Tuesday, December 31, 2013

Here's to another Great year....

Here is to the end of another great year!!!!!

I started vacation on Friday, Dec 20, but just like Oklahoma with our wild weather we got hit with an ice storm.  I got called in to work and vacations cancelled.  I ended up working 8 hours on Saturday, 13 hours on Sunday, and a few hours on Monday.  I then started vacation and since I simplified our holidays we were able to just enjoy the time, took lots of naps.    

As I reflect over the past year we had some pretty significant changes in our life.  I don’t think anything could have prepared me for the loss of my earthly dad, the man who always had a presence in my life, I’ve known my entire life was now gone.  My brother called me on Thursday, Jan 10 and dad peacefully took his last breath approximately 3am on Saturday, January 12.  I have to say that during that time I never remember physically having a sense of comfort in my life. 

The other big change, after 5 years of a legal separation is our divorce was final on January 15.  I have primary custody of Jeremy but his dad is allowed to see him when he wishes.    
I continue my job at OG&E, the job continues to be a blessing; it provides a good income, great health insurance.  We went through some significant changes as teams would be formed to determine job duties and titles.  I assumed some of the Shawnee Scheduler duties as part of my daily duties.  When I went on vacation in June, they moved Shawnee to our Metro Oklahoma City and the Scheduler in Muskogee retired.  I am now Muskogee/Sapulpa Scheduler, I absorbed her duties.  I have been busy, learning new area and people.  It has been great, I do love being busy.  I continue to be a Patient Navigator with the Oklahoma Family Network, which has always been my mission and passion to help families who have children with special needs.    
Jeremy continues to remain strong and make steady improvement.  Jeremy did miss the last week of school and I was disappointed because he missed his 7th grade graduation and he was strong enough to use his stroller to walk across the stage.  I think Jeremy not getting to go and then knowing my dad wouldn’t get to see him, was upsetting.  Memorial day, it happened as quick as it could and you’re always told it can.  We had a relaxing morning, cool weather, Jeremy outside playing.  We come into the house; he had a seizure and fell back.  To the ER we go and surgery was scheduled for the next day as his tubing came loose from the shunt.  The good news is we still have the same shunt.  It did take him a little longer to recover, but the rest of the summer was uneventful not even an UTI.  We took a 3 day mini-vacation, went through a drive through safari, and had fun relaxing in the hot tub/pool at the motel.   Jeremy started Jr. High and is doing well, they love him and he’s Mr. Social boy anyway.  I have found he is quit a little cut-up.  It was disappointing to find the scoliosis has progressed and for the first time Dr. Dan could see it getting into the left lung on the X-ray.
We grew as a family, and now have Mollie the cat who is quite honestly has lot of the same traits as Jeremy; they make a great team and life interesting. 

We continue to attend Sapulpa Bible Church and are blessed beyond words to find this fellowship of believers, to worship in song and word with such a great body.  We love them all. 

We say Good-bye to 2013 and we welcome 2014, God in our lives, our trust and faith in him.  

Jeremy and I will be celebrating in our usual way, out at Granny's spend the night and more than likely be in bed by 8pm....

Tuesday, December 17, 2013

Certain things about tomorrow I do not understand, but I know who holds the future and I know he holds my hand....

We went back to see Dr. Dan, on December 10 and I have to say it was nice to just have a 10 hour day verses a 2 day trip, especially with the busy time of the year and a bonus because we can make it in under 12 hours our home health nurse was approved to go with us, so I focus on driving and Jeremy was able to stay on target with all his medical stuff.
We had a good visit with Dr. Dan, he was impressed with Mr. J ability and motor use, he was showing off his walker skills and even reverted to using a chair on rollers to get around the office.  The visit also produced some not so great news, but news that I knew we would one day get because Jeremy’s spine never allowed us to place the rods.  Jeremy’s curve is now starting to get into his left lung area, which goes along with the news we received from our cardiologist this past summer that his heart is showing to be compacted.  Jeremy’s spine is sensitive and just doesn’t do well with surgery.  His blood pressure drops dangerously low and his blood starts shunting to his internal organs to keep them going, so he loses motor activity as well as 3 units of blood.  He then spends 3-4 days with an arterial line on total BP meds just to get his to a normal level, then time being deep suctioned to keep the stuff out of his lungs.  January 28, 2010, was a day of mourning for me, it forever changed our lives.  GOD used that time to grow me in such a painful way, learning is never easy.  Jeremy still can only handle 4 days of school and when he is tired or not feeling good reality is, life slows down for us.  That is how I came up with the title to this post, I don’t always know about tomorrow but the great news is the GOD who knows the future is the same one who holds our hands.

