Wonderful World

Benzen has been doing really well.  We have had him home for two weeks now.  His blood work came back for this week.  His neutrophil number was 1300 up from 1000 last week but still not in the normal range.  His hemoglobin was down so they are considering giving him more iron than we already do every morning.  I really feel like this valganciclovir makes him feel run down.  I think that when he is done with these treatments he will feel like a whole new person.  I have heard and read that chemo really takes a toll on the body.  He just seems uncomfortable at times.  He may be a little gassy too.  Beyla still loves him to pieces and kisses his head every 5 seconds. 
We have contacted a girl that Amy knows from Liberty Center to help us learn sign language.  We just want to be prepared in case Benz does lose his hearing.  Plus I have always wanted to learn another language so now is the right time.  I think it will be fun, Beyla will enjoy it, and help us in the future.  Just with Amy's help I know the alphabet, can count to ten, and about 20-30 other signs. 
The Help Me Grow program came today to evaluate Benz.  They said he looked really good. Everything is right on track. We will have a therapy evaluation next week.; They also said his muscle tone was good.  It may have been a fluke but he has rolled over front to back twice now.
I have had day dreams about Benz being super human.  Maybe the enlarged ventricles and calcifications on his brain are going to make him super strong and super smart. Maybe all this time I have been worrying he wont be a typical boy will be wasted time and he will be "boy wonder".  I am always quickly brought back down to reality but that's OK.  Like the Billy Joel song says "I love you just the way you are."  His meds should be done on June 21st if we don't have to stop them.  Then we can take him out in public and he can make some friends.
The song I have been listening to a lot lately is James Morrison - Wonderful World.  The part where is says "Well I thought I was doing well, but I just want to cry now" is pretty much me on a daily basis.  Its that moment when things are going well and you start to get comfortable and then all of a sudden it hits you, this could be a very difficult life for Benzen.  But I won't let it, I can't let, We will be prepared for what ever comes are way.
Goodnight everybody,
Ben

James Morrison - Wonderful World
I've been down so low
People look at me and they know
They can tell something is wrong
Like I don't belong

Staring through a window
Standing outside, they're just too happy to care tonight
I want to be like them
But I'll mess it up again

I tripped on my way in
And got kicked outside, everybody saw...

And I know that it's a wonderful world
But I can't feel it right now
Well I thought that I was doing well
But I just want to cry now
Well I know that it's a wonderful world
From the sky down to the sea
But I can only see it when you're here, here with me

Sometimes I feel so full of love
It just comes spilling out
It's uncomfortable to see
I give it away so easily
But if I had someone I would do anything
I'd never, never, ever let you feel alone
I won't I won't leave you, on your own

But who am I to dream?
Dreams are for fools, they let you down...

And I know that it's a wonderful world
But I can't feel it right now
Well I thought that I was doing well
But I just want to cry now
Well I know that it's a wonderful world
From the sky down to the sea
But I can only see it when you're here, here with me

And I wish that I could make it better
I'd give anything for you to call me, or maybe just a little letter
Oh, we could start again

And I know that it's a wonderful world
But I can't feel it right now
Well I thought that I was doing well
But I just want to cry now
Well I know that it's a wonderful world
From the sky down to the sea
But I can only see it when you're here, here with me

And I know that it's a wonderful world
I can't feel it right now
I got all the right clothes to wear
I just want to cry now
Well I know that it's a wonderful world
From the sky down to the sea
But I can only see it when you're here, here with me

And I know that it's a wonderful world
When you're with me

http://www.azlyrics.com/lyrics/jamesmorrison/wonderfulworld.html