The Peace of God in J world....

I enjoyed a nice weekend at the Women of Joy Conference in Oklahoma city.  It was a nice weekend for a retreat with beautiful weather and a much needed break for me.  I have probably been just as clingy to J as he has been to me.  I was able to attend with 5 women from my church, my sister and a friend.   There was over 9000 plus women there.  The speakers were GOD inspired and worship leader was Awesome, to sing worship songs to our God and Savior.  The concert on Saturday night with none other than Michael W. Smith which I get to say that I have officially sung worship songs with him not just once but this is my 4th concert.  I was happy when he sung, "Above All" because that song really brings reality to my life, about what Christ did for me on the cross, and it's not about me, it's Above all.  I actually have a post after Jeremy's spine surgery with that title.  I have always loved MWS music, whatever God was transforming in his life to write them songs, God was also transforming something in my life that made me relate to some of his songs.

J's anxiety level was higher, but I've not left him overnight since December of last year.  When I got home, he was super clingy to me.  He was home with Grandma and a new nurse.  There were many changes.  We didn't have real good days on Sunday and Monday.  He didn't want to cooperate much with Serena for PT, he just wasn't himself.     

We went to see Dr. Confer on Wednesday to go over test results.  The urodynamics study showed that his bladder is not working, it’s a bag that is holding urine which THIS isn’t new because if his bladder was working he would be urinating. There is no reflux into the kidneys so I am doing a good job of cathing J.  The Kidney Ultrasound, showed no damage to kidneys and they are growing.  The option we have on the table at this time is something permanent where a tube is surgically inserted into his bladder and the drain comes out right above Jeremy's pelvic bone.  It would be like a permanent Foley Cather, so when his kidneys make urine, it would go into the bladder and automatically drain.  The risk for infection is greater because he would have that tube always there, he would always be wet, his bladder would never get full, he would not get that sensation nor would you know if his bladder started to work again.   I told Dr. Confer that isn't an option for J.  I can't put Jeremy through another surgery just for my convenience, I just couldn't do that.  The risk of him getting infection is lesser with him being straight cathed.  He agreed and said with some parents he has to not only recommend but insist because test show they are not cathing their child.  I’m sorry I can’t imagine anyone not taking care of their child’s basic needs.  Dr. Confer isn't saying that Jeremy's bladder will wake up or when nor is he saying it won't wake up.  I have peace that only comes from God and I am not giving up on my GOD to heal my son or J’s ability to recover.

On Tuesday J started having GREAT days, he became more active, crawling around, uses his upper body mostly but he is more and more starting to use and move his knees, standing up as well and starting to have bowel movements without any type of medicine.  J is sitting in the big boy chair like a big boy and interacting with his peers.  He dearly loves Jeremiah this little boy and Jeremiah loves J.  When J walks in Jeremiah comes up to see Jeremy, Jeremy's desk is next to Jeremiah.  It was cute yesterday when I took Jeremy back to class he wanted to sit at his desk and kept trying to get closer to Jeremiah.  Misty sent this picture to me of the boys....

J at his desk watching Jeremiah write... Such a cute pic !!!!

We ended up back in Tulsa for a 4pm with Dr. Scott Cyrus our wonderful Pediatrician, because there was concern over J's knee swelling.   This appointment resulted in a trip to St. Francis Radiology to get knee X-rays.  Jeremy had signed drink when we got in the car so I stopped at a vending machine and got him a pop, what in the world was I thinking.  GREAT idea because radiology waiting area is right next to the ER waiting area.  I think Jeremy can belch the alphabet.  My son belching really loud, laughing even louder and I just laughed with him, course that just makes him laugh harder.  If you came up to the radiology window, Jeremy would wave at you, everyone was saying, how cute he was so and would speak to him.  That just made him crinkle his nose and smile.

No, Dr. Cyrus you may not have your chair.......

J had a good dental appointment this morning, did very well.  We are so thankful for Dr. Winder and his office, Michelle is fast to get Jeremy's teeth cleaned and Dr. Winder is quick to get them all checked.  We did find out that Jeremy's right knee has cellulites, J has had this in the past so this isn't something new to us, it is mild so we are doing antibiotics and will see Dr. Cyrus in 10 days.  I know this is painful, J got this when he was about 5 and he totally quit walking for a few days because it hurt so bad.  I also read where it causes skin tightning so I think this is why J has been dragging that leg around.  

"The peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus." Philippians 4:7

I LOVE this picture, Jeremy was in such deep thought, looking up toward heaven, he was so peaceful.