Friday, July 29, 2011

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


Saturday, July 23, 2011

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........

Tuesday, July 19, 2011

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. 

Friday, July 15, 2011

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

Monday, July 11, 2011

"Call unto me,

and I will answer thee."  Jeremiah 33:3
The moments in Jeremy's life as his mom would literally knock the breath out of me, send me crashing to my knees, looking straight up and no doubt there is a God.  I serve a God who loves me and Jeremy to his very core, so much that he took our place in death to provide an everlasting life....     

Monday, August 9, 99, as I am recovering from an emergency C-section that would bring into this world, my world, my little boy, Jeremy Ray who would answer a 8 year prayer of me being a mom and mom to a little boy.  Our family all around, Jeremy was doing well and so much joy all around.  It was 12:30pm an open of the door brings in Dr. Scott Cyrus, I introduced him as Jeremy's Pediatrician and with the words, I suspect your son has hydrocephalus my dream was busted.  Wednesday, August 23, 2000, 8am, very nice surgical nurses take my barely 1 year old son, weighing 14 pounds out of my arms to take him back to prep for major open-heart surgery and repair 3 separate heart defects.  Our family all around, I broke down with fear that I would never see my baby alive again.  Friday, August 6, 2010, 6pm, a different state, new town, a new hospital and the only person I knew was Jeremy's surgeon.  My mom was with me, had slipped downstairs to get us something to eat and I was making plans to go to the motel to get some rest as Jeremy was stable and resting.  I was alone with the thoughts, glad to get this surgery out of the way.  Then a quiet slip into the room by Dr. Daniel Robertson, didn't even know who he was and the quiet spoken words, we don't know why Jeremy isn't moving his legs but I've spoken with Dr. Hoernschemeyer and he wants to do an MRI to check for a spinal cord injury, do you have any questions?  Friday, January 28, 2011, been all alone for 17 days, the familar Dr. Dan finally comes into the room and I could see he was clearly upset at the way surgery had went, took forever for him to speak the first word, I feared the words, occasionally he would turn away.

I don't know why these events happened the way they did, God didn't promise me anywhere that I would have health and wealth but he tells us that while we are in this world we will have trials but do not fear for I have overcame this world, that is my promise and security.  I just know through these times in our life, sometimes the plan is revealed, some time it's years later, some I don't have the answer and I have learned it's up for me to trust God, not know his plans, purpose for everything that he brings but to trust him and have the promise this world is not my home.

We had a great annual 4th of July celebration at my sister's, after church, the day was food, playing in the pool, a few water volleyball games, eating more, and the fireworks. 

J crawled all over the place, we had so much fun playing in the pool and sitting in the hot-tub
"In every thing by prayer and supplication with thanksgiving let your request be made known unto God." Philippians 4:6]
J hid the key to my treadmill, and laughed as I looked for it. 
J passed out, he was so tired...

Friday, July 1, 2011

Not only can I, but I will.....

I am not a person who has a high level of anxiety, anxiety attacks or let stress get to me, but that is only through Philippians 4:13, “I can do all things through Christ which strengthened me.” I have to admit the stress in my life has been HIGH these past few months but last month I felt like a duck, paddling like crazy to keep from going under while trying to maintain it on the outside. There was lot of things that hit at once. We are enjoying our summer break and we both desperately need the break. Jeremy is getting extra rest he needs and having fun. I have been able to relax, enjoy the fact that I am getting to just be Jeremy’s mom. I finally had help with Jeremy, feel comfortable leaving him knowing his medical needs would be met and even allowed my OCD/control freak self to let go of some control.

We were scheduled for our 2 month review on June 6 with the Oklahoma Health Care Authority to determine if J would continue to qualify for nursing. I will be honest when I say, I hadn’t given it a second thought and wasn’t worried because things haven’t changed but was left with the perception that Jeremy may not qualify. This forced me back into fight or flight mode. We finally heard yesterday that Jeremy does in fact qualify from July 1, 2011 to December 31, 2011, for 12 hrs a day/7 days a week and that we won’t have to do another review for 6 months. Thank you GOD.

