Sunday, May 29, 2011

Getting ready for Summer 2011....

Jeremy graduated 5th grade on Thursday, May 26 and had his 5th grade fun-day on Friday, which he had a blast that was his last day of school so he is officially out for the summer.  He came home from school and took a nap he was worn out.  He got up bright and early with me on Saturday morning.  I started my Memorial day routine which is cleaning and organizing to get ready for the summer months of him being home with staff.  J watched me clean out the carport while he listened to his Pandora internet radio.  There were piles of leaves that blew in during the fall/winter months and I hadn't had time to get out there to spend time getting them picked up.  That was a chore that is now finished and it looks nice.  We got the back patio cleaned off.  We went to church on Sunday morning and came home to start the task of cleaning J's room.  I'm sorry to say that 3 bags of mis-matched or broken toys didn't make the cut and got thrown away, but you can actually see the floor in his room.  I also stored some toys in his closet for the church garage sale.  We then went in search of a patio set.  I've been saying since spring I was getting us one, but hadn't seen any I liked plus I really needed to get the roof replaced first.  We found the perfect one for us at Westlake Hardware, nice table and 4 seats.  J likes to play outside, his kitchen set is on the back patio so he can play out there in the shade and this will give me a place to sit or staff while he is playing.  I told him we would have to eat our dinner out there some evening.  
J and mom

J with Papa

J with Miranda (cousin)

J with Aunt Angie

J mad, when he woke up the picnic was over

J picnic

Happy J

Thursday, May 26, 2011

Train up a child in the way he should go !!!!!!!

An inside view of living life in Jeremy world on a daily basis....

The Tasmanian devil spun a web of destruction leaving a path of magazines scattered and torn in my living room.  The thing is I don't know when this occurred.  It was under my watch.  I don't know if it was because I was glued to the TV on Tuesday watching all the tornadoes rip through our area that I didn't notice or perhaps when he finally came to bed he stopped on his way.  I didn't even notice it when we left for school/work yesterday but we are normally rushing out the door.  I came home yesterday evening and it hit me in the face, I had to giggle and ask, When? Why?      

I ran a few errands yesterday evening, Jeremy was home with his nurse Freda, whom he really loves.  I get home and boy was I in trouble.  Here comes Jeremy crawling into the living room, really telling me something, not sure what all he wanted me to know but it was important.  He's had a few days of being Mr. Boss man.  The bus driver said he got on to her when she was telling one child to sit down and put on his seat belt, and his para said he was helping her boss the children around yesterday.  Mr. Big boy 5th grader.  I follow him to the bedroom where he has a magazine open, doing his little pointing finger at a page thing he does, like look at this, now.  This is just funny and I laughed, the article was, "How to raise a good man".  I looked at him and said, "am I not doing it right" he puts his little hand over his mouth and chuckles....I would have loved to crawl inside his head to know what he was saying, and his thoughts....

This morning the Taz devil almost gave me a heart attack.  We are driving to latch-key, radio blasting, I'm singing, turn around to sing to him and talk about his day and HE WASN'T IN HIS CAR SEAT.  I would like to think I would never be too busy or preoccupied that I would forget my only son, but it caught me off guard and just for a second that was my thought, where is Jeremy did I forget him.  He got out of his car seat, which requires un-buckling his car seat belt (I didn't have it latched tight) and under the car seat.  He was sitting in the floor board laughing.

This song is titled, "Lead Me" by Sanctus Real, I've been hearing it for a few months and it really has impacted my thinking.  I am currently the leader of our household so it's made me think am I chasing things I can do without therefore putting Jeremy at risk to not be lead, not standing up for him since he can't stand up for himself, loving him so he feels my love.  GOD please lead me so I can lead him....

.....even when he is old he will not depart from it. Proverbs 22:6

Wednesday, May 18, 2011

They that wait upon the Lord....

