Saturday, December 31, 2016

Who's the guide of your journey !!!!!!

Who guides your journey? 

Our year in re-cap and end of year thoughts and I’m going to start this blog off with what it is, this was absolutely one of the craziest, full of change years we’ve had, but I can also say with absolute certainty to GOD be the glory.  His mercies are new every morning, he sustained us, gave me strength because without it I would not have survived this year.  We are stronger and my relationship with GOD means more to me than ever.    

We started January with the news that our Pediatrician, Dr. Scott Cyrus, who has been our PCP for since birth was moving to New Mexico and that rocked my world.  I then found out my boss was moving back to OKC and I would be getting a new boss.  Jeremy then started having something going on, he was having headaches, rubbing his eyes not sure but something was causing him pain.  We already had a follow up with Neurosurgery from the December shunt revision, CT scan and shunt series X-ray showed the shunt was working.  Pulmonary repeated the echo-cardiogram and his pulmonary hypertension was holding steadfast with last year.  A typical Wednesday day for us, Jeremy goes to school, I go to work come out of a meeting with over 15 missed calls & texts to find out that Jeremy had fell back and gashed his head open, luckily Cyrus was in the office that day, so he cleaned his head and put in staples, it was a pretty big gash.  Then Jeremy started to get one UTI after another, he would finish a round of antibiotics and 3-4 days later symptoms would arise, we started doing a Gentamicin flush each night and he’s been UTI free.  His eyes checked out good, his ears checked out good, teeth checked out good.  I had applied and was awarded the grant to attend the American College of Medical Genetics Conference as an advocate and it would be in Tampa Bay.  I was so excited that I was chose to go from Oklahoma with another advocate but there was a questions of if I would get to attend up until the Friday before I left because something was going on with Jeremy.  We ended up in doctor office that Monday with strep throat, so he was on another antibiotic.  I did get to go, met wonderful new advocates, information was overwhelming but motivating.  I even got to visit with a retired OGE friend who moved to Jacksonville, FL.  I was reconnected with Jeremy’s past Geneticist, Dr. Moggandam.  We survived spring, had some house issues, plenty of repairs were made.  Jeremy was starting to level out with his health.  My home health nursing agency was not filling all of Jeremy’s shifts so that made life crazy for us, when our primary nurse was gone on vacation for 2 weeks.  Jeremy attended Camp Barnabas, had a GREAT time.  I got a new boss at work, as well as a few other job changes.  My Agency got us another nurse and our shifts were filled.  We went to Columbia, Missouri for a few days to see Dr. Dan and a few day mini-vacation.  We were rocking summer and moving into fall.   I got an opportunity to go to Omaha, NE for a weekend for some awesome, mentoring training, and then attend the Heartland Collaborative Conference in Little Rock for 3 days.  I will say, this was a tease of calm, a calm before the storm.  I found out that my home health agency was closing Tulsa office and we could transfer to OKC, so I decided to transfer only to have the rug pulled out from underneath me as they said, “OH sorry we aren’t taking Jeremy”.  We had one of nurses during this time to retire, which we were sad because we’ve had her for over 4 years and she filled a day for us and then filled in other times, but we understood she needed to care for her dad.  I started to use my advocacy skills and let my voice be heard about how wrong this was, how hurtful this was to the clients, the children, my son.  A new agency was picked and we were settling in, with our faithful, beloved nurse who followed us.  We had been with them a week, adjusting to new people when Jeremy’s knee swelled up.  A trip to the ER visit which included a knee Ultrasound, blood work, 1 dose of IV antibiotics and we were sent home on oral antibiotics.  I just assumed this was the end of that, we would do the antibiotics, I mean he’s had cellulitis before but a follow up with our doctor office the next day lead to an admission by Dr. Phung (who is in our doctor’s office and is AMAZING).  We stayed for 2 days and he responded so well to the IV antibiotics so we got to come home the day before Thanksgiving.  The next week he finished his antibiotics and his knee was starting to look bad, I had this feeling it was going to come back with a vengeance.  A doctor appointment with Dr. Phung, blood test, Ultrasound we were re-admitted for 7 days, that time included knee surgery to clean out that knee and get rid of the infection, strong IV antibiotics.  A time I didn’t realize I could be so physically exhausted but it was only by the grace of GOD.  We came home and had follow up blood test, doctor appointments,  more blood test until Jeremy’s C-reactive protein level came down to normal.  There was a time that I was sure that we weren’t quit out of the woods and would be readmitted for possible draining the knee or surgery.  I’m honest when I say, I’m still not sure that won’t be in our future, his knee is still puffy, it looks better but still puffy.

