Hi there.  This week we begin using the new formula "Vivonex Ten" - and I'll keep you posted if it affects his seizures at all.  It will be great to begin this process our gastro Dr. has laid out for us.  Cody has had a bad cold for the last week which makes us a bit nervous since he was only 2 weeks post-swine flu.  We took him to Children's twice over the weekend because they were reporting fluid in his right chest, low blood pressure, and he looked dehydrated.  By Sunday he had normalized but we've been keeping a close eye on him.  We're taking him back in today because it seems like it may be settling into an infection.  I'm more than exhausted by all these dr. runs....but mostly because he hasn't slept through even part of the night in 5 days now.  He coughs all night long.  And Casey has it too.  So in true ironic fashion, when Cody stops coughing and sleeps for a half hour, Casey starts coughing.  I run between them like a chicken with my head cut off.  And they both get 'up' for the day around 6:30am because it's so hard to sleep with stuffy noses and coughing.  I'm tired.  Luckily his seizures haven't seemed worse due to the illness - and he was tested for Influenze A (swine flu and all it's ugly counterparts) and it was negative.  So it's just a bad virus that keeps lingering and lingering.  But I'm glad for a sunny day, and for the promise that we are on the end of this cold rather than the beginning!  I do hope it isn't too big a punch for Cody given that these two illnesses have been back to back.  That is not a great scenario for a mito child.  We pray for stamina for him - and strength right down to those tiny little mitochondria that keep him going!

Many of you have asked for an update about Buday, the little boy in Nepal who we are sort of sponsoring.  I say 'sort of' because it's not some formal program - he has just won my heart because he is so similar to Cody. 

If his name is new to you, here is what I first heard of him from a woman in Nepal who runs a children's home there.  Her name is Maggie and she is in her 20's and has devoted her life to the children of Nepal.  Her blog is at http://maggiedoyne.squarespace.com/about-maggie-doyne/

She is AMAZING.  I learned of her through my friend Terri.

Dear Shawna,
>
> Thank you so much for helping me with this. Here are some answers to
> your questions (as much as I know.) The boy's name is Buday Kumar
> Geeri. I would estimate him to be around 12 or 13 years old.  His
> mother passed away more than 8 years ago and his father passed away a
> little over a week ago while I was in London. He lives in the main
> market area of Surkhet, Nepal where I work, a small city in the
> midwestern region of Nepal. He can have up to 6 or 8 seizures a day
> and spends most of the time barely conscious. I have taken him for
> medical assessment in our local regional hospital where he was
> diagnosed with epilepsy and mental retardation. He has severe burns
> and cuts on his head from his falls. He has no other living relatives
> that are known.

Love, Maggie
>
-------------------------------------

Well he wound up receiving care from a woman who was willing to provide shelter, food, clothes for him.  And there are some who chose to donate to him specifically.  But last week I got this update through others who are keeping track of him:

"Buday was taken to be evaluated for admission to a home for mentally handicapped children last week. He has deteriorated to the point where he is totally incoherent, has no bladder control or bowel control and she doesn't understand why he is still alive. His physical body is just hanging on. The priest who did the evaluation said that they couldn't take a child who was unable to take care of his own physical needs, eating, bathing, etc as they just were not equipped or staffed to deal with a child in his situation and that a facility for someone like Buday didn't exist in Nepal right now.  What's happening is that
we can't get Buday to stay in one place and the woman who is caring
for him is getting frustrated. He runs away when she goes to give him
a bath etc. He wanders off into the city and falls and cracks his
head open and then it's back to the hospital. He even trys to get
away from the hospital. He disappears and then doesn't get his
medication every night like he should. I feel a little bit like the
woman who is supposed to be caring for him is giving up... and not
putting in as much as she could. He wanders off and no one really
bothers to look for him. He disappeared for three days last week.

We have tried every possible outlet and facility in Nepal and there is
absolutely no one who will accept him. They say the students need to
have basic self care skills and be in a strong enough mental state
where he can go to school. Sometimes they require that students have
parents. They think he is too far behind. It's frustrating but we're
all doing what we can. There is a priest that has an office here in
Surkhet who has been helping me a lot. We have a meeting this week
with he, myself, and the woman who is caring for buday to discuss
certain issues we're having. It seems like the people who really need
the most help are the hardest to provide for. I feel like this kid
really deserves a place somewhere but no one will take him.

Shawna, thank you for your concern. I will continue to keep you in
the loop with all of this as best i can.

Love, Maggie
---------------------------------------------------

Here was my reply: 

Maggie, Thanks so much for that update.  And that makes total sense...when you describe Buday's habits, it's like you are describing my Cody.  He would act identically in all of those circumstances.  Here in the states, a child like that would receive what our state calls intensive "1:1 support" meaning that the state recognizes that a child who is that impacted needs one on one supervision at ALL times.  They are a danger to themselves and a constant flight risk.  I totally get what kind of child Buday is - especially because his behavioral profile fits that of a child with intense seizures.  So much damage to the brain simply robs the child of the most basic functions.  In the U.S. he would get so much support - it is heartbreaking that Nepal has no system for him to fit into.  I'm not flaunting the U.S. per se (because we have TONS of flaws, that's for sure!) but we do have a system set up to support a child with Buday's level of disability.  I guess it makes me feel lucky - which is a hard sell given that we have a child who hangs on to life by a thread many days.  But given Buday's circumstances, I do feel lucky with what we receive for Cody.
 
I know you must see countless children fall through the cracks.  It must be such a crushing element of your work there.  I can barely stand it that he is suffering so.  I certainly know that you have added immesureably to his life - what a blessing you have been.  And the caregiver as well. 
 
So let me ask you this - I realize it's not about money insofar as there is just no facility to take him.  But would more money (possibly) help if it were to pay someone to be his "1:1 support person" full time?  How much would that cost?  In other words, paying someone (it could even a younger, responsible person - in their teens or 20's) to simply be in charge of him?  Perhaps it would be two people: 1 during the day, 1 overnight?  Is that just way too whacky an idea? 
 
Just trying to be creative - and think outside the box.
 
love,
Shawna Graves

--------------------------------------------------------

Maggie said she was thinking along those lines as well.  So we will see where it goes.  I have no idea how much money it would take, or if it's even possible.  But I do know that if Cody were Buday, it would literally break my heart in two to know he was wandering the streets alone. 

So that is the latest - we continue to pray for little Buday - who is so incredibly fragile and so valuable.

with love,

shawna