I AM STILL A BLOGGER and AN IMPORTANT UPDATE ON CREW

                              

I am still a BLOGGER, just a very BAD one.  So many days I have sat down at the computer ready to share my current life, only to have writers block.  I have so many posts in my head, in my heart, just not typed out.   

This has been the YEAR of CHANGE in our lives.  With Amanda and Micah and the boys moving to Katy, life has been anything but normal. 

And I love NORMAL.  It is no secret to anyone that I HATE CHANGE. 

This change equaled none I had ever faced.  I have failed miserably at this test.  MISERABLY.  I have never experienced physical pain that compared to the heart pain I have had this year. 

Parker and Jack were as much a part of our family on a daily basis as Jack and I are.  And then they were gone.  Five hours away and neither like to talk on the phone.  Just imagine me on my knees praying "God, please give them a love for the phone."  Instead I would hear in the background, "Is it Grammy?"  Meaning neither wanted to have to talk.      SIGH!! then CRY! 

Parker and his Beautiful Mom

JACK GRADUATING FROM PRESCHOOL

A FUNNY BOY

Jack and his Mom

We did get to visit in May and see Parker, who by the way will be 14 on Monday, be inducted into the National Honor Society

Wow, it took my breath away.  Fourteen years ago his teenage Mom committed herself to raise a little baby and she has done an amazing job.  

Parker and Jack (his POP) on his induction night.  Two National Honor Society Members. 

Jack is still Jack.  So many of you have emailed me and said you miss Jack stories.  I promise some soon. 



Tonight please focus on CREW.  So many of you have grown to love him through this blog.  Tuesday is his BIG SURGERY.   


Strong and READY

   

He is SO Precious

Instead of me explaining the surgery, I am going to use Maries words to me this week.   

They will  be reimplanting his ureters through his bladder and repairing his bladder neck. He will have stints coming out of his belly through his bladder into his kidneys. Its risky at his age. Also its risky because his quality of life rides on it. If it works to keep him from renal failure, its successful. If his kidney/bladder infections, kidneys and blood pressure decline, its unsuccessful. If unsuccessful, they will pull his ureters to the skin and create a new type of exstrophy. At around 5 years old they would build a bigger bladder. That means he would have to cath himself everyday, and I would until he could. So its really stressful. We a dreading this surgery so much more than the previous ones, besides the first. We were told to plan to stay at least a week. So who knows really. We've been told lots of things that don't ever happen. It will be a long surgery.  But we are trying to stay positive the best we can. Hope your doing well!
All my love...
Marie


We made a deal that she has permission ANYTIME to vent to me late at night or anytime for that matter....It's is so hard on her and a 24-7 job, plus three other small children ...this was one message just so that you know she is struggling....

His blood pressure is still hard to control, and they fear a stroke. His kidney disease is irreversible so there's nothing they can do for that. He is pretty miserable but still tries to play and smile, which breaks my heart. He's such a good boy, I wish I could be better for him.  I have a hard to showing my weaknesses. I'm just so far past that point I've cried to strangers lately. I love you.

This next week please ask God to give Marie strength, energy, peace, and assurance that he has Crew in his hands.  I cannot imagine handing him off to the doctors Tuesday morning.  If you get a chance send her a short note. 
mariemorris21@gmail.com



One more thing...I know some of you are wondering...I have been getting email...Am I still juicing? 
YES
I have not missed a day in 18 weeks.  Even that blows my mind. 
But the good news is Jack is too. The last three weeks were filled with cardiac and pulmonary tests (just check-ups) !  His numbers were so improved that even his doctors were a little shocked. Really shocked.  His EF was up 12 points. All his breathing tests were in the doctors words, remarkably BETTER.  All I am going to say is THE ONLY THING we have done DIFFERENT is JUICE.  

I have so many other things to share.  Ashley Adams needs prayer.  One of my ELVES has a little two year old girl, Casyn Claire,  that has been diagnosed with 
Familial Mediterranean Fever.  It was confirmed at Texas Children's Hospital this week. Please pray for her.  It's an ugly disease that little is known about. 