Although it was a whirlwind year, we were blessed with help from our friends, church, family who stood by our side and pitched in to help when I needed.  Dr. Phung is our newest Super-hero and how he put into place a quick plan for Jeremy.  I continue my work with Oklahoma Family Network, my mission & my passion, plug along at OG&E with new boss, co-worker in Sapulpa & Muskogee.  Jeremy is loving school and ready to return next week.  Mollie the “crazy” cat, is still the crazy cat who entertains us. 

We will bring in the Year 2017, pretty much like any other year in bed asleep. 

I close this post with my new Motto and somehow I need to figure out the way to get a book started on this journey.  I just trust GOD for the doors to open if that is his will but until then I continue to blog. 

“I don’t trust the Journey, but I trust my GOD who determines the journey”!!!!!!!!   

Sunday, November 27, 2016

My plans = Train Wreck

The Definition of plan is, “scheme or method of acting, doing, proceeding, making, developed in advance” there is nothing wrong with making plans.  GOD seems to be trying to teach me when my plans fail and they do, that they are nothing more than my plans, they aren’t his plans.  I’m guessing that I’m not getting the point.  It is also embedded in my soul to be organized, my soul is happy with I have things organized, and that definition is “functioning in an orderly way or according to a plan”.   Oops it all goes back to that word, “PLAN”.  Don’t get me wrong, there is nothing wrong with making plans or being organized, it helps me along the way to make sure I achieve what needs to be but when my plans fail and it my biggest frustration at that point it is wrong and it shows that I’m not trusting GOD that he is capable of dealing with my life, as if he needs my help.  God knows what plans he has for my life and what plans he has for Jeremy’s life.  
Jeremy started out a sick baby caught everything, from the age of 3 to 10 he just got normal & occasional childhood illness and I would say with what he started with he was overall healthy.  These past years have been tough because he gets sick easily, and this past year it seems like it’s been a constant theme in our house.  He started a fever on Sunday so we figured he was trying to fight off an UTI or possible his strep, but he was out of school all week.  Sunday night he was very restless, moving his right leg like crazy but he has restless leg syndrome and actually takes medicine for it.  He had PT on Monday and apparently his knee was red & hot to the touch.  I asked about it being infected, but no obvious infection.  I figured probably aggravated by therapy but by the time I got home and looked at his leg it was horrible, red, swollen (felt like a balloon) so off to the ER we went.  The ER did blood work, X-ray and US of the knee.  There was no fluid in the knee.  My plan that night was, I have a nurse until midnight so I am going to get some sleep.  We got home from the ER about 11:30pm, with diagnoses of cellulitis, script for antibiotics and follow up with our doctor the next day.  If that infection was to break loose or keep spreading, it would have spread like wild fire and Jeremy could have been septic.  We weren’t out of the woods yet, and the next day his knee didn’t look any better, not worse so the PA felt like we needed to be admitted.  My plan on Tuesday night was to get home, go to bed since I had a nurse until midnight.  My plan was to have a nurse on Thursday, Friday & Saturday and get to do some shopping & relax on my thanksgiving break but since Maxim’s big ordeal and cutting us loose that wasn’t going to happen.

I have learned through the years (with some input from my Pastor Mike & his wife Karen) that Proverbs is a chapter of wisdom.  In fact Proverbs 1: 2-7, to know “wisdom and instruction: to discern the sayings of understanding; to receive instruction in wise behavior; Righteousness, justice and equity: to give “prudence to the na├»ve, to the youth knowledge and discretion: a wise man will hear and increase in learning and a man of understanding will acquire wise counsel:  to understand a proverb and a figure, the words of the wise and their riddles: The fear of the Lord is the beginning of knowledge, fools despise wisdom and instruction.  Then Proverbs, 3:5, to not lean on my own understanding but to always Trust God.  I need to seek his way, his words, his wisdom and the right path for my life. 

So, how did I get the title for this blog, interesting and it comes from living life in Jeremy World which includes, the crazy Mollie cat.  God knew I needed an extraordinary child, one to keep me humble and focus on what was important.  I started last week with the thought of needing to do a blog post and I know GOD gives me these words & thoughts.  I kept going back to the word plan but wasn’t sure what direction to go with this, my first thought was whirlwind but I have to give credit to Mollie the cat for her train-wreck she created for me on Saturday morning.  Mollie was doing sprints all through the house, thumping & jumping on everything I imagine, jumped on the bed and then my head.   I walk into the living room to see this and think, Yep this is the theme, so train-wreck came from Mollie’s part.  My long term plan is to write children’s books about the adventures of a boy and his cat.   

Enjoy Mollie's visual effects and her contribution to the blog....

Friday, June 10, 2016

When you don't move that mountain !!!!!!

I have been thinking about needing to update the blog, I will work on it, it’s not right, change it, sometimes delete it all together and start over.  I pray about what I post and wait for GOD’s inspiration, sometimes it takes months to get a blog post.  I do this because my long term goal is to write a book. 

