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!