“They that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles.” Isaiah 40:31

I have temporarily went back into the phase of crying out to GOD, with the why’s and it’s not fair. I know God hears me and I know he is healing Jeremy, he is doing it his way, and his time. I am working through the wait upon the Lord for his perfect time, his perfect way and that is the only reason I have any strength.

Jeremy is doing AWESOME, he is being put in the stander more times during the day, longer durations, he chooses to pull up to some things and stands on his own, he is more actively using his knees to crawl in the proper crawling motion. He is being put in the gait trainer at home on weekends, got to admit he’s not overly fond of that contraption and normally when he hears the wheels clicking he says, “NOOOOO”. The nurse situation is going very well, we currently have 3 nurses. Freda is there Mon and Thursday afternoons, Jeremy dearly loves her, she reads to him and treats him like a person not a patient, takes him outside and plays ball with him. Then there is Matt our newest, Jeremy dearly loves him, he takes Jeremy outside also, he’s like a big kid and again treats Jeremy like he is a person just not a patient.

We had a nice leisure Friday evening but hit the floor running Saturday morning. I awoke to a little cold front but it was nice, started laundry, made coffee and Matt arrived at 8am and Jeremy slept until 10am. I got laundry done, fridge/freezer cleaned out, house clean and then had to leave about 11:45am to get things ready for our last Tulsa Sibshops. I had to pick up pizzas, get 500 water balloons filled (not sure where my thinking was because the water balloons are cheap and I ended up busting ½ of them on me so I proceeded to regular balloons that unfortunately do not bust as well, so probably a good thing it was a little cooler that day.) We had 12 super sibs, the children had fun, ate pizza, made up games, talked about people first, the campaign to stop the “R” word, had ice-cream cake. I had my niece’s high-school graduation that night, so I stayed in Tulsa. I am very proud of Brandi Nicole, when she was about 2 or 3 year old, she blurted out an order, “get me something to drink” I commented, you are going to be just like your Aunt Lora, so that started her saying, she was going to be just like her Aunt Lora and I always had her saying, I was her favorite aunt and she was my favorite niece. I arrived home shortly after 10:35pm and my little bug was still wide awake, I think he had to wait to see if I was coming home, because he went right to sleep.

We seen Dr. Cyrus for a re-check on our UTI and he put J on ditropan. This medicine will start Jeremy’s bladder to work, he will then cycle him off and see if his bladder is working on its own. I also asked Cyrus about something for contractures, Jeremy’s muscles are so extremely stiff especially through the night and mornings. He tosses and turns, you can feel his legs twitching, jerking so I know he is having muscle spasms. I have tried, getting him to eat bananas, yogurt, tried Tylenol, Advil, asper-creme and nothing is working for him. Jeremy wakes up each morning with his knees up to his chin and you can’t hardly force his legs straight and it’s hard to cath him in the mornings because his legs are so tight. I know it’s painful for him, he’s isn’t sleeping well. Dr. Cyrus is trying Jeremy on bacoflen, it is a muscle relaxer. I have noticed that Jeremy is sleeping more peacefully, he wakes up stiff but I can stretch him out, he gets down, stands by the bed and then takes off crawling.

“Great is our Lord, and of great power: his understanding is infinite.” Psalm 147:5

Wednesday, May 11, 2011

CONGRATULATIONS to Jeremy Ray for graduating 5th grade....

"Blessed are they that hear the word of God, and keep it." Luke 11:28

Precious baby Jeremy

I can't believe that my precious baby boy, Jeremy is graduating 5th grade.  We are closing the chapter of Elementary days and opening a whole new chapter of Middle School days....I've been asked are you ready, but I don't think moms are ever ready for their babies to grow up.  I've always celebrated each milestone and each new chapter in Jeremy's life.  Jeremy has really matured this past year, he is developing a little personality and I'm finding that he is going to have a good sense of humor.  I want him to be happy, healthy and secure in who he is.    Jeremy has also progressed motor wise and I am going to push him and want him to walk across the stage to get his diploma....
Jeremy's graduation picture in his cap and gown....
Jeremy's 5th grade graduation, Thursday, May 26 at 6:30pm, Jefferson-Heights Elementary anyone is invited to come see J graduate....