Where did I get the title, one of my favorite songs from Lauren Daigle, “I will trust in you”.  It’s also means so much to me as this is a season in my life of GOD teaching me.  When I hear this song I am normally singing it at the top of my lungs, why because I believe with everything in me...

We started the year out in a whirlwind so I will summarize because we did see our entire team of specialist in the first two months of the year:

  Pulmonary  - Jeremy’s pulmonary hypertension a concern, let’s do another echocardiogram to see where we are at, the future is possible sleep study to fit for a bi-pap and some point medicine.  

Cardiology – actually echocardiogram looked good & pulmonary hypertension is holding stable with last year so we will repeat the echocardiogram in a year. 

Neurosurgery – I really thought he was going to end up with another shunt surgery, but shunt series & CT all looked good, ventricles are smaller in size and shunt tubing is in place, we follow up in a year. 

Urology- he was having one UTI after another, he would finish an antibiotic and 3-4 days later he was having symptoms so we increased Gent solution to every night, so far that is working with no antibiotics since March. 

Orthopedic – one of the X-rays mentioned that his hips looked to be out of place but Dr. Dan did several X-rays, and hips were not out of place, always a heart wrenching appointment since his spine is progressing.

ENT- he was able to check out his ear & canals on the previous CT we did in January and his ears were all cleared which was good news because the CT was taken the day Jeremy was in lot of pain.   

Dentist – his teeth looked good none looked to be infected on an X-ray

Pediatricians – Cyrus, Phung & Siswasto (yes we seen them all) Jeremy fell at school gashed his head open, Cyrus put him back together with staples in his head, Siswasto removed them.  Phung ordered test on a Sunday because the night before Jeremy kept having desaturations and we found Jeremy to have a high white blood count, RSV, (RSV? He never even got as a small child).   

Neurologist – actually we are doing well in this department.   

 I was fortunate and got to attend the American College of Medical Genetics conference in Tampa, Florida, being part of the National Center of Collaborative and represent our Heartland Genetics as an advocate with another lady from Tulsa area.  We flew out of Tulsa on March 8 and came back on March 12.  I had a great time, met many new advocates, made new connections.  I got to meet up with a friend who retired from OG&E, we had dinner one evening, took a dolphin tour.    I left there with a renewal that we need to get back to find  a diagnose for Jeremy. 

Jeremy completed 10th grade on May 12, he’s had a slow summer and leaves for Camp Barnabas next week, excited for him to attend again although he keeps telling me no.  Mulley the cat he has aggravated for days, she keeps looking at me like really? 

I started in April trying to get our nursing agency to fill Jeremy’s open shifts and he was soon to get out of school and our primary nurse going on vacation for 3 weeks the end of May.  I was told, due to the “proposed” 25% provider cuts they weren’t hiring any new shifts so if a nurse was looking for hours that is how it would be filled.  I started advocating by writing letters, calling my state elected officials, praying GOD, move those mountains, I can’t do this.  I finally seen I needed to adjust my attitude and settled myself down, went to battle and was going to do it with joy in my heart because GOD was whom I had my trust in.  We were on our 3rd week of reduced nursing shifts.  I was thankful that my one nurse was able to work several reduced shifts to help us out, then our HTS worked as many hours as she could to fill some gaps.  I had friends, family who offered to help.  On top of being exhausted, I’ve been battling rules & regulations, jumping through hoops to get the money moved on Jeremy’s waiver to hire an additional HTS and on Thursday, June 9, an email was the straw that broke the camel’s back.  I sit at my desk at work almost in tears, I started talking to GOD and asked, “how long do I keep fighting?   because I’m tired just give me strength”.   I made my mind up I wasn’t giving up and was marching forward.  That next minute I receive an email from my nursing agency that our nurse is back from vacation and wants to work Friday & Saturday, I had tears well up in my eyes and such awe and  the fact that GOD already seen this day, he was working everything out for his good.  I am his child, he hears every prayer, he sees every tear, he sees every exhausting moment and my GOD is bigger than everything. 

Letting go of every single dream I lay each one down at your feet, every moment of my wondering, Never changes what you see, I try to win this war I confess, my hands are weary, I need your rest Mighty Warrior, king of the fight No matter what I face you're by my side.

When you don't move the mountains I'm needing you to move When you don't part the waters I wish I could walk through, When you don't give the answers as I cry out to you, I will trust, I will trust, I will trust in you.  

Truth is you know what tomorrow brings, There's not a day ahead you have not seen,
So let all things be my life and breath, I want what you want Lord and nothing less. 
When you don't part the waters I wish I could walk through, When you don't give the answers as I cry out to you, I will trust, I will trust, I will trust in you.

You are my strength and comfort, you are my steady hand, you are my firm foundation,
the rock on which I stand, your ways are always higher, your plans are always good, there's not a place where I'll go you've not already stood.