Wednesday, April 27, 2011

Prayer Request....

Please join me in praying for a couple of families, lifting their request up to our GOD.
Princess Lilly, if you go to the blogs I follow you can click on the link to Princess Lilly's journey.  I strongly urge you to check out her blog.  Lilly is getting ready to have a tough surgery but this will allow her to be trach free.  Her mom is a strong advocate for her daughter.   

Kelly Smith, she is a precious sweet little girl currently in the hospital and is having a rough time.  Pray for her family and mom Karen.  Kelly doesn't have a blog but if you are on facebook, you can search TEAM KELLY and request to join...

Tuesday, April 26, 2011

Follow by email...

I finally figured out how to add this to Jeremy's blog. I added a space at the top that if you want to receive email notification when his blog is updated you can do so... Thanks for following the blog of living in Jeremy World....

Monday, April 25, 2011

Blessed days in J world....

I dropped my car off at the spa resort so it could get a full make-over which included a manicure, pedicure and full body massage and it really needed it.  I was very happy to pick up my KIA rondo that I LOVE to find it looking all bright and shiny on the outside.  The inside smelled good and was thrilled that he was able to get almost all of the tea stain out of my back seat from our last Mommy and J trip to Columbia. I decided that when it was just me and J in the car he would not eat or drink but who am I kidding that is 99.9% of the time.  I purchased J a car-seat caddy, and was very proud of my purchase, reasonable price, found it at Wal-mart.  I attached it to J's car-seat and showed him, one side was for the drink, the other side for his snack.  I get in the driver's seat and get ready to pull out of the drive-way and the caddy comes flying to the front seat. I guess he wasn't overly thrilled with my great purchase. I laughed and had to be grateful with J’s arm and aim that it didn't hit me in the head.

God blessed us with a wonderful nurse, Loveline. Jeremy really likes her and she is good with him, he listens to her.  THANK YOU AND PRAISE GOD and I can't state how awesome it is to finally have help. I wasn't sure how it would be having someone in the house while I was there, I do like a certain degree of privacy, but she is there to take care of J and she's awesome.  J likes his Pandora Internet radio and she listens to worship songs with him.  The agency also said they are sending out a lady next Monday to do an orientation who wants to work 4 to 9pm on Monday, Tuesday and Thursday so that will be extra help with Jeremy.  We are still trying to work with our Special Education Director and get him to approve for a nurse to come to school with Jeremy, that would help Jeremy in so many ways. 

Friday, Jeremy slept until 10am, when she went to cath him she said he was dribbling some on his own....WHOA. J had such an amazing day, he worked very hard at OT with Barb.  I came home started laundry and then went to buy groceries.

Jeremy got up with me on Saturday morning at 8:30am. Loveline arrived at 9am and started taking care of Jeremy got him cathed and dressed. I was able to go into the kitchen, fix my coffee and bake my cake.  When the cake was in the oven, I fixed J’s breakfast and Loveline set down and fed him, she also makes him feed himself.  I cleaned the kitchen, took a shower, got dressed while waiting on my cake to get out of the oven.  I am not a great cook but occasionally get a thought that I am going to try something new.  I found a recipe for a cool, sour-cream lemon cake, yummy sounded good and wanted to try this for our family Easter dinner. The cake looked perfect, came out in one piece so that was a good sign.  I had help at the house so I took advantage of the break and took my gift certificate to Bed, Bath and Beyond to buy some LIVE, LOVE, LAUGH design for my bathroom.  I stopped off at Kohl's to buy me some new shirts, pair of sandals for Easter.  I still have not purchased a new couch, but that is on my list of to do things for this coming Saturday.  I came home, frosted my cake, made my banana-cream pudding, put things up, cleaned my kitchen and went for a 2 mile walk. 

I was able to get up Sunday morning get myself ready for church before Jeremy woke up.  He sit in church yesterday morning, very well-behaved and was looking contently through my bible, he was able to sit through a wonderful welcome song, announcements and then it was over.  We went to Granny and Papa’s after church for our family Easter dinner and it was all so good, I of course ate way too much. My new creation the cool-sour-cream lemon cake with a sour-cream coconut was good, but I got vary reviews.  I thought it turned out dry as did one of my sisters, my mom thought it was fine, one of my sisters said it didn't have enough lemon flavor.  I plan to try it again and see if I can make it more moist.  We played the game Imaginiff and it is always so much fun.  I looked in the other room where the kids were playing some game with the Easter eggs to find J sitting right there on the floor with his cousins and Granny.  He was happy to play a game of spoons with Granny.  Jeremy was down on the floor crawling around almost all day, wanted no part of sitting in the stroller.  I had a very, tired, exhausted little boy when we got home about 6pm and by 8:30pm he was asleep and slept good.

I received a page from his PT about 2pm stating that she was going to go to J's school to see him if that was ok, so we didn't have to travel to Tulsa today.  Serena called me and said he did great.  J continues to make increased progress. I am going to visit families at the Children's Hospital tomorrow, and run by radiology to get a copy of the Cd of J's knee X-rays to take to our visit with Dr. Dan.

