It looks like we might get to bring Braden home this weekend if all continues to go well with the vent. Braden seems well by all accounts, but he has lots of lactic acidosis that his body is not compensating for, and so it's not looking likely that we will get to take him off the ventilator for sprints like we were before. I don't think things look any worse, but he started doing some strange breathing patterns this week, and therefore, they have taken a closer look at his blood chemistry levels and based on past readings have come to this conclusion. While it's hard to hear, we know it's the right thing for Braden to keep him comfortable so that his body doesn't have to work so hard to overcome itself.
We are still waiting on more orders from the geneticist at Texas Children's to see what next. This disease 15 years ago was diagnosed once the patient passed and an autopsy was done... we are lucky to still have Braden here to help give us more answers! We will keep you posted on that too... but those tests take about 2 months to come back, so don't be in a hurry to get the answers.
As I was driving home the other day, I heard this song on the radio. While it brought tears to my eyes, I think it's beautiful, so I wanted to share. It's called "He's My Son" by Mark Schulz.
down on my knees again tonightThe Wilson's (Braden, Kodi, and Brad)
hoping this prayer will turn out right
See, there is a boy that needs Your help
I've done all that I can do myself
His mother is tired
I'm sure You can understand
Each night, as he sleeps
She goes in to hold his hand
And she tries not to cry
As the tears fill her eyes
[chorus]
Can You hear me
Am I getting through tonight
Can You see him
Can You make him feel alright
If You can hear me
Let me take his place somehow
See, he's not just anyone
He's my son
Sometimes late at night I watch him sleep
I dream of the boy he'd like to be
I try to be strong and see him through
But God, who he needs right now is You
Let him grow old
Live life without this fear
What would I be
Living without him here
He's so tired and he's scared
Let him know that You're there
[chorus]
Can You hear me
Am I getting through tonight
Can You see him
Can You make him feel alright
If You can hear me
Let me take his place somehow
See he's not just anyone
Hes my son
Can You hear me
Can You see him
Please don't leave him
He's my son
12 comments:
That is a beautiful song. I found several postings on Youtube and this one is awesome. We love you all and pray for our Lord's powerful arms to hold you always. A good cry by all....
love momma and nana Wilson
http://www.youtube.com/watch?v=ppQ0QjmuEt8&feature=related
Kodi,
that is a beautiful song...praying for all of ya'll...
Kodi,
That's one of my favorite songs too and when Mark Schultz does it in concert he tells the story behind the song. Remind me and I'll bring you the dvd of the concert.
Hugs to all of you!
Hope you get to take your snuggle bug home this weekend! I'm hopeful the testing will provide some answers to assist in supporting Braden in any way we can.
Brandy
Hey Braden,
My name is Oliver Prats and I was born with Spina Bifida. I see Mrs Gayla once a week, and we had aqua therapy together. I would love to come and visit you. Maybe your Mommy could call my Mommy and we could get together for a visit! Hang in there buddy, my family and I are praying for you!
Oliver
here is my Mommy's email
laceyprats@hotmail.com
We love you all. S & P
Brad, Kodi and Braden,
We are all hoping that all goes well and that you get to go home this weekend. It would be so wonderful for the three of you to spend some really good quality time as a family in your own home doing what you want to do. Hospital's are that great for a place for alone time.
We are all praying for the three of you and keep you in our thoughts every day. I have many of our friends up here praying for your family.
Love to all of you,
Aunt Jeannie, Uncle Dave and the Merrill Cousins
Correction....
Hospital's are NOT that great of a place for alone time.
.....I should proofread before I post.
Love, J.
I have loved that song for so long, but it will forever more hold a deeper meaning to me. I love you guys, and pray Braden can be home soon.
K-Please let me know the second you need anything. You know I'm here for you, even if it's a 2 a.m. margarita!!!! I hope ya'll went home today and if you did, I'll start the casserole brigade!!!!!!!!!
Much love,
Courtney
Here is another song for you, again it brings tears to my eyes but the meaning is wonderful. "Go Rest High on that Mountain" by Vince Gill.
I know your life on earth was troubled
And only you could know the pain
You weren't afraid to face the devil
You were no stranger to the rain
Go rest high on that mountain
Son your work on earth is done
Go to heaven a-shoutin'
Love for the Father and the Son
Oh, how we cried the day you left us
We gathered round your grave to grieve
Wish I could see the angels' faces
When they hear your sweet voice sing
Go rest high on that mountain
Son, your work on earth is done
Go to heaven a-shoutin'
Love for the Father and the Son.
Go rest high on that mountain
Son, your work on earth is done
Go to heaven a-shoutin'
Love for the Father and the Son.
Thanks for being a light for us all.
Kodi, I think of you and your family often and know that Braden has a tremendous amount of love from all of you. Your strength is nothing short of amazing. Take care and hope to see you soon.
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