"Thanks be to God, which giveth us the victory through our Lord Jesus Christ."  1 Corinthians 15:57

Monday, May 9, 2011

Happy Mother's day 2011 to me...

Jeremy has been showing me for several weeks now in the evenings that he can officially slide off the bed, the way he does it cracks me up. I put him on the bed to cath him, when I’m finished he looks at me the entire time he is sliding off the bed, he stands on his legs by the bed, then gets down on his knees doing his ornery laugh and takes off. If he was speaking it would be something like this, “mom as you can see I can now slide off this bed, so you can no longer contain me in this spot and I am going to keep doing this.” Jeremy should realize after me being his mom for almost 12 years that I relish each motor improvement he has ever made, if sliding off the bed is his thing, he is standing on his legs, going from legs to knees, getting up on knees and crawling so I always say…WHOAA.

When I get up in the mornings he just rolls over and goes back to sleep. I get up Sunday morning to start getting ready for church, J rolled back over so I knew he would go back to sleep. I am taking a nice, hot, quiet shower and I hear the toilet flush and water pressure drops. It is just Jeremy and I in our house, so at first I was startled but I peek outside the shower to see J sitting there, quietly, not only flushing the toilet but holding it down, laughing. He then moved on to another part of the house and played until it was time to get him ready for church.

I honestly do not know why Jeremy does these things.
J with me and my mom

Me with my mom

Thursday, May 5, 2011

“Once you Choose Hope, Anything’s Possible, by Christopher Reeves

I found that saying when I purchased a shirt for a fundraiser to support Isaac Walsh, J's Principal son who was recently diagnosed with a cancerous brain tumor.  I remember watching Super-man and thought wow he is such a hero, look at all the people he saved.  I realize there is only one true super-hero that is truly saving all these people and it's my Lord, Jesus Christ, God of my life.  I remember when Christopher had the accident on his horse and suffered a spinal cord injury he became a super-man in person, he never gave up fighting and was an inspiration to many dealing with similar issue. 
I live in Jeremy World, this is my reality and life with Mr. Pitt bull, determined Jeremy who spins around the place like Taz.  Taz was my favorite cartoon character, maybe that was why because God knew from the beginning he was going to give me a son like Taz.  J spins around like Taz, leaves a whrilwind of destruction in his path, jabbers like Taz and probably saying, catch me if you can, because I'm on the go and not slowing down for you......   

J's para sent me a text yesterday that he was leaking when she went to change him,we celebrated.  When I was getting him ready for his bath last night he had a wet diaper, he even leaked all over my carpet, we celebrated.  He had a night of legs twitching, him tossing and turning he woke up with a diaper soaked from front to back, we celebrated.  I verbally plead the blood over our house, each night, my heart, soul mind and body, Jeremy's heart, soul, mind and body and then I thank God for the healing he is already doing.  Some people say we evolved from monkeys, but the human body is this complex machine that some physicians who devote their life to studying can't answer questions, the answer is God created this complex body. 

The nurse informed me last night when I got home that J literally climbed his rock wall by using upper body and she supported his lower body.  I told her let him get up there.  J doesn't want to sit in any chair, he can and will get down to army crawl all over the place pretty much all the time.  He is starting to more and more pull his knees up under him and actively use them.    He is also wanting to stand more, he will stand at his desk at school, table at home and yesterday he pulled himself up out of the car-seat on the bus and the driver and assistant helped him to walk as much as he could off the bus.  J has determination and hope.   