               Here are a few pictures of our Christmas decoration.  I have to say, Mollie has had a blast with the tree, she likes to hide out behind it and when I pick up an ornament she jumps out and attacks you.  
The Battle, Mollie is too close 

Mollie stole the Grinch !!!!!

Thanksgiving day 

The tree when J and Mollie leaves alone

Friday, October 25, 2013

"Thanks be to GOD, which giveth us the victory through our Lord Jesus Christ."

I have been slow on the posting, there have been changes in our lives and we are adapting.

I am grateful and praise GOD over and over for the awesome summer we had, we truly enjoyed it.  Jeremy had great, dependable staff, he only had 1 sickness.  His staff took him on some trips and he did great.  The cat known as Mollie has blended in well with our family and is a drama queen.  Mollie has 2 meows, one, “I’m upset crying” and the other is, “I need attention now”.  I took her in to get her spayed, de-clawed and all her shots at the same time, she did well.  When I took her back to get the stitches removed, she was trying to get out of the carrier and Jeremy was trying to get her out so needless to say Jeremy was mad that I took her and she cried all the way over there and back, really?      
Jeremy has adapted well to Junior High, it’s an all new school, teacher, kids.  He likes everyone and they like him.  They have given him the nickname Edward Scissor hands, why?  Because he has very fast hands and can grab 15 things at once and if you don’t believe it try taking him out of somewhere when he doesn’t want to go.  He is also the only kid in his class whose desk is turned backwards, why? so he can’t get what is in his desk.  I love his sense of humor, so glad he has one.     

One night I formed a long string with fun sticks, Mollie had fun chasing it and Jeremy had fun teasing her.  It was comical to watch them play.  Jeremy is still learning empathy but getting better.  He tends to treat her like a stuffed toy but somehow I have to believe she doesn’t mind because she just lays around when she could escape.  The cat named Mollie doesn’t like to be alone, I figured she would love her carefree days of no one home, but when you walk through the door she is ready for attention.  Jeremy has learned a few of her tricks, he now gets in the back corner of my closet and hides which is fine when Mollie does it but for him this requires him taking all of my shoes out of the closet.

There have been changes at my job, I am learning many new task as well as an entire new area with new people.  I got to spend a week in Ft. Smith learning the new process which was neat to see how it will be when we starting doing it the end of January. I did get a week break from being mom and nurse, although I missed Jeremy it was a nice break.  I got to meet up with a friend who I’ve worked with for many years, we had dinner and then decided to go to a movie, it was so much fun.  I have a new boss and many new co-workers but it’s all been a good transition.    

GOD is once again molding me.  I truly love our Sapulpa Bible Church, I really love our worship time, the songs are so uplifting and you can truly sense God’s spirit.  I love that Pastor Mike preaches what the bible says, he doesn’t do the good fell kind of sermon and I’ve been challenged.  I love our church people, how they are all there for one common goal, that is to use their gifts for what God called them to do, and to LOVE each other, and serve God. 

               We are enjoying the season of fall, we are having some cool mornings, days, rain and it’s just been glorious.  Here are a few pictures…..

On a mission... Playground

Granny, Mollie and Jeremy

J- I have a cat I know how to play

The boy and cat- nap time

Our decorations

Ohhhh, scary

Our fun yard

Zoo trip- J petting the goats
1st day of Jr. High 

Wednesday, July 10, 2013

The day of Summer and new family Member

We have just been living life and enjoy summer, I have really enjoyed summer because the evenings after work I don’t have much to do and not rushing around to get things in place for the next morning.    

