Tuesday, April 22, 2014

Chinese Headdress

It is too much fun to put Niko in various head pieces.  If I'm ever feeling blue and need a pick-me-up, Niko usually ends up rocking a hijab.  And here is a traditional Chinese Headdress.


Sunday, April 20, 2014

My cherie Claire

Ummm… you want to know how obsessed Mila is about Claire?  She drew this picture of her yesterday and insisted that I mail this to Claire.  


Mila says she loves her "flowy hair".

Sunday, April 6, 2014

RIP Charlie

I am so heart broken.  Charlie passed away on Friday.  He was three years old.  It hasn't even been a year since his sister left this world.  Charlie and his sister, Amber, both had I-Cell.  They were the only children of a very amazing couple.

I am so stunned.  Charlie never seemed to have any health issues.  He was doing so well and breaking grounds (like standing up and learning to really walk with a walker).

Over the last year, I've watched the fall of too many I-Cell kids.  It never gets any easier.  Each passing of these little angels slices a fresh cut in my heart.  And each time, I'm made aware that I will have to face this harsh reality in the near future.  I really hate I-Cell.  Life is so unfair.  Children should never have to suffer.

RIP sweet Charlie.

Tuesday, April 1, 2014

Little Charlie

Dear little Charlie is in critical condition.  He is the younger brother of Amber, who passed away last May.  I believe he is about three years old.  He developed pneumonia a couple days ago.  One of his lungs collapsed and he's been put on a ventilator.  As a result, his other lung, being overworked, became inflated and has sprung a leak.  He now has an air pocket outside his lung.  Unfortunately it is located in a spot where the doctors cannot reach, and therefore they cannot release some pressure.

He's the cutest little thing.  I don't pray, but I'm doing the atheist equivalent.  I hope with all my heart that this boy will pull out of this really soon.  It's all pretty surprising because he's been doing so well.  He was just recently learning to walk with a walker (a pretty astonishing feat for I-Cell kids).

Sending all my good energy to you dear boy.