What has been happening....

Wow, I really let the time get away from me in keeping up with Jeremy's blog.  I am getting 5 new windows installed in the house, Jeremy is at school so it's a good time to sit at my kitchen table with my thoughts and get the blog updated.   

Jeremy had a great 12th birthday, he had lots of visitors and fun.  Here in Oklahoma we have had over 53 plus days of temps exceeding the 100 degree mark, the hottest summer since 1939, I work for the electric company and we hit over 7 different peak days so lets say it has been hot.  I made the decision to have Jeremy's birthday party at his house where it would be nice and cool.  We decided on the transformer theme since it was the newest thing.  We had cake, punch, ice-cream and then a pinata for the kids. I had invited the kids from respite to come over for the fun.  I couldn't decide what to get Jeremy as a present and was going to put money in his savings account but that is not what a kid wants from his mom.  I decided on a Toy Story ball pit, it came with 20 balls which was perfect and I knew he would love it because he loves to throw balls.  I almost bought the bag of 100 balls which would mean that J would have thrown a 100 plastic balls all over my house instead of just the original 20.  He treats the ball pit as a tent, he gets in it and puts toys in it.  He did carry it to bed the night of his birthday so I had to convince him to leave it on the floor. 

We started looking at the fact school was starting here on August 22.  We had a meeting regarding Jeremy's medical issues.  I wasn't comfortable in the school proposal so I held Jeremy out a week to get my thoughts together, get some issues resolved.  I wanted Jeremy to start school, he loves it, his friends, he is so social and progresses.  My first decision was to send him 1/2 days so when he got home the home nurse could cath him, he could rest but then it felt right to send him Tuesday- Thursday all day and he would stay home on Mondays for his day of rest.  Jeremy started middle school as a 6th grader yesterday and went all day so when I got home he was sitting at the kitchen table showing the nurse all his papers and he was so excited.  I went to Wal-mart to buy the supplies he needed.  He had a good first day.  This morning I got to get him ready and put him on the bus, we played ball until the bus came.  I know it will take a few weeks for them to get use to Jeremy and for him to adjust but he does fairly well with change.  He has had a fairly easy, laid back summer.  We have been blessed with amazing home health nurses. 

Medical wise:  We did switch Urologist to Dr. Oren Miller, it was helpful to see him and he was very informative in explaining issues to me.  We will start to irrigate Jeremy's bladder at night and this will help keep his bladder free of bacteria and clean.  He is going to do another urodynamics study and kidney/bladder ultrasound since his first ones was done right after surgery.  We did botox injections which made a huge difference in his upper motor movement, before he was so stiff he had to stand and couldn't move his legs well.  If he was standing and bent his knees he would fall.  It took a few days after the injections to get his comfort level back and he was climbing and now is actually building muscles which is what he needs.  We have started to notice seizure activity so we repeated the EEG and it was conclusive for seizures, Jeremy has the partial seizures where he will just zone out and Dr. Miller our Neurologist says these type normally occur at night.  We monitor him and over the past 3 weeks we've only noticed about 3 so we will keep charting seizure activity.  
   
What new exciting tricks is Master of disaster up to, he is almost a full crawl with actively using his knees and he is fast he can glide across the floor in no time flat.  He pulls to stand constantly, climbing into chairs, turning himself around to sit down, his upper trunk muscles are becoming very strong, he just has a few moments he's lost control.  This past week he decided he would start to take a few steps around furniture so he took a few, which is huge.  He's building muscles and confidence and just continues to amaze everyone and be a miracle.  Jeremy has been so healthy this summer, and knock on wood his last UTI was the first of August.

Here are a few pics of his birthday fun:

Happy 12th Birthday to Jeremy.....

