This is the most recent photo of Buday. I know that blank stare well - the looking off rather than into the camera. 

As you can see, his face contains the battle scars of falling down from seizures, with only the curb to brace his fall.  Maggie and and some of us in the U.S. have been brainstorming about Buday and the possibility of getting him a 1:1 caregiver who would be paid by a group of us.  These are many obstacles in our way - and I have gotten a HUGE education about what life is like in Nepal for the disabled!  Here is part of the letter I received:

"The issue is locating someone who cares enough, and is qualified enough to give him the care that he needs. These people are subsistence farmers in a remote area who don't care if there own children work on their farms and never attend school. This is how they grew up and they don't know any different.  We are asking people who have little regard for their own children in the way we do here in America, to now take care of a child who soils himself multiple times a day. They wash their clothes in streams or in buckets with water they carry from streams or worse, stagnant pools of water remaining from Monsoon season. No one in the 2 years that Maggie has been there has done anything to help this child who wanders their streets day and night, having seizures, falling and cutting his head and elbows daily, sleeping in the gutters along their streets since the death of his father, and now also totally incoherent, and rarely lucid.

WE are all going to have to pray long and hard for an ANGEL to appear and care for this child 24/7.  A major part of the problem concerning the lack of care for those who need it most is the cultural belief in karma and the interpretation of karma by the uneducated segment of the population. Their belief is that the afflicted person has done something evil in a past life and thus it is their karma to live as such for this life. People like Buday are treated with scorn by a large segment of the population and even more so in rural areas. Juntara was berated and taunted as a witch to the point that she rarely left her hut in her own village. 

And then there is the caste system and the fate of untouchables, the lowest caste, thought to be less than human for deeds done in past lives. When Maggie invited the mason and his wife to live in the home a year ago to assist her in caring and cooking for the children. Maggie was criticized for bringing an untouchable into the home to cook for the children. Higher castes do not eat food or drink touched by an untouchable. Even members of the KVCH board of directors in Surkhet would not eat at the home for months because of this. Maggie met with them periodically to challenge these beliefs and to show them how silly they were being. But to them it is an insult to even discuss such matters.... It is a culture that is so foreign to ours."

As the mom of a disabled child, it tears my heart in half to hear how these valuable amazing beings are treated in Nepal - and many other places in the world.  Doesn't it make you feel lucky if you live in the U.S. - even with a handicapped child?  Because at least we have what we have!!  Proof that there is always so much to be grateful for.  So the challenge is set before us...and luckily I serve a God who can move mountains...even in Nepal. 

Now back home, we have mountains of our own.

This is currently Cody's g-tube site.  Ugh.  It bleeds for days - soaks thru any gauze I put on it (that's gauze covered in blood you see in the photo.)  I've had it checked 3 times and first they thought it was an injury from the mickey button being changed.  Then they thought it was granulation tissue.  Then they decreased the balloon size.  Now it's still bleeding - and creating bright red spots on all his shirts - and no one knows what to do.  At the same time, his flu turned into an ear infection and sinus infection so he's on anti biotics and still feels pretty punk.  I'm also changing his formula this weekend to the new one that *could* hopefully help ease his gastro issues and in return, his seizures.  Sometimes I feel my head will explode from all the balls to juggle with his health.  His seizures are totally out of control - he just had 4 big ones in 1 day (4+ minutes.)  Life is nuts.  And in the midst of it all I'm trying to find 'Casey' time which seems impossible. 

Yet in the midst of it all, God always shows up.  And He is always on time.  This week the Lord gave me a special treat during a therapy session.  I was videotaping Cody 'communicating' and in this video, you'll see him first pointing to a picture of 'chips' to request one.  Then he does a two-word sentence using signs which is AMAZING for him!  He signs 'more' 'swing' very clearly and with great intention.  Granted, his sign for 'swing' is modified and is different than typical sign language for 'swing' - but he signs for 'swing' by patting his head with both hands and anyone who knows him knows that is his way to say 'swing.'  Enjoy!

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We are so proud of him.  This combo seems to work best for Cody - signing for some things, using pictures for others (like food choices.)  

Go Cody, Go Cody!

love, Shawna