Then we leave Thursday morning for vacation, we are talking time away from our life, out of Oklahoma, pool-side and hot tub baby. OK, so we have a 2pm appointment with Dr. Dan for a 6 week follow up. I am SO excited about the trip. I know it requires a medical appointment but that is our life.  Jeremy has really made lot of progress since we seen Dr. Dan 6 weeks ago. The weather is suppose to be warm, sunny and my best friend Kelly and her son, Joe, J’s friend is going. We will go visit our friends at the University of Missouri, Children’s Hospital after our appt. I’m taking pictures this time to add to his blog. They are also going to do a story about Jeremy in their hospital magazine, "Imagine" and going to take some pictures of Jeremy with Dr. Dan and then at the hospital.  We are staying at the Hampton Inn on Clark Lane and I'm not sure what all we will do that evening.  I did tell Kelly we need to show them the MIZZOU football stadium. We will come home Friday morning.

It was a great weekend, much needed break from a busy month we've had and J is basically back to appointments as needed.

Thursday, April 21, 2011

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.  

Tuesday, April 12, 2011

"If I take the wings of the morning..."

"and dwell in the uttermost parts of the sea; Even there shall thy hand lead me and they right hand shall hold me."
Psalm 139: 9 & 10
It was just a wonderful Oklahoma weather weekend.  We took pizza out to Granny and Papas, Friday evening.  I did this because my mom has been wanting pizza since we were in Missouri, but I never could get her to go eat so we brought it with us.  My brother in law was helping my dad top off a tree so my nephews and niece came over to visit.  Johnathan one of my nephews has decided it is now time we plan another sleep-over and then get up to go to garage sales.  I told him I would look at my calendar to see what weekend we could do that.  We had to stop at Walgreen's to pick up J's prescription for his UTI, came home and started laundry.  J slept til 10:30am on Saturday, so I was able to get ready, finish up laundry before Joyce got there at 11am to watch him.  I was getting things ready for Tulsa Sibshops and got excited since this was the first one since January I have got to attend the entire day.  It was time for my routine car service so I made an appointment with the KIA dealership.  J was in a good mood by the time I got home at 4:30, had been playing ball with Joyce.  Jeremy did have a little bit of a tiny wet diaper when I went to cath him.  Then Mr. bright eye and busy tailed woke up at 7:30am on Sunday.  We got up, got him fed, got dressed and ready for church.  We went to WalMart after to buy groceries, in which J was being Mr. funny man.   

We met our home health agency at 2:30 to open up J's case, I am ready.  We are good to go just got to get some nurses orientated and in the home.  Did I mention that I'm ready?  She gave Jeremy a choice of picking one beenie baby, not that he needs anymore toys or objects in the world, but his favorite thing to do right now is sit at the kitchen table and play with his weeble houses.  Jeremy insisted that he needed Chocolate the Moose and Ants the Anteater.....She said, "Oh well you are so darn cute you can have 2"  

J playing with his 2 new friends, Chocolate and Ants
 Mr. Amazing man worked super-de-duper hard at PT.  Jeremy makes increased progress each and every week.  He is getting good balance, sitting with Independence, standing with minimal assistance, starting to improve his gait, moving his legs.  Serena had Jeremy up standing, he took the initiative to move his legs/feet in the walking position.  Once we got home, little turkey wanted out of the stroller, he sit on the floor, did his army crawl and then before I knew it he was up on his knees and had taken a few crawling steps.  His right knee has been swollen, not sure if it's just a stretch issue, something has rubbed it but we are doing ice/hot packs and then giving advil to help with inflammation.   

J taking a few crawling steps

J at therapy, he was moving his legs in the right direction

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.....

Sunday, April 3, 2011

Life's about changing nothing ever stays the same, Part 2 that hurts...

No one said that change was always easy and sometimes change just hurts, perhaps this is the time we grow but that is where my thoughts are at today.   

It's been a wonderful weekend, awesome nice spring weather but on the other hand a tough one for me.  I took Jeremy for a walk in his stroller Saturday and Sunday, we take a 2 mile walk but I so desperately more than anything want him out of the stroller walking around, being the wild child he is.  I have shed many tears this weeknd pouring my heart out to God.  I see children outside riding their bikes, playing til dark and it makes me miss that Jeremy, the one I so desperately want back.  J playing outside in the yard on his playset, coming in, going to the ice-box to grab him something to drink, run back outside.  He has these spurts were he is just literally, totally exhausted.  He did this over spring break, he slept in about every day, but would wake up, happy and in amazing mood  The next week he had an amazing, happy mood, and doubled his progress.  I kept him home Friday and he slept til after 1.  He woke up yesterday in a good mood went to OKC with me, stayed with a friend, played hard, she said he also worked hard, was trying to get his knees up under him and was rolling, he's not tried to get his knees up under him for me since Monday and he's never rolled.  They live in Edmond and we literally crossed from the Kirkpatrick T-pike to Turner T-pike and he passed out.  He slept all the way home and was in bed by 9pm.  I got up at 9am got ready for church but I would wake him up, he kept falling back asleep so it's 10:30 and he's still in bed.  We are missing church, again for the 2nd week and I really need the worship service and the preaching.

J's life has changed, my life has changed but again this isn't the easy part of change when what you were use to is no longer routine.