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.

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....

  

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

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

To God be the Glory, good-bye 2012 and welcome 2013 !!!!!

We had a few scares last year with Jeremy start out in February with a routine CT scan to see our Neurosurgeon to see that the shunt had shifted forward so possibly dislodged or possible tumor a pretty scary time.  We know the shunt is 10 years old living on borrowed time.  We did an MRI and everything was fine.  In July in an attempt to figure out a way to reduce the number of UTI's we decided that doing a Foley cathear at night to keep his bladder empty.  Then one Saturday, I had made plans to have dinner and see a movie with a friend, came home and we took a good, nice nap.  We got around to install the Foley cathear, nothing new process and Jeremy had pulled on it.  We notice no draining and when we removed it blood started to gush out, so grateful our home nurse was here.  I loaded Jeremy up rushed him to the ER, the nurse stayed and cleaned up the kitchen and I was sure we were to be admitted or he did some major damage but to God be the glory a week of a Foley cathear to reduce the swelling worked, it was removed and we returned to cathing him 5 times a day.  Jeremy started 7th grade, enjoys choir and being around his peers.  He's done very well and only missed about 4 days due to a UTI which has been his only sickness.  He continues to be verbal, funny and ornery. 

I have been blessed to be at OGE for 22 years, I love my job, co-workers and the work that I do.  I continue to do my work for the Oklahoma Family Network for 10 years.  I was excited to get a Hispanic family partner to help us with our families who speak Spanish and excited for this upcoming year.  I have became busy with this, we have been doing Tulsa Sibshops for 5 years which is a huge blessing to families and the children are just amazing. 

We live in a ever changing world, I officially will become a single mom as we filed for divorce and go to court on January 8.  My job at OGE will come this upcoming year with some changes.  I also need to make some changes in the area of not being so hung up on getting things scheduled/planned.  I am OCD in that area.  I have also came to realize that our lives are just different, Jeremy gets tired easier so trying to cram a full day on a vacation is just not going to be possible with him, he doesn't respond well so we are going to have to take things slower. 

I'm grateful for our church Sapulpa bible church, love attending, the worship service is so spirit-filled, the preaching of God's word is the truth.  I have enjoyed picking up 2 little girls and taking them to Awannas and then staying for bible study and taking them home. 

So, good-bye 2012 like any year there were highs and there were lows and hello 2013 !!!!!

Vacation & Christmas...

I was on vacation starting December 21, but it was Jeremy's last day of school.  This allowed us to sleep a little later, take our time getting Jeremy ready for school.  Once he was on the bus, I had my house all to myself and that never happens.  I was excited to take my time getting dressed.  I then was off to run errands go to my chiropractor appointment which I needed, grabbed pizza and spent the evening relaxing with Jeremy.  We then spent the next 12 days pretty  much the same, sleeping in, relaxing and pretty much no agenda.

We had a return trip to Columbia, Missouri to see our Amazing Super-Hero Dr. Dan for a follow-up visit. My nephew James was our traveling companion, we left early on Thursday, December 27.  Our appointment was at 3:50pm.  We arrived in time to visit some of our friends at the Children's Hospital, then went to our visit with Dr. Dan.  We got to visit with Dr. Daniel Robertson who was our first resident, and we love him he's so awesome, compassionate and full of empathy.  Then Dr. Dan came in with the new resident who is married to one of our past resident, Dr. Nelle, who was with us our 17 days in traction.  Jeremy's spine is flexible, he can see the difference in the previous X-ray in brace and this past out of brace.  Dr. Dan was impressed with how well J was getting around, his endurance.  Once again no plans to do anything permanent, which I told Dr. Dan I was fine with that.   We come back in 6 months for a re-check.  I then got to meet Dr. Kuhns, who was the surgeon who assisted Dr. Dan in the surgery, and I wanted Dr. Kuhns to get to see Jeremy to see how well he was doing.  Jeremy walked in the walker up and down the hallways. 

We then went to the Columbia Mall, walked around and did some shopping.  We went back up to the hospital to catch Nurse Michelle, whom we haven't seen since Jeremy was discharged and she was our night nurse out on the floor and really loved Jeremy and we loved her. 

We met up with our friends in Osage Beach for lunch and enjoyed time with them.  We arrived home at 6pm and was ready for home. 

It was a nice 12 day vacation, I enjoyed the relaxation and the no agenda, no rushing around just whatever, whenever.....

Here are some pictures of our trip:

Granny on Christmas

Papa on Christmas

J's spine July and December

J with Dr. Robertson

J with Dr. Dan

J with Maydsen his friend

Me with Zayden (love this kid)

Zayden, J and Maydsen

J at MU Children's helping Steph

J w/ Nurse Michelle (she was our night floor nurse for 17 days

J w/ Herschel (custodian that always played with Jeremy when we were there)

 

It's beginning to look lot like Christmas....

The Oklahoma weather won't necessarily put you in the Christmas Spirit but I love the mild weather and not complaining.

We had such a nice, casual Thanksgiving holiday, dinner with my sister and her family on Thursday.  Friday I got motivated and got most the outside lights out and arranged in how I wanted them, did a little Christmas shopping.  Saturday was sit aside for my families big dinner, with all my brothers and sisters plus we got a pleasant surprise my dad went and got his sister from Chandler, my Aunt Ruth.  There was plenty of good food, and plenty of laughs which is always pretty much a given with my family.  Then Sunday was a perfect day to finish up outside decorations, such a beautiful warm day so I was able to get all of the outside decorations up and make sure they were all lit up, almost a Clark W. Griswold moment.  Jeremy came outside and got to look around.

Here are a few of our decorations: