Sunday, May 26, 2013

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.