The Lord is my rock & fortress, in whom I will trust... Psalm 18:2

I was asked recently, did your life turn out like you had planned.  I can say with all confidence and praise to God, no it turned out better because it was God’s plan, Jer 29:11, and trusting in grace alone, through faith alone,  through Christ alone and Grace extended.  Is my life going great, NO, but I can once again say with all confidence and Praise to God, it is well with my soul.....

Jeremy has managed to stay healthy, his last urinary tract infection was in June and he has fought off a couple of illness.   We went to see Dr. Dan in June, and he wants to continue to watch and allow him to progress and I’m in total agreement.  The time we fix J’s spine will be when I say it's time.  I hate that I will have to make that decision for Jeremy and it will be a tough one.  I know the risk, the surgery could take Jeremy's life, more than likely leave him totally not mobile with very little chance to regain lost motor skills and that will be the hardest thing for Jeremy.  Jeremy isn't where he was before surgery and he's not where he was at after surgery but he can access his environment and that makes Jeremy happy.  I have decided to continue on with what we are doing, he's doing well with the nose cannula oxygen he is on, it was a tough transition but we’ve adjusted and he’s doing well.  It will be a decision of quality/quantity of life decision.

Jeremy is up to 65 pounds, and grew 2 inches this past year.  He started having some occasional episodes where his heart rate drops below 50 when he goes into a deep sleep.  He also throws in an extra heart-beat and diagnosed with Premature Atrial Contracture.  The sleep study results showed that he does over all good at night, his movements they feel are neurological.  When we see Dr. Miller we will discuss that issue.       

Jeremy started the 9th grade and loves it, he got a new teacher and classmates.  He turned 15 on August 9, we celebrated with a party at the bowling alley, for family and some of Jeremy’s friends.  He has developed this really, funny, belly laugh, which he will just laugh at everything.  He cracks everyone up. 

It’s been a great fall so far, nice temperatures, we are just living life in Jeremy World.   This weekend it is time to drag out and decorate for fall, our pumpkins, scarecrows, Halloween.  Mulley, the comical cat is doing great. 

It is a comical life, either laugh or cry but seek the Lord

Oh believe me between my crazy son and his funny antics or the Mulley cat who found us, it is a comical life and you either laugh or cry, sometimes do both, but always, “Seek the Lord and his strength, seek his face continually.”  1 Chronicles 16:11.  I have often said, I'm going to write a book, someday and of course I want it to be all for the glory of GOD and I think I found my title that fits us and I like...

It is like the end of January the “change” button for our life was hit.  My job at OGE, changed, I gained another district, but GOD blessed me with even more amazing co-workers, my job became quite crazy there for a while as our company totally implemented a new way that we do business.  I gained a new boss, new leaders in our district and all I can say is Thank you GOD for them blessings I received.  The same time Oklahoma Health Care Authority decided Jeremy no longer qualified for private duty nursing, although many times my comments to them were, “really”, “seriously”.  We filed an appeal on March 25, and just found out yesterday that our nursing stays intact.  Then in the meantime, my son decided that he was going to have some sort of episode that just totally whacked him out, 45 minutes to regain mobility, still regression from that episode, he was so sick one weekend with some unknown illness, he ran 103 temp and didn’t move off the bed from Friday, through Sunday, he really had me scared.  Then if that wasn’t enough, he decided he wouldn’t keep his oxygen level up and went on nasal cannula oxygen.  

Jeremy cracks me up when he is telling on Mulley, It’s ok she is just looking out the window, “Alwrighty thn”.  He says the funniest things at just the right time.  The other day coming home from my mom’s house, he had so much fun, we pass Church’s chicken, which we eat there more than we should, he says, “wnt to go” turn around he’s pointing at church’s.  My favorite will always be, “OK MUMA”     

Joy in our Journey.....

We have had some amazing spring weather and we are loving it.    

I was able to attend the Extraordinary women’s conference in Tulsa, the title was, “Joy in our Journey” I needed that then and I need it now. 