I took off the entire week of June 17-21 and enjoyed it.  We left June 19 for vacation/doctor appointment.  We drove to Springfield, ate lunch then to the Wild Animal Safari about 8 miles outside of Springfield.  I was impressed with all the animals that would come up to your vehicle window, Jeremy got to pet a camel’s nose.  Jeremy thought it was funny when I would roll down my aunt Betty or mom window when the animal came up, because they would jump back and scream and try to get their window up.  The animals would just circle your vehicle.  When we first entered this ugly thing, marked the car came up to my side looked right at me and licked my window, slobber and all.  Jeremy also got to pet a giraffe.  They had a baby monkey inside that anytime Jeremy got close to the cage he was checking him out like he was a threat and wanted his toys, it was funny to watch.  We then went to check into our motel, take care of Jeremy’s medical needs, rested and then went to Lambert’s the place of the throwing roll and boy was that a GREAT place to eat.  Jeremy laughed when the rolls were thrown, my aunt did a great job of catching all of ours, but dropped a few.  We enjoyed real homemade rolls, fried okra, then with your meal they would bring around real fried potatoes with onions, macaroni and tomatoes.  Jeremy and I split a meal which was a good thing because not much of that got ate and sad to say got wasted.  We enjoyed the hot tub/pool at the motel and crashed into bed.  These are places I want to definitely visit again.  The next morning it was nice to take our time, enjoy breakfast and have a nice leisure trip to Columbia.  We got there early enough to eat at McDonald’s for Jeremy to play, go check into our motel and then start our reason for the trip.  We went up to the hospital to visit Jeremy’s friends, he started clapping and screaming with excitement when we pulled up, he cracked me up.  He wanted to go straight to the playroom, Shelly took him, then Corrine came to see him, Amber, social worker and Lauren, then he got to see Elizabeth.  We were sad to hear that Lauren will be leaving in August, she always made it a point to come by and play with Jeremy each day and he loved that, he loved to play ball with her.  We were excited to get to see our favorite resident Dr. Robertson, this last year he will be in rotation with Dr. Dan.  Dr. Dan was impressed with Jeremy, his progress, nothing has changed so we just keep on trucking along. 

We have a new family member who adopted us.  This cat has been hanging around our house for weeks, I totally ignored it but one night accidentally trapped it under our house and it still stayed around, it was calm, would come up and rub against you.  Friday morning it showed back up, so I gave it a flea bath, food, water and liter box and it went right to all.  It is a very spoiled cat, but behaved cat.  It has been funny to watch Jeremy as he adapts to it.  

Here are some pictures of Jeremy's summer fun... 

Day at the Library 

This licked my window
Wal-mart in Columbia 
Lazy tiger day
The camel came running 

Baby Monkey

Day at the park 

Zoo day 

Riding the train at zoo

He loved riding the camel  at the zoo 

Day at Aquarium 

We have decided to name her Mollie

Thursday, June 6, 2013

Lord you never let go of me....

                I can’t believe I hadn’t posted since March, where has the time gone.
                Jeremy finished Middle school, graduated to 8th grade, so in August he turns 14 and starts Junior High.   
                I have went by the school, met with his new teacher and Para-professionals, they are all super nice and sweet.  He is going to love next year and I’m excited for him. 
                Jeremy caught a viral upper-respiratory infection and not only missed the last 3 days of school but also missed his 7th grade promotion ceremony.  I admit I was so disappointed.  I was looking forward to him walking across that stage with his walker in his new big boy clothes, he spent the week after in recovery mode.  Then, if that wasn’t enough Memorial day he had a seizure that caused him to fall backwards, trip to the ER, surgery the next day to replace the shunt tubing that somehow came loose.  I admit again that I was disappointed because since it was a weekend holiday, our Neurosurgeon who we love dearly and seen for 11 plus years was not on call and out of town, so we got a NSG that I’m not fond of.  There was concern when we first got home because there was a pretty significant gross motor regression but J is almost back to baseline.  We seen our cardiologist yesterday for a follow-up, Jeremy’s heart is doing good for him, it has shifted but due to what he has going on in the thoracic area that is not surprising.                 

                Jeremy teaches me all the time, how quickly our lives can change, not to focus on things of this world because it’s all about GOD and what shall I fear.  I sometimes live in fear of losing Jeremy, it’s the reality of a child with special needs.  I love Jeremy beyond words and it hurts me to see him hurt.  I can’t even begin to imagine the entirety of the thought that God loves me even more than I love Jeremy.   When Jeremy is laying there asleep and I watch that precious little face it makes me forget that he almost burned up the microwave or cleaned out my spice cabinet by dumping them all on the floor.   I think just perhaps it helps me to possibly start to imagine GOD, watching his perfect son in agonizing pain for sinful human race but that he loved us so much he allowed it.  Oh amazing grace and whom then shall I fear. 

I am listening to this song as I came up with my closing....

Tuesday, March 26, 2013

Renewing of your soul....

I have decided we might need an intervention for Jeremy, yes it's true.  Jeremy has became a trash diver and I'm not kidding.  His HTS brought over some Arby's and gave him some fries, he ate most of them but when we got ready for bed they had sit out so I threw them in the trash.  The next morning we come into the kitchen, he dug the arby's sack out of the trash.  The other morning getting ready for church, I threw a couple of old makeup containers away and when I turned around he was rushing to the trash to get them out.  He continues to become more verbal, but I'm not sure what the trash thing is about but he does provide me with entertainment.   He was in his closet the other day and discovered I still had all his baby blankets, and that he must look at them, then the decision was made that his little fellas needed the blankets.  I was able to negotiate putting back the ones that were hand crocheted for him.

We have been enjoying our spring, although we had some cold weather and snow flakes on Sunday it was such a glorious day.  My flowers are starting to bloom and the grass is starting to get green and grow.  "Be ye transformed by the renewing of your mind, that ye may prove what is that good, and acceptable, and perfect, will of God."  Romans 12:2.  We have been doing some renewal of our souls, personally, spiritually and emotionally.  I purchased me the John McArthur study bible so I can really start studying the word of God not just read it, but study.

I have been on the Zeal wellness since September, it's 120 vitamins and minerals that I otherwise would not get, I feel great, energy, eating healthy and exercising.  I put Jeremy on it a few weeks ago because he otherwise wouldn't get this in his system, he already eats pretty healthy but as you know he deals with urinary tract infections.  It has just been a demon that we have fought and he's been off and on antibiotics for the past 2 years and I hate that.  I have researched, tried everything I can think of but nothing has slowed them down.  I put a 1/2 scoop of  the Zeal wellness in his applesauce in the morning with his vitamin.  He did the week before ran a fever and had chills but broke that with 1 dose of Tylenol and it hasn't returned.  He's had cloudy urine a few times but it cleared up.  Jeremy has been sleeping so amazing well which is good for the renewal of his body.  He started last week decided that he would stand up by the couch and stand there as long as he could.

Last night as we got ready to go to bed, this is what HAD to be on the bed with him.  It cracked me up, I did negotiate that the tub of babies was NOT going onto bed.

Friday, March 15, 2013

Spring is approaching....

I always love the time of year that we spring forward with time, so I was super excited that last Saturday, we sprang forward so we are having daylight longer.  Our Oklahoma weather has been awesome, it's warming up and spring is in the air, which technically, Wednesday, March 20 is the 1st day.....

My mom and I took a trip to Columbia, Missouri last weekend, it was nice to get away and fun to have a trip with just mom and I.  I wanted to go to support Pascale's Pals, they are the organization when Jeremy was in the University of Missouri Children's Hospital, brought him a basket with a colored Nook that we used so much when he was in the hospital, she also sends Jeremy a Christmas gift.  I like to give back to what was given to us, plus it helps support and make sure their efforts continue for other children.

Jeremy is on spring break next week, so excited for his break.

I had a resource fair last night out of town so when I got home, Jeremy was a lump on the couch fast asleep.  He continues to talk up a storm, you can start to understand more and more of what he is saying plus he continues to build them leg muscles.  The nurse took him out yesterday evening and she told me that he used the ramp at the church from our house and walked all the way up and back down then said, "you did it".  She ordered pizza for them and said he ate 3 1/2 pieces and told her "thank you".  I've not heard that word yet.  I continue to hear, "I wan tat", "I sed tat", "wha up wi tat".  His voice is so adorable....

Wednesday evening we were sitting outside and I caught this picture of the monkey as he pulled up to stand....


Friday, March 1, 2013

Winter days in the Life of J....

We have had some snow lately, or actually the Weather channel used the term, "Thunder snow".  We get heavy snow, then rain, then either hail or sleet, then lightning and thunder then its cold for a few days.  The snow doesn't stick around, but that has been our pattern for the last two weeks.  

We went to see Dr. Marouk, Neurosurgeon for our yearly follow-up and to get the results of our MRI we did on February 14.  I had wondered with an episode a few months back if his shunt wasn't working correctly and sure enough the MRI showed Jeremy's ventricles were a tad larger than last year MRI, but not enough to rush off for surgery.  Jeremy is still progressing physically, emotionally and cognitively.  We will be watching J, see Dr. Marouk in 6 months with a CT scan.

This past weekend, there was a time J got really agitated with me, rubbing his eyes really hard like he got something in there, but wouldn't let us look in his eyes, pointing to his head saying, "fix it".  I was ready to call Marouk.  He was showing signs of getting a UTI earlier in the week so I took a sample in on Friday.  Jeremy cratered fast.  Our Super-Awesome Pediatrician, Dr. Cyrus always comes through for Jeremy, got the results called in an antibiotic and he started them Sunday.  Jeremy did stay home for 3 days but was improving daily.  The good news is the UTI are getting farther apart, which is what we want to the point they don't exist.