The next week Jeremy was diagnosed with his 5th UTI, why and we have to figure this out. I don’t think it’s the sterile technique we are using but there is always room for human error. I do research in Jeremy’s conditions, always have, always will, will continue and not apologize. I am his biggest advocate and making medical decisions for my son. I got with our catheter salesman and we tried many different closed systems and decided on the MTG EZ-advancer. We got them yesterday and I love how easy they are to use, they come in a neat little kit all together and I think this is going to be as sterile as we can get and comfortable for Jeremy. I started talking to 3 of my families who have to catheterize their child but their children are not having to be treated for UTI and the common denominator was, they irrigate the bladder with normal saline on a regular basis. I quizzed Dr. Confer, J’s urologist and made several suggestions toward the care of Jeremy with each one being shot down, with no we don’t do that, no we don’t need to do that. I felt defeated, like nothing I said mattered, so we aren’t seeing him anymore and will start seeing Dr. Oran Miller who does in fact recommend irrigating his bladder.

It was time for us to see our Neurologist, I think J’s seizure activity as increased. There was 1 night that Jeremy’s head and upper limbs were shaking in bed, it didn’t last long, he was fine after but the next day he was exhausted. Jeremy re-building muscles and has went from low muscle tone to extreme tight. He is so tight that he is rotating his one knee inward, that is not good for his development and it’s preventing him from being able to move. Dr. Cyrus increased his bacoflen to twice a day, once in the morning and once at night. We went back to Dr. Steve Miller the first Neurologist in Jeremy’s life today had a good visit and forget how hard it is to go over Jeremy’s history. I always liked him, found him easy to talk to. He is going to do an EEG and we are going to do Botox injections, if Jeremy continues to be tight we may need to do surgery to release the tendons.

I got to go out and eat with a friend who I’ve not seen in 2 plus years. We have so much in common, her 4 year old son is the only other boy that has the probable “FG syndrome” in Oklahoma. It was like me going back 8 years when Jeremy was 4. It was neat to see him because the last time I seen him he was in the hospital battling shunt issues but Saturday he was a happy, healthy, active and ornery little boy. I was able to tell mom he will probably outgrow that because Jeremy did. We had a good lunch, good visit and I got hugs and kisses from a sweet little boy. We decided that we need to get the boys together sometime and let them interact with each other.

I am making plans for our return visit to see Dr. Dan for a 3 month check. I can’t wait to see his face and think he’s going to be pleased. I’m going to make this a 3 day trip to have some fun and relaxation. Motels with indoor/pool-hot-tub is just the ticket, some shopping in Osage Beach at the GAP outlet and baby we are sit. We are going to visit the Orion Space Museum in Camdenton, I goggled it last year but we never did make it there and I think Jeremy will have fun there. I will probably take Jeremy to Miner Mike’s, we had fun there last year and Jeremy really liked the indoor roller coaster and I get to ride with him. We will get to see Dr. Dan, Holly, go to the hospital to see all his girlfriends who just LOVE Jeremy and I can’t wait for them to see him and him see them.

Jeremy has been initiating standing on his own all week, you sit him down and he stands up because this is typical Jeremy behavior, I can stand now so I’m going to keep doing it. It has been neat to watch him this week. He was using his upper body and tried with all his might in Dr. Cyrus office on Wednesday to take a step but he just couldn’t get his legs to move, well today that has all changed, in Miller’s office with me holding just his hands he took a few steps, he was able to maneuver his legs. When we got home Misty the HTS he did the same thing with her, she said he was all over the gait trainer this morning and liked it. He is getting there.

“Whatsoever is born of God overcometh the world: and this is the victory that overcometh the world, even our faith.” 1 John 5:4

J signed his paper, "J"

You can sit me down, but I'm going to stand, because I can....

J with his guitar

J on his trampoline

J with his favorite thing