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