Where's the ball?

Jie

Jie has changed so much in the past few months; it is hard to convey the incredible difference in words.  Her skin is no better, but with EB we know this is normal and to be expected.  It won't get better.  What is improved is her level of interaction, her trust in her caregivers and her physical development.  

When Jie first came she screamed though most of her dressing changes.   She was very withdrawn and did not find comfort in being held, rocked or sung to.  Now her personality is really beginning to emerge and she's a delightful child to be around.  She tolerates her dressing changes very well.  And her social skills are so much better!

When you walk into her room (or even just pass by the door) she will look up and call out. If you don't reply, she will call out even more insistently.  Once you speak to her she'll really start "talking" and you can tell she's so happy to have your attention. 

 

But then sometimes she gets a silly, shy face, like she's embarrassed by all the attention.

 

But the best thing is when she smiles; her little face just lights up the room.

 

 Caring for a baby with such serious medical problems is never easy.  But seeing little Jie learn about happiness and trust makes it worth it, a hundred times over.

A budding pianist

 

  

UPDATE: Lu passed away on November 14, 2012 due to complications during his recovery from  heart surgery.  We'll miss you, little guy!

A perfect fit - adapting wheelchairs

 Our long term care project cares for older disabled orphans.  These are children who with severe physical and mental disabilities who are unable to attend school or care for themselves and will never be able to live independently.  Most of them depend on wheelchairs to move about when they are not in bed.

Children with such severe disabilities usually require specially adapted wheelchairs; those that can help support and position the child, not just for comfort, but also for safety and to best meet their complex medical and therapy needs.  Of course, such wheelchairs are not only expensive, have very limited availability in China, and they also require proper fitting and adaptations as a child grows. 
 
Fortunately, there are many low cost ideas for adapting equipment for disabled persons, and one of our recent volunteers, Florence, decided to take on this problem.   Florence saw that the ordinary wheelchairs we were already using could easily be adapted with the help of some foam and a lot busy hands!

A generous donor helped us purchase large sheets of thick foam for the project:

 Then cardboard templates were made to fit the size of the wheelchairs:

 And the templates were used to cut the foam padding:

 

 

Which was then fitted in the chair; small adjustments were made:

And then a happy little fellow volunteered to test it out:

Here are all the foam pieces, ready to be glued:

Then the foam was glued to form individual blocks.  Note the blue jeans in the background - those are stuffed and then decorated to be used as other low cost positioning aids.

 At last, the blocks were covered with fabric, fastened to the wheelchairs and ready for use:

What do you think, don't they look pleased?

Thank you, Florence, for heading up this project.  With a little ingenuity and hard work (OK, make that a LOT of hard work!) our kids now have wheelchairs that provide better support and positioning.  And our staff have learned that often you can find simple, low cost solutions that will make life for disabled children so much better!

Happy Birthday, Chen!

Everyone is here, but where is the birthday boy?

Hey Wen, did you see that beautiful cake?  I can't wait...

Oh, there he is!  Doesn't he look handsome in his birthday crown? And what a splendid cake!

Chen gets the first taste... 

 

 

And everyone else gets a taste too. 

 

 

Happy Birthday, Chen!

Colostomy Cuties

A good percentage of the babies we care for come to us for special care due to birth defects involving the intestines, anus, urinary system and reproductive organs.

In many cases, surgeons are not able to do a complete repair until the child is older and stronger, so often they end up with a temporary colostomy or urostomy.  This is an opening on the abdominal wall to allow waste to pass into a bag, instead of the diaper.

As you can imagine, keeping a bag on an active baby is no easy job!  Under the best circumstances a bag might last a week or more, but many times we end up changing it as often as every day, because once it comes off it cannot be re-used.

Right now we have 4 infants and one older child with colostomies.  We are seeking donations of bags, or funding to purchase in bulk so that we can save money.  We've had very good offer from a supplier who manufactures for export, but we have to buy 1000 bags minimum to get this special price (approximately US$1,300 total).  If you are interested in donating bags or money to go toward their purchase, please email us.

Here are 4 little ones who use colostomy bags now:

And here they are again, all dressed and ready to go!

4, 5, 7 Little Princesses