Jeremy got another round of botox injections on Wednesday in both legs.  I'm gearing up for another round of great improvements in him.  I told him to tell Dr. Miller and Heather by, he just folds up his little arms puts them in his lap, sticks out his tongue and is silent.

He is getting brave, sometimes he looks at me like just darn me to let go, I tell him, "go right ahead".  He does this side kick that is hard not to laugh at because it's so cute, he will be standing there, stick out his tongue and start kicking his leg sideways or backwards.  He continues to be verbal and responding to commands, "help me dress you" he will put up his legs, or hold out his arms.  This is a boy who knows what he wants.  His nurse brought him a hamburger one night, he finally ate the meat so I wadded up the bun in the package and thew it away, the next morning after my shower I come into the kitchen to find him sitting at the table with that wadded up hamburger bun on the table.  I negotiated that for some corn tortillas.  Then this morning he knew the nurse had her chips on top of the ice-box so I come to the kitchen and he's trying to get something off the ice box, which I knew what it was I told him the chips on on the table.   He insisted they go to school with him.

Here are a few pictures of the ornery little boy.
He wrote on his face with a dry erase marker

He insisted he wear his glasses to bed (he was asleep)

He got in one of his tickle me Jeremy modes

Wednesday, January 30, 2013

Our God whom we serve is able to deliver us.- Daniel 3:17.

                I had first thought Jeremy and I would stay home New Year’s eve, he does better at home and it’s easier for me.  I decided at the last minute to go spend the night at my parents.  It still makes me feel like a little girl staying there, my sister and I who shared a room when we lived at home even shared a bed that night.  I wasn't expecting to experience such heart-wrenching grief so early in the year but I did and all I can say is my hope is in GOD. 
                My dad had cancer but was doing well, he was sick over Christmas but was still getting around for the most part.  My brother called me just as I was getting ready to go visit families at the hospital and told me dad had fell so I felt like I needed to go see dad.  I’m glad I did, he was doing pretty good, we all visited, prayed for dad, he even prayed.  I kissed dad and told him I loved him and left about midnight.  I was grateful to know that my dad in his last days gained the knowledge and accepted Jesus Christ and was trusting him for his life.  I went back out there the next day and as I turned the corner from Heyburn dam I was just slapped in the face with the beautiful vision.  The sun was popping out of the cloudy sky with rays shining down.  I pulled over to take a few pictures, prayed and thanked GOD for just being who he is, so mighty and powerful, loving us for who we are.  I prayed for dad, cried and knew in my heart they were coming to get dad.  I couldn't believe the difference in dad when I got there, he was much worse.  Then later that evening my sister, niece and I was sitting out on the porch and there just came up a nice, peaceful, cool, breeze, the leaves were rustling and I told my sister that there are angels around us.  We spent the day, holding dad’s hand, telling him we loved him, talking to him.  I left after midnight to go home, I was so emotionally exhausted.  I received the phone call on January 12 at 4:25 a.m. that dad just peacefully took his last breath.  I was heart-broken but the reality had not set in and it didn't hit me until on the way out there I passed the Sheriff’s car and had to pull over and realized dad was gone.  It was hard to walk into the house and not see dad.  My parents moved into this house when I started 1st grade, its the home I remember.  When we got home about 10 that night we just fell into bed, we were both so exhausted.  It was hard to get up to cath Jeremy at 1:30 a.m.  I finally got him back to bed and noticed him laying there, very still, peacefully staring up at the ceiling, then turning his head to the left like he saw or heard something.  I laid there, the house was very quiet.  Jeremy then turned his head like he was tracking someone walking from the door to my side of the bed and he fell asleep.  I then felt something brush my shirt, it startled me and I turned around.  I then fell asleep and slept like a log.  I truly believe that was God’s sending comfort to me.  I have felt peaceful but still can’t believe dad is gone.  I am grateful for the dad he was, he was a great dad.  I’m grateful for my mom and siblings and I’m so proud of who we all came together as a family.     
“Thanks be to GOD, which giveth us the victory through our Lord Jesus Christ.”  1 Corinthians 15:57
When I took the pic I didn't notice the clouds

Exact same location take on Sunday, Jan 13

Jeremy with his Papa (my dad) 5th grade graduation