Jeremy continued along the path of indications of an UTI, we did chest X-ray, more blood work and nothing was showing up.  We went for our appeal with OHCA on March 25, I was able to prove some points but I still haven’t heard if they are going to file an appeal, it’s been a long, frustrating process and one that I get no communication from OHCA. 

Jeremy started to have periods where the bottom of his finger nails would turn, blue, purple.  We took pictures and sent to Cyrus, he ordered a pulse ox and said when that happens to check his levels.  We would do that and it was 90ish.  Jeremy started his normal weekly run a fever, sick so we went to see Cyrus in the office, and while we were there he hooked him up to a pulse ox and watched it go from 92, 89, lowest it got was 80 and back up, and down.  He put him on nasal cannula.  We seen our cardiologist and his heart is working as good as the day it was repaired.  His EEG showed that he has seizure activity but it’s comparable to the last EEG we did in 2011.  We now have an appointment with the pulmonologist on April 30 in hopes that will provide us answers as to why this happened, or what is happening with J-man.  He does wear his oxygen, pretty good but has moments he doesn’t want it on and you have to fight with him.  He stayed home 2 weeks while we got adjusted to needing the oxygen.  He returned to school last Tuesday and is doing good.  He is sleeping better with the oxygen, so that is a plus. 
Jeremy continues to say his words, bye momma, I want to help, I want that, he is a funny boy and cracks me up...

Today, April 22 is our 20^th day since the appeal, I’ve contacted OHCA and still don’t know if they are going to appeal the judge’s decision.  I’ve let them know about Jeremy’s recent health changes, so even if they do appeal he now qualifies all on his own with his recent health changes.    

What’s up with that…

Jeremy’s favorite phrase of words have become my life, think I’m officially name my life a roller coaster while hanging upside down.  We had our yearly review for nursing, nothing exciting or so I thought it was just his yearly review, nothing has changed for him but our new caseworker wants to cut Jeremy’s nursing, from 12 hours 7 days a week to 8 hours 5 days a week for 60 days and then nothing.  The caseworker called me on January 30 to tell me this, I was waiting for my car to get finished and I argued with her, pleaded with her, cried for her and finally a no-brainer filed an appeal.  I think she just overlooked so much into Jeremy’s care.  I am waiting on our court date and gathering my data. 

Then the very next day, Jeremy crashed and he crashed hard.  I had went to my uncle’s funeral and on the way home received a phone call from my home nurse that Jeremy was vomiting, running fever, chilling.  We did a urinary culture to check the obvious, Cyrus started an antibiotic that Friday but Jeremy was so sick through the weekend, he finally got off the bed on Sunday.  The week before he had a seizure in the bathtub, and the nurse had to lift him out and it took him over 45 minutes to regain his mobility.  Jeremy stayed home most that week because he was so tired, and he was really starting to scare me.  We went to see Cyrus the next Friday, he did some blood work, urine culture all came back good except Jeremy’s thyroid was 4 times lower than what it should be so that would attribute to him being so tired.  He got better and then by Sunday he was back to running a fever, vomiting, a repeat of the week before but Cyrus felt that was viral.  We did a Kidney US and it showed his left kidney is obviously smaller than the right, so.  We know with FG syndrome they can have kidney issues, but Jeremy hasn't, but we just started checking his kidney’s due to bladder issues, so it could be that his left is genetically smaller than the right, the spine curves in that direction could be preventing growth.  Jeremy’s thyroid came down very easily, his urine culture continues to look good and he’s improving with energy.  We will be doing a Uro-dynamics study to check bladder and go from there.  We had an appointment with our Neurologist and he agrees that some of the issues we saw were along the line of seizure activity so we will repeat the EEG.  This was all in the month of February.  

We have had cold winter, more snow, but it's not been too bad.  We are expecting another round of cold, winter precipitation Sunday, Monday and Tuesday.....

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 7^th 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....

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

"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