I will forever remember Monday, August 9, 1999, after waiting 8 years, being 41 1/2 weeks pregnant my amazing OB/GYN, Dr. Lunn decided I needed to be admitted and labor induced.  I admit it scared me to have labor induced but this baby wasn't coming on it's own and this was a GOD thing, his plan.  I was woken up early that morning with contractions but it was time to get ready which for me included taking a shower, fixing my hair and putting on makeup.  I had spent the day before totally cleaning the entire house so I was ready and excited.  I took one last view of the baby's room and placed my hand on my tummy and said, "OK baby this is the day, this is it, the moment I've waited so long for and at last after 9 months to see you face to face"  I had dreamed of what it would be like to look into my baby's eyes for the first time.  I didn't know if I would be bringing home a Kayla Dawn or a Jeremy Ray.  We arrived promptly at 7am and was excited to be hooked up to the monitors and see the baby in birth position.  Dr. Lunn came in at 8am to break my water, talked for a bit about the day and said she would be back.  The nurse came in shortly thereafter, put me on my side, gave my oxygen to see if it would raise the baby's heart rate and left.  I honestly didn't think anything about it because they told us in birthing class that could happen.  The next vision was the nurse come back in with a guy in a mask and say, "Dr. Lunn doesn't like what she is seeing and wants to do an emergency C-section" now that scared me.  Dr. Lunn came in to explain that the baby was in fetal distress and needs to be delivered.  I calmed down.  It was amazing at exactly 9am, I could hear my baby cry for the first time and was told we had a baby boy and after they checked out Jeremy I got to see him face to face, glance into his eyes and wonder what is he thinking.  It was God's plan, he knew J was going to be born on August 9 and with hydrocephalus, so me being induced allowed us both to be monitored instead of me being home and going into labor so the first sign of distress we were off for a C-section.  Jeremy didn't have a traumatic birth experience.  I can't imagine my life without Jeremy and can truly understand the dept of a mom's love for her son.  Happy Birthday to my amazing son, Jeremy Ray and I am grateful beyond words that God sent you to my life.  You have inspired me, taught me more than I could have ever learned on my own....

Last year....

I was putting my precious boy to bed Saturday night, he was exhausted from the weekend fun we had at the OGE lineman's expo.  His little precious face and it made me think of where we were at this time last year.  My life was rocked and I was living one of worse nightmares 358 miles away from home in Columbia, Missouri at the University of Missouri Children's Hospital.  Jeremy had survived the anteior release surgery but we were running an MRI to check for a spinal cord injury and he couldn't maintain his blood pressure so it was a trick to get him to the MRI machine, plus to sedate him.  They didn't know why J wasn't moving his lower extermities but it was a concern at that point.  I was getting Jeremy ready for church on Sunday morning and thought, man I really hate scoliosis and what it has taken from Jeremy and how it's changed our lives.  When we got to church they had announcements and J's birthday was in the bulletin.  The preacher asked us what we were thankful for, some mentioned but in my mind I was thinking, J and he's turning 12 this year and much as I hate scoliosis, what about all the doctors who have dedicated their lives to finding and treating scoliosis.  Our Dr. Dan came to my mind, who after already leaving, when Dr. Robertson called him he came back up to the hospital, cleared the hallway for Jeremy, stayed with Jeremy while the MRI was going on, and talked with me on the results and offered to take my mom to the motel room.  I seen this doctor with great concern over the next 12 days try to figure out why this happened, what it meant and how do we treat it next. 

This was our OGE lineman's expo weekend since we missed last year for the 1st time in 9 years I was so super excited that we got to go.  I got to say this was the best year for Jeremy, he had so much fun and really enjoyed it.  My best friend, Kelly and I always volunteer to work.  This year we thought we were settling for the snow-cones but decided that it rocks and that is what we are going to work in the future.  Due to extreme heat everything was moved up an hour, so we worked from 7am to 9:30am.  My 3 nephews went with us and on the way to Oklahoma City I could hear Jeremy in the back seat laughing.  He had a good time and lots of fun.  We went swimming in the pool.  Jeremy loved the swings and where I was working I had a front row view of him, I could see him pushing his head back, laughing, kicking his feet.  He enjoyed the jupiter jump, went down the slide a few times with my nephew.  He went to the petting zoo, he huged a baby kangaroo, petted a wolf.  Jeremy was so tired by the time we left at 11 he didn't even fight me to put him in his car seat and 30 minutes on the road he was passed out.  He only slept about 30 minutes because I had to stop at Stroud for a break and he woke up.  My sister came and got the boys about 3pm and we were both exhausted.  I found Jeremy about 4pm, sitting on the kitchen floor upright with his head slumped over he was worn out and had fell asleep.  I put him on the couch and he slept til 8pm, got up to eat a bite and then I put him back to bed.  I enjoyed the nice quiet house and my own bed after sleeping in a bed with 1 nephew and Jeremy it was nice to have my bed.  

Here are a few pictures of the fun....

I love this

Home of the "orange" OGE Proud ! 

