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Friday, April 8, 2011

Life's about changing, nothing ever stays the same.. this is just Part 3.....

"When I sit in darkness, the Lord shall be a light unto me."  Micah 7:8

I have never doubted for one minute that GOD didn't hear all my cries out to him, the nights I've laid awake almost all night just literally pouring my heart out earnestly for Jeremy's recovery, he heard and was addressing.  I knew he was working in Jeremy's my life, it wasn't fast enough for me but I had a problem with not understanding the reason, why or the plan and I'm honest I still don't.  I know that sometimes it's not up to us to understand just accept that this is just the way it is, in fact when people ask me how things are going my new answer is, "we are progressing, and it is what it is".  I've commented that I have came to acceptance this is our life, it's changed and I am trusting GOD for the why.

Yesterday was an awesome day, that I'm sure God was probably saying, "Lora, oh ye of little faith".  Jeremy had a GREAT school day and was in such a good mood.  I found out he qualifies for 12 hours of nursing 7 days a week, I trained the school nurse to straight cath him so I wouldn't have to go up to school to do this daily, Hallelujah, Amen and Praise GOD.  I have been advocating for almost 1 1/2 months to get the school nurse on board to cath him, we've had issues and they had to get a contract nurse but we've been working on getting Jeremy nursing for almost 2 months.  Jeremy's dad was there when he got home so this gave me some much needed freedom, to do some things I haven't been able. 

I got to attend my OGE awards banquet in which I received my service award for 20 years.  OGE has been a huge blessing in my life, they've always been so supportive with Jeremy.  When you receive calls from your boss that management is checking on Jeremy, it's humbling.  I had a good time, enjoyed a good meal, social time with my fellow co-workers.  
Me, with Mike Mathews on left, Director of Regional Operations and Sean Trauske, VP & CFO.  
When I got home at 8:30pm, Jeremy had fell asleep on the couch about 7pm.  He had a dirty diaper so I was getting all the stuff together to cath him, change his diaper and get him ready for bed.  I went to remove the diaper and it was was top heavy which as you know hasn't happened since his surgery on January 28.   Praise the Lord, Jeremy had urinated and my estimation about 100 to 150cc because when I cath him at night I get between 200 to 150 and I only got 50cc.  I honestly stood there for a minute in total shock and it actually took a while to sink in that Jeremy urinated on his own.  It was one of them I'm in total AWE of GOD moments.  I know God has been working all along, there have been signs and I'm sure the other part to words he would have spoken to me were, "Lora I have heard every cry out to me, every tear you shed". 

Our life just continues to change and although I am happy for Matt Cobb, I am so sad because I found out today that he is no longer going to be Jeremy's behavior teacher.  Matt has moved on to something else.  A common statement at our house is, "Jeremy what would Matt tell you to do."  We have seen Matt since Jeremy was 5 years old, his wife Heather worked up J's behavior plan.  They have also became very good friends in my life and I depend on for answers about J's behavior.  They have came to Jeremy's birthday parties with their son John David, who gave Jeremy his little motorcycle when he outgrew it.   It was funny last year, when we went to Osage Beach to stay, I posted on facebook, got a phone call from Matt Cobb he was there with his family so we were able to meet up.  Jeremy has been doing amazing well behavior wise and for many years.  I believe it's because God brought Matt into our lives for this season.  He caught the behaviors early and taught me how to recognize signs turn into positive before they become a behavior.
 
J worked really hard for Serena at PT on Monday, he just continues to progress each week.  He is getting very strong trunk support which is the basis for all.  The other night he slid off the bed and stood there for a while, he supports himself on the bed.

Wednesday we did the Urodynamics test to check J’s bladder. This wasn’t a pleasant test for Jeremy and I felt sorry for him going through it, but was very proud of how well he did.  The technician filled his bladder up to approximately 425cc and he was literally beyond full.  The Technician stopped at this point but the object was to see at what point his bladder would fill up and leak out. J never did leak. When she got to 350 cc, J got very uncomfortable and was doing everything in his power to get off that table but once she cathed him he returned to himself.  The test goes to the physician to read but Preliminary wise, Jeremy’s bladder is not working or it wasn't when we did the test on Wednesday.  I’ve done a good job in cathing Jeremy, so I still continue to cath him to make sure his bladder is emptying itself.  Today, we do the Kidney Ultra-sound to check for reflux, make sure urine is not backing up into the kidneys and there is no damage.  I won't have any results until next week or when we see Dr. Confer.  

Jeremy has however been Mr. Personality and cracks me up.  I took him to the Children’s Hospital with me to visit one of my families who was being admitted the night before but they were down in MRI so I didn’t get to see them.  We would get on the elevator and J would do his ornery scream but the minute someone got on the elevator with us, he would crinkle his nose, give that cute little smile and ornery laugh like I am so adorable, give me attention I don't get enough.  He was being Dr. Jekyll/Mr. Hyde.   He did this scream all the way to the car, but get him in his car seat and there was the adorable, ornery laugh like yea mom I was just testing you....
OK just kidding, I'm really ok

Then I promised him ice-cream so we went to Braum's which again he was doing his scream, the lady at the window says, "oh you are so cute are you getting ice cream" in which J wrinkles, his nose, smiles and laughs.  When we go to pull away J says, "I want that", he was wanting his ice cream so I gave it to him.  He hands it to me and says, "I want that" so I hand it back, he gives it back.  He wanted mine, which mind you was the very same ice-cream, German Chocolate so he got mine and I got the kids cone.....We then came home and played with his Weeble house, which is what is going on in these pictures.  He would put the Weeble on the slide and it would slide off and he would laugh like crazy.....

1 comment:

Denise said...

How adorable these pics are! I just can't tell you enough how thrilled I am for you this week! Things are falling into place! Much love to you both!

Denise