We are approaching Mother's day, a day we sit aside to honor mother's.  On August 9, 1999 at exactly 9:00am, after 8 plus years of waiting for God to bless me with a child, I gave birth to a 5 pd 3 oz, 17 1/2 inches long via emergency C-section an amazing little boy, I truly didn't know that day just how amazing he was going to be.  I loved the baby from the moment I found out I was pregnant and so enjoyed the life inside me.  J was born with blondish curly hair, beautiful blue eyes and the moment I was able to see him, look in his eyes through the tears of joy, wondered what was he thinking as he looked at me (he's non-verbal and I still wonder what this boy is thinking).  I'm sure he thought and still thinks, oh this is my mom.  He was always active spinning around like Taz.  I have done my best as Jeremy's mom to lead him back to our creator God, I advocate for him, raise him in a way that will teach him, hope, faith but God uses Jeremy to teach me and keeps using him to lead me back to him.  I will never give up hope in Jeremy, I may get discouraged when things aren't going as fast as I would hope.  Jeremy doesn't give up, typically developing toddlers just wake up one day and start walking, but how many children have had to work so hard and learn to walk 3 times in their lives. 

I wrote this poem for my little angel boy on June 12, 2000, he was almost a year old and we were going through the process of getting major open heart surgery scheduled.  I was scared, he was in congestive heart failure, failure to thrive, had 3 separate heart defects that had to be repaired and I was afraid he wouldn't survive.  I was going to loose him and life live without Jeremy.  

A Mother’s Angel

On Aug 9, 1999 an angel came to earth
He came through the way of a miraculous birth

This angel had blond curly hair and beautiful blue eyes
Instantly his mom fell in love with him and started to cry

He had some problems so intensive care he would stay
He was the best baby there for calm was his way

In the 1st year of life all the tests he would go through
But this angel never complained a trooper so true

God answered the prayers of the people who would pray
God has a special plan and will use him in a wonderful way

He has used him to bring glory and honor to his name
The lives that he touch will never be the same

No matter what he battles and all of the strife
He is the very love of his mother’s life

The angel is a fresh breath of air, a ray of sunshine
He is just a little doll and never does whine

He just has this charisma that draws people to him
When you are around him the world is not dim

He has the cutest smile for anyone around
To hear him laugh and talk is a beautiful sound

So heaven lost an angel on that very special day
But it was to earth’s gain named- Jeremy Ray

Wrote for my little angel boy - Jeremy Ray on June 12, 2000

Tuesday, May 3, 2011

The days of living with funny J...

“Thy word is a lamp unto my feet, and a light unto my path.” Psalm 119:105

Jeremy has been in such an amazing, happy mood and has became quite the little comedian. He wakes up happy (well except for school days he doesn’t like to be woke up at 7am) but once awake he is happy. He has been talking up a storm and back to being a little busy body. Jeremy has not been on ADHD medicine since March and I am loving Jeremy not on the medicine.  He eats good, weighing 47 pounds, talking like crazy, Mr. Personality,active, moving around in the way he can, not afraid to try new things and he sleeps well. Our trip to Columbia was fun, J had so much to say about everything. His favorite word continues to be, “no” but he says it in such a darn cute way and the occasional he throws several “no” into one big "NONONONONO".  Dr. Cyrus found it funny to hear Jeremy say, “NO” or to ask Jeremy a question and he would do his growl or scream but then when you look at him he would laugh.  J had a new nurse last night who was awesome, she got down and played with him, I was able to go to the bank, drop off his prescription, get my check-book balanced, fix a healthy dinner (although my sister informed me you can’t really use healthy and Hamburger helper in the same sentence but I have to disagree, it was whole wheat and I used ground turkey). J worked super hard in therapy and school yesterday. He is standing at his desk on the one leg and doing it longer, he wants down on the floor to crawl, he still does the army crawl but is getting his knees under him, has more control and does occasionally use his knees in the crawl motion. He was cracking me up last night, he got in his backpack in the living room, took out his extra pair of shorts took off to the washer put them in, shut the door and says, “I wash this” it was so funny to watch and after a while he took them out of the washer and put them in the dryer. Mr. Observant who has seen me do this a 100 times and when he was up and mobile it was nothing for him to help me put laundry in the washer, take it out and put in the dryer.

