August 21, 2009

Johnny,
Tonight I went to Woman of Faith at American Airlines Center. It was really hard being there, knowing that you've walked every inch of that place. While I was there, Valerie sent me a text...she was there too and she was also thinking about you. You are so loved! One of the guests that were there was Steven Curtis Chapman and he sang a song that brought tears to my eyes, it made me think of you and Jackie. Here's the lyrics:

“Heaven Is The Face” by Steven Curtis Chapman:

Heaven is the face of a little girl
With dark brown eyes
That disappear when she smiles
Heaven is the place
Where she calls my name
Says, “daddy please come play with me for awhile”
God, I know, it’s all of this and so much more
But God, You know, that this is what I’m aching for God,
You know, I just can’t see beyond the door
So right now Heaven is the sound of her breathing deep
Lying on my chest, falling fast asleep while I sing
And Heaven is the weight of her in my arms
Being there to keep her safe from harm while she dreams
And God, I know, it’s all of this and so much more
But God, You know, that this is what I’m longing for God,
You know, I just can’t see beyond the door
But in my mind’s eye I can see a place
Where Your glory fills every empty space
All the cancer is gone
Every mouth is fed
And there’s no one left in the orphans’ bed
Every lonely heart finds their one true love
And there’s no more goodbye
And no more not enough
And there’s no more enemy (no more)
Heaven is a sweet, maple syrup kiss
And a thousand other little things I miss with her gone
Heaven is the place where she takes my hand
And leads me to You
And we both run into Your arms
Oh God, I know, it’s so much more than I can dream
It’s far beyond anything I can conceive
So God, You know, I’m trusting You until I see Heaven in the face of my little girl

Love you little brother!! XO Jen

From Mom:
Well, the move is not going to happen. Insurance said you would have to go to an acute hospital like Baylor and then they may or may not send you to a long term acute care facility. Dr Ngwu (Na-goo) came by at 7pm to see you. He tried to find a reason to send you to Baylor-no luck- your not running a fever, your pneumonia's better, and your wounds are better. So, here's the plan - when you visit Johnny, bend his fingers on his left hand - only to the point of resistance. Don't force them. (Dr. Ngwu told me this) Same with his arms, legs and feet. Monday I will call Dr. Ngwu to get him to schedule the botox injection in Johnny's left arm right away. We'll check his physical therapy and get them to come more often. His pneumonia is on the run so as quick as he is infection free, we will schedule the Baclofen pump. Dr. Ngwu said we could send him two someone about his trach and trying to wean him off it. He also needs to see an opthomologist and an orthopedic doctor. We'll just play their game and make them keep that ambulance running up and down the road! Once he gets the pump and can sit in a wheelchair, I will take him home. Until then, I think I'll go ahead and quit work in two weeks and stay up here. So there BCBS!! It's 8:30pm-I'm going home - be back tomorrow. Love you Johnny - Mom