Yes, J was holding a baby kangaroo

J on the swings (you can see his blonde head) he loved it

 

My lack of faith....

"Your father knoweth what things ye have need of, before you ask him." Matthew 6:8

This is my typical human behavior sometimes.  I pray and ask God for something, I don't wait on the answer or I get an answer but don't think it's the right one.  I asked God for the verse to start the blog and this was the first verse in my box I read, I thought no, stuck it back in the box, shook up the box twice and each time it was sticking straight out.  I actually focused on the words the second time around.  

We had to make an adjustment back to real life this week after playing for 3 days of last week and taking a break.  It was a little tough on both of us.  Jeremy did excellent for PT on Monday morning he worked really hard, he then had SLP and OT with no time for a nap.  I had volunteered at the Children's Hospital to help take some of the Tulsa Shock players around and then I visited with families.  I arrived home to a very tired little boy.  Tuesday, Jeremy had OT, SLP, his new nurse started and his dad came to visit him, there was lot going on and no time for a nap so he was totally exhausted.  J hadn't been sleeping well this week, his tone is changing, his legs twitch at night or while he is trying to rest and he will stretch his legs out as far as he can.  When the nurse went to cath him on Tuesday she got a large amount of white sediments, Cyrus sent it for culture.  J never ran a fever, he was tired, acting fine and was wetting diapers like crazy.  When we cathed him that evening we got some white sediments, since that time is urine has been cloudy but each time it gets clearer.  I have been putting J to bed early for him to get extra rest, pushing water through him, he's still not ran any fever and we are back to no wet diapers.  I was excited to get to attend the in-service that Dr. Mark Willits, New Pediatric Ortho surgeon for St. Francis Children's gave to hospital staff yesterday evening.  I'm excited of the positive change this is going to bring to so many families.  He is family-focused, not afraid of complex children with syndrome diagnose and mentioned he had got with Engineering on building a wheel-chair and walker for halo traction.  

We are now almost down to count-down of 3 weeks until J is a big Middle school boy.  I'm praying that Misty, J's Para for the past 3 years and HTS for the past 2 years gets to go with him to help ease this transition plus he will continue to progress.  Misty has worked so hard with Jeremy this summer and because of her hard work, he's had an amazing summer with so much progression of skills he had lost over the last part of the school year.  J will not know what to think if Misty isn't there.  

Here are some pictures of J's week.   



Mr. attitude







Happy J



Working on Nook



He fell asleep after Misty took him out of gait trainer

Life skill-brushing teeth



    







Vacation 2011

We left Wednesday morning around 8am, we made it all the way to Lebandon, Missouri before stopping for lunch about 12:30am, then a drive down the street for our first Dairy Queen stop.... Oreo cheesequake oh it was good....

J wearing his crown eating lunch 





OH yea baby.....

 

Then we headed to Camdenton, Missouri to check into our motel and go to the Orion Science Museum to play for a while.  I had checked out their website and figured Jeremy would enjoy the hands-on, it was really just to hot to do any of the outside activities.  Here are some of the things we did.  The little guy at the end, was so cute and I wanted to take him home.   

Moses and the burning bush

Granny, I told her to stick her finger in there...

My new boyfriend, didn't realize he was from Star-Wars.  Don't we look so happy



Yes, Jeremy searched out a ball



J and Granny doing a puzzle

J doing a puzzle...

David and the stone, I was telling J the story

We then went back to the motel, we were hot at that point and was going to wait on our friends, Kyle & Heidi, Maydsen and Zayden to arrive and swim with us at the pool.  We had a great visit with them, and I got lots of loving from Zayden, I love that little guy.  They opened up their birthday gifts, Jeremy got his birthday gift as well.  We then ordered pizza from Pizza hut and was in bed by 9pm. 