I am grateful for a slow week, it is nice to have a nurse in the evenings to help me out. This means I can do my OFN paperwork, call my parents and not have to save it for when Jeremy was at respite.  Jeremy has no scheduled appointments this week, actually his next scheduled is when we go see Dr. Dan in July.  I have UBC meeting on Thursday and will visit families while I'm at the hospital.  I scheduled an OFN care notebook/supporting parent training on Saturday and then a resource fair to follow. We will celebrate Mother's day on Sunday, get up go to our church then out to my parent's to have a cook-out.
When we first got home in February I was like a duck in the water, I may have seemed calm on the outside but underneath I was paddling for survival.  I was for the most part, stressed, fighting to keep things straight, get Jeremy to all his required appointments, most nights I would literally drop into bed of exhaustion and a nurse would had been helpful.  I'm not sure why it happened that way, what God is trying to teach me, perhaps fully rely on him for strength.  I can say only by the grace and strength through God I made it to this point.  At this time in our life, Jeremy's world has slowed way down and now I have all this help, perhaps it's because I can truly sit back and appreciate the help I'm receiving and fully utilize it to rest.

“Thanks be unto God for his unspeakable gift”. 2 Corinthians 9:15

Sunday, May 1, 2011

Our Return visit to Columbia, Missouri.....

We had such a beautiful day to travel back to beautiful Columbia, Missouri to see our super-hero Dr. Dan,  his wonderful assistant Holly and all of our awesome, caring friends at the University of Missouri Hospital.  We left Sapulpa promptly at 7am.  I was so glad to have some traveling companions along for the ride, my friend Kelly Hamilton and her son Joe who is one month younger than Jeremy.  They love J so much and Joe is the most compassionate, caring young boy and is very good with Jeremy.  It was truly a beautiful, pleasant trip.  When we arrived was surprised to see Lauren, social worker come out, she had an appointment that day.  We got to visit for a bit, she told us that our little friend Rylan was back in and they wanted to see J.  We were neighbors with Rylan for many days/weeks while we were both on the floor.  Rylan went home days before J had surgery but came back shortly after, but we were in the PICU so by the time J got to the floor they had already went home.  I have attached Rylan's caring bridge under the blogs I follow.

The University photographer, Jeff was there to take some pictures for the children's magazine article.  He got some great pictures of Jeremy with Dr. Dan.  Jeremy likes to get the doctors chair on wheels and then he hides under the table like if I'm under here you can't see me so I'm not here, he is so funny.  Dr. Dan came in and got under the table with him.  Jeff got a good picture and J was looking like this is fun.  This was the most interactive I've seen J with Dr. Dan.  Jeremy got to flirt with Ms. Holly who he just adores.  Holly has done so much for us.  Dr. Dan spent a long time going over recent issues we've had.  He is happy with J's progress but wants to continue to give more time, the scoliosis isn't progressing, he felt the urologist would had put J on something to relax his bladder so he recommended I talk to Cyrus about that, he seen no bone issues with the knee from the last x-rays so caused him no concerns.  He wrote me PT orders so we proceed and press forward.  He liked the idea of knee pads, getting J a knee mobilizer and the walker.  I trust that man because he has proven over and over he is not doing anything but what is in J's best interest.  I was glad that someone else from Oklahoma got to see how truly amazing, compassionate Dr. Dan and Holly are.   We go back to see him on July 28 for a visit in clinic. 

Jeremy with Dr. Dan under the table
Jeremy with Dr. Dan
We left there went to the Media Center so I could record a short video as a Thank you to all the nurses who provided care to J while he was there.  Jeff asked me if I would do when we talked about taking pictures and I told him it would be my honor and could never do enough to thank them for all the wonderful care they all provided to Jeremy.   

