laughs and babbles when he is happy. He is recognizing his own ayis and responding to them beautifully. It's so lovely getting to know him as he lets down the barriers and allows us in. We think he is a very brave little boy for trusting us in this way.

 Just like Finlay, Emmanuel has some developmental delays. You need to have energy to learn new things, and that's pretty hard when you are short of oxygen. He has been too weak to exert himself, and most of his time has been spent just lying in his cot. We are already gently changing that, and making sure he gets up and about to enjoy his surroundings. Soon he will be taking a trip to Shanghai to have his heart assessed. Our hope for him is that he too can have surgery, and that his heart can be healed. Please join us in this hope for Emmanuel.

Big girls at the block table

 Swallow and Sarah look like they are planning to build something amazing at the block table. Both these girls were so tiny and helpless when they came to us - Swallow was just a newborn, and Sarah was not much older. It's been such a joy watching them grow from little babes in arms, to big girls who can sit up at the block table and interact together.
Swallow is a chatterbox and a bookworm, who really enjoys sitting down for a quiet read. She is not a stereotypical "meek and mild" bookworm though. If her buddy Paul comes and tries to take away the book, she will claim it back very firmly! There is no pushing this girl around.
Sarah is a sweetheart. She can crawl all over the place super-fast now, and she is saying about 15 words. One of her favourites is "Bao" - asking to be picked up. Any time is cuddle time for Sarah.
 Each girl has now been matched with their own family, so the day is coming when they will be leaving us. Our part in their growing up will be finished, and it will be time for their families to enjoy all the precious moments. We are so thankful  for these darling little girls, and for the wonderful life which is waiting for them.  And we are thankful that we get to be a part of their lives too. Even though we hope their families will be here quickly, we plan to enjoy every minute we have with them!

Angel's new home.

Look who's having fun!! 

For more pictures, and the story of Nellie's (Angel's) adjustment - you can visit her family's blog.

http://ellen-purereligion.blogspot.com/

Sweet William

William has struggled with breathing all his life. Even though his breathing is improving now, his early days must have been pretty awful. Sadly, having to fight for air appears to have  left him with some marked delays. But this little guy is still working hard to become a "big boy" in the Home. Here he is practising standing up. His ayi is giving lots of support, and you can see his head is still quite floppy for a child of his age. If he tries to look around him, he has lots of trouble controlling his head movement. But look at how much stronger his legs are these days!

Balance and strength are both big challenges for William, so he cannot stand or even sit unsupported yet. Daily physio sessions and a whole lot of practise makes a difference though. While it's true that William takes much longer than most children to reach his milestones,  it feels just as sweet when he gets there. You go for it, William!

Jesse's favourite things.

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 textures, 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.

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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

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

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

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

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!

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!