ON A HAPPY NOTE
One of my dearest friends has just started blogging...
PLEASE go and VISIT HER.  Christi has the gift of writing.  She has three posts up and they are ALL THREE GOOD.  Tell her you are my friend.  She writes nice and neat and I write all over the place in every color. 

If you have not bought Amy Grant's new CD, it is worth every dime. 

SUNDAY BREAKTHROUGH ****UPDATE

****This is the message I just got from Marie

Marie Morris-White

• They took him off the vent today and now he is on oxygen and tolerating it pretty well. He gets steroids to keep the swelling in his throat down so they don't have to reintabate him. They had to
  start blood pressure medicine because it was getting out of
  control, so he gets that every 6 hours.
• Tomorrow they may change is blood pressure medication to be closer together because he isn't making it the 6 hours without it.
• They started his feeding tube again.  When this tube of milk is out they may let him have a bottle to actually feel full, they said they don't feel full with the feeding tube.
• His belly where the surgery was is swelling more today then yesterday so that concerns them for the incision. So he is still not out of the dark but he is still fighting!

REMEMBER LAST NIGHTS POST ASKING GOD FOR A SUNDAY BREAKTHROUGH.

CREW IS BREATHING ON HIS OWN.
THANKING GOD WITH TEARS POURING. 

MY HEART

This will be the post that I will have to try not to drown the computer from tears pouring over it as I type.

Four years ago Amanda was packed and ready to head to the hospital to deliver my husbands little namesake…We were so honored that this boys name would be Jack Voss, named after both his grandfathers.

It was Super Bowl week and coincidentally Eli was the winner that next Sunday…and look who is playing this Sunday..

Parker had been “the one and only” for so long. 
Then Greg married Dana and Austin joined our family, BUT could I love another little boy the same. 

Parker had lived with us, he had grabbed my heart and I had held on tight.  That’s one I can’t explain.
 
Amanda and Micah were so gracious to let me stay in labor and delivery with them and be there when Jack made his entrance to the world. 

(My girl has babies easy) with no drama…I remember seeing his face and instantly falling head over heels in love…instantly…He was perfect..

we laugh now…if we had only known then how different his personality would be from Parker’s.
Parker is quite, Jack is loud.  On the third day he came home totally fine or so we thought…

I have written about what happened next but 2 days after he came home we were in the NICU with him fighting for his life.  He had meningitis.
I will always believe had Amanda not gone with a gut feeling something was wrong, we would have lost Jack. 

He was a very sick little man and we did not take a deep breath for a couple of weeks.  It was one of the scariest times of my life.

Today he turns 4!

Totally fine, the funniest kid ever, a laugh a minute, a strong willed child, a talker, a climber, a mess.  No one makes me laugh like him. 

He breaks things and he’s sorry but don’t make a huge deal about it because he doesn’t care that much. 
He puts stickers on everything and he has signed his name on a wall or two.  He is free spirit. 

You do not want to have a discussion with him in the toy aisle of Target.  He will win.  (At least with Grammy)

He does not like gul stuff…that’s girl in Jack language.  He really thinks he is Woody from Toy Story and don’t try to convince him he is not.
 
He thinks he speaks Spanish because he watches “Dora”!  He tells us certain words he says are in Spanish.
 
He hates talking on the phone so don’t call him. 

I cannot imagine life without him.  So today we are celebrating  the gift of Jack.  We call him our little hippie…

He has long hair with culs (curls)and he does not want them cut off.   The red on his nose in the picture below is because he decided he wanted to be Rudolph and proceeded to color his nose. 
Guess what?  He has my heart too.

Some of the many faces of Jack.

                        

I LOVE YOU JACK STROTHER

On a very serious note, please pray for little Crew as he has his first surgery on Thursday at Arkansas Children's Hospital.
I was not sure what it would be and his Mom said it was fine to share the details.   
The first surgery will be very long.   
It will be to move the belly button up to the right place, putting the bladder in his body, breaking/dislocating (not sure which one they will have to do) the pelvis. He will have a scar from his belly button to the pelvic bone and he will be in a body cast from his chest down. His arms will be free. The cast is for his pelvis to heal and he will have it for 4-6 LONG weeks! It breaks my heart to think about it.  So please remember the entire family in prayer.
    

           Crew and his Mom Marie