Then the trip to the hospital to visit friends.  Kelsey, PT who Jeremy just dearly loves, she got him his favorite purple four-square ball so he was happy, he loves playing with her.  Corrine, Child life came out and played with Jeremy and they sit on the floor to roll the ball to him.  Lauren came by but since she had recently had knee surgery she couldn't get down on the floor but she kicked the ball with him.  Then she went and got Rylan and his mom, Rylan sit on the floor and played for a little while but he was so tired, didn't feel good so he went to his room so I got to visit with mom for a bit.  Kelsey and Corrine took J into the playroom so he was literally in heaven, he played for a while.  I was sad that our nurse Shelly was off that day so we didn't get to see her.  Jeremy was being so much full of his ornery little, boy self and was in heaven with all the attention.  

J crawling with Kelsey, he loves her

J with Kelsy, Corrine walked up with a baby

J with Kelsey in the playroom, he loes her

J with Corrine, in playroom.  Child life specialist are AWESOME
Corrine took us to PICU to visit.  We got to visit with Liz, we had Liz back in August, she was so good with Jeremy and we dearly love her.  We never got her this time around, but she always would step in say hi and she is always so happy.  We got to visit with Dr. Wankum, PICU doctor we love her.  Dr. Burney wasn't there that day. 

J with Liz

J with Dr. Wankum, PICU doctor(she is awesome)
  We then went and checked in the motel.  Kelly and I was unloading the car and the wind caught J's beach ball and off it went.  I was chasing it across the parking lot in heels and I'm not the most graceful person so plan one was take off my shoes so I could run, plan 2 was throw the shoes at the ball to stop it.  The ball hit my sandals and flipped right over it and kept going.  I chased it into the next parking lot and luck have it a big rock stopped it or we would have said bye bye because there was a steep incline.  I'm sure the people at Burger King got a good show.  I was just proud that I didn't trip and fall since I'm also clumsy.  We decided to walk to Burger king and get something to eat, we then hit the pool and hot tub.  Jeremy loved that, he played in the hot tub and in the pool.  I'm sure it felt great on his stiff legs.  I think we were there for close to 2 hours.  We got up Friday morning and enjoyed a nice breakfast at the motel and said good-bye to Columbia.  It was such a beautiful day to drive.  We stopped at the Outlet Mall in Osage Beach.  I think we both got some really good deals at GAP outlet, I love their clothes but am too cheap to pay full price.  I got some good deals at bath and body.  We headed home and arrived home about 6:30pm.

We stopped in Joplin, took a break and grabbed some snacks.  I decided a fresh brewed cup of coffee sounded good.  I had Kelly to drive, it was nice to share that task with someone.  We were about 60 miles from home and don't ask me why I did this but J wanted my cup.  It had hot coffee in it so I put it in his cup, filled it up and there was a small amount that I mixed with some leftover ice tea. OK it sounds awful but he really wanted the cup with the lid and he did drink some.  He decided he didn't need the lid and I should have seen this coming.  If you remember the post about the snack/cup caddy I hear, "OH NO Jeremy" and yes he spilled that cup of coffee, it went in Joe's seat so the poor boy had to sit in coffee and we used blankets to help soak it up which seemed to work.  When we got home I put my stain remover on the seat and it seems not to be stained. 

J slept til 11 this morning.  I got up to finish laundry, drink my coffee in a nice/quiet peaceful house and waited for the nurse.  I then went to Tulsa to run some errands, go buy groceries and came home and enjoyed a nice nap.

J has about a month left of school and graduates 5th grade, so I'm going to make a big deal of that.  We are going to enjoy Mother's day, my niece graduating High school.  We are going to press forward, life life day by day, enjoy life and continue to allow Jeremy to progress.  I know GOD has a time and a plan for J so we are just rolling with life.

Joe with Truman Jr. Mizzou Mascot, bench as you enter the children's Hospital