We left about 10:30am to head for our appointment but first stop was the Osage Beach outlet mall, I like the Gap outlet, got 4 new shirts and a pair of jeans and then on to Columbia, Missouri.  We grabbed lunch at White Castle and then on to Dr. Dan's office.  Dr. Dan was pleased with all of the amazing progress Jeremy has done since we saw him in April.  I hadn't told him that Jeremy was starting to take steps with his walker and Jeremy did take a few steps in his walker for Dr. Dan and he said, "you are just a miracle".  The scoliosis has not progressed so he wants to continue to allow J more time to progress until we have to fuse the spine, he wants Jeremy to get some longer AFO to help support him.  Great appointment and what I really expected it to be.  We go back in 3 months.  We left his office, headed to Buck's http://bucks.missouri.edu/.  I had a friend from Columbia tell me about it and it was right down the street from Dr. Dan's and on our way to Children's.  They make their own ice-cream right there on campus and it was yummy, J got Cookies n' cream, I settled for Rocky road, and Granny- strawberry-banana yogurt.  We got to the 5th floor and was greeted by Kelsey, Lauren, and not to far was Caitlyn, Corrine, Amber and then J's favorite nurse Shelley showed up and he was in heaven with all the attention and they were feeding him ice-cream.  I am again not sure why I didn't snap a picture of that.  J took off crawling right into the playroom, where he felt right at home and Lauren played ball with him and then she took us to the PICU.  We got to visit with several of the nurses and Dr. Wankum.  We left and headed to our motel and shortly thereafter our guest, Julia and Mr. David arrived with their nurse.  We visited for a while, gave David his birthday gift and Jeremy got a new book, gun with balls so he was in heaven.  We then went down to the pool, played a game of water volleyball with another girl there, sit in the hot tub and Jeremy was having fun in the pool there were several beach balls around.  David was getting tired and I was exhausted at that time so we said our good-byes, I tried to get some pictures of the boys but Jeremy wouldn't cooperate.  I walked across the street to Burger King and grabbed dinner.   

We got up the next morning, loaded up the car and started our 6 hour journey back to Oklahoma.  We stopped in Lebandon at the Dairy queen as our first rest stop, double chocolate blizzard baby along with strawberry lemonade and I-44 to Tulsa.  We arrived home at 3:30pm and I'm not sure who was more tired me or Jeremy.  Jeremy raided the fridge, he hadn't ate a great deal on the trip so I just let him snack.  Papa had bought us up a 1/2 watermelon and 2 small cantelopes that I cut up and J snacked on them, and they were nice and sweet.  My OCD self got everything put in it's place, started laundry, got all my trip receipts recorded in my check-book and then we laid on the couch and we were both asleep.  We were in bed before 8pm.  

The trip was fun, relaxing, whatever, whenever, seen so many of our friends but it was good to get back home........

A short week....whatever, whenever....

Thank GOD and Praise be to the LORD for this short week upon us.  Jeremy has worked hard, he had PT, OT and SLP all in one day and it wore him smooth out.  He is using the walker more but you still have to put him in it, he is taking steps and he started yesterday to stand and put weight on the one leg that he has not been using.  He had OT and SLP again today but took a good long nap.  We are now once again fully staffed with nurses, what a relief.  The one we have had a few days and I was beginning to doubt yesterday that we would keep her, I guess Friday and Saturday was a learning curve and yesterday she was awesome beyond words.  Jeremy is also home with the HTS, Misty through the week and being his Para for the past 3 years and summer HTS for the past 2 summers she knows him well and has been a beyond help this summer for me.  We orientated a new nurse yesterday, Jeremy responded well to so we will see when she starts on Monday. 

I "officially" will be on vacation for the next 3 days and I can't tell you how desperately I need this.  We will leave in the morning for a leisure 3 days away from our life.  There are no agendas, therapies and nothing to coordinate, the theme is, "whenever, whatever" (guess what movie that came from?).  We are traveling over 1/2 way tomorrow and will have fun along the way, and then meet up with some friends tomorrow evening probably at the motel for some swimming.  Just rest and relaxation baby.  We do have one appointment to keep on Thursday to see Dr. Dan, which is the purpose of the trip.  I'm so excited for this appointment, he doesn't know that Jeremy has been taking steps with his walker, I'm taking the walker on the trip and hope he will show off his new tricks.  We of course have to go visit all of our friends at the University of Missouri, Children's Hospital.  Then that evening we will meet up with some more friends at the motel for swimming, and good times.  I'm taking my camera and plan to actually take pictures this trip and will post next week. 

All in a Jeremy week....



J got up on his bed, after breakfast.  Misty started singing ten on the bed



and the little one said, rolloever he was rolling on his bed

J standing waiting on lunch

The amazing, J.  Misty set him on the fold down chair, he stood to the walker, smiling and took a few steps on his own. 

J taking a break watching Toy Story, he loves the computer

Happy J standing

J eating lunch