Friday, June 29, 2018

I trust GOD, not the Journey !!!!!!!

There have been many times in Jeremy’s life that have hurt me to the core to the point that I felt like the breath was knocked out of me and all I could say was I can’t do this, GOD fix it.  When Jeremy was born with multiple medical needs and required brain surgery the 2nd day of his life, the 11 day NICU stay, test after test, diagnose after diagnose.  I viewed this as unfair because I DIDN’T deserve it (believe me I cringe at this statement) I deserved a child that was perfectly healthy, I deserved better, he deserved better.  I grew up with the thought process that everything happens for a reason, so what did I do?  What is the reason?  Why did it happen?  Because so many times in our Christian life what do we do?  We hand out pieces of advice based on a partial piece of a scripture that we can take and fit it into our little box we call life because it makes us feel good.  We don’t read the before and after scripture or even study the context.  I’m guilty of doing this more times than I can even remember, and I’ve had to repent of that.  What does Ecclesiastes Chapter 3 tell us, basically there is a time for everything, so there must be a time for healing, because everything happens for a reason because Romans 8:28 tells us what?  What else do we often do as Christians, we make everything about us, my hurt, my healing, my heart, my suffering.  Jeremy didn’t deserve to require spinal surgery that would rock his entire core system, take away his mobility the one thing he dearly loved and long-term affect his health.  I cried out to God to many times, heal him, let him walk again, this isn’t fair and we don’t deserve it.  Then that day, that moment (there has been many) that GOD would speak to my heart as if to say, “Lora, Jeremy is fine he doesn’t need to be healed, but YOUR HEART, YOUR HEART needs to be healed”  OUCH !!!!!  I had devoted so much to what is the plan, when will GOD reveal this plan to me, there is a reason, right GOD?  Has if I, I had any right to question GOD.  The GOD who spoke this entire world into existence with no effort, the GOD who created me & Jeremy for him.  This is God’s word from the beginning to the end.  God had a plan to prevent me from dying and spending eternity separated from him in a place called Hell, so one day because I have put my faith in Christ alone, I GET TO LIVE in his glory, I GET TO LIVE IN HIS GLORY.    
               My sister’s church was doing a fundraiser for their mission trip to Brazil and has a girl making signs.  I started last year in December when Jeremy was so sick and hospitalized twice, had surgery for cellulitis.  Reading the Proverbs and created me a little quote, “I don’t trust the Journey but the GOD who determines my journey”.  Proverbs 3:5-6, Trust in the Lord with all your heart and do not lean on your own understanding.  In all ways acknowledge him and he will make straight your path.  Did I really trust GOD or was I trusting the journey and just making it threw.  Then a short month later GOD brought me down to my knees quickly the day, mom passed away suddenly, I truly believe she passed away instantly, before I even laid her back in the seat or did any CPR.  Then Jeremy got so sick once again, and there have been many times in his life that I wasn’t sure if I would be bringing my boy back home with me or would he survive this, this day was one.  The day we got to the ER and his leg started bleeding through open wounds because his leg was so infected with MRSA and he honestly could have went septic at any time.      
My sister sent me this picture last night telling me my sign was ready and BAM, I have found my title and book cover for my book.  I still got to get busy to put all the thoughts, postings together. 
We had some exciting news, my nephew Joseph got married to his best friend of over 3 years, Tarron beautiful wedding.   They found out they are expecting the end of January and I am so freaking excited to be a Great Aunt, and know that I will ROCK it.  
Jeremy still battles UTI like a roller coaster so we started a new plan and went up a size in cathears so hopefully that will help ensure his bladder is empty, he ended up with a sinus infection we discovered that on the brain MRI to check for any changes in his brain which nothing new there.  We discovered he has acid reflux so we are treating that.   I finally have all the carpet out of our house, Jeremy's room was the last one.  Jeremy’s Neurologist who we’ve had since he was 6 weeks old retired, Dr. G. Steve Miller so we have an appointment with a new one in September.  Jeremy went to Camp Barnabas for the 4th year and had an amazing time, met many new friends.  He has readjusted back to Jeremy World, he is happy, feeling good and we are just going to enjoy the rest of summer.  I boarded a plane to Detroit, Michigan on Monday with Kristy, a good friend.  We had a blast, rented a car and drove to Port Huron, Michigan.  I was asked, “why did I pick that place”, well I have never been to Michigan and it was absolutely 100% gorgeous, the Lake Huron is so beautiful blue and the weather was cool, breezy 76 degrees.  Molly the cat was happy that her humans returned home, although my nephew stayed with so she wouldn’t be alone. 
Enjoy the pictures…
Sat. morning with a friend 

Jeremy w/ Dr. Miller, we loved him 

His favorite thing eat out with staff 

So many great pictures, but this was one of my favorites

The lazy cat 

Loved watching the Freighters come in 

The amazing bluest water I've ever seen 

Vacation 2018 

Ft. Graiot Lightehouse, we climbed 94 steps 

Of course 

Not sure, he's just goofy 

Such fun 

New Friends from Eagle Heights Baptist Ministry

The Famous book cover !!!!

Friday, November 10, 2017

The freedom of summer

               I have been working on this update for several months which is the norm for me.  The thought still remains in my heart to one day write a book/books to be inspirational faith based or possible children’s books.  will be a series of children’s books.  For the time being there is not enough time to pursue this avenue. 

I found a previous post about warning alarm because like so many mornings I am woke up from a deep sleep with my security alarm blaring because my son will drop something and my alarm picks it up as a window break.  The alarm is to warn me if someone is trying to get into my house.  I started to notice road construction and the warnings that go with it, especially traveling on I-44, you see, “road construction ahead” and then “left lane ends in 1 mile” and the final flashing lights “merge now” yet so many drivers push that to the limits.  We see warning signs put in place to protect us, GOD has given us warning signs but yet we often push it to the limit.  This has been my heart and realize I need to make more effort to pray for our leaders and cry out to God and turn from my sins.  2 Chronicles 7:14, “and my people who are called by my name humble themselves and pray and seek my face and turn from their wicked ways, then I will hear heaven, will forgive their sin and heal their land”      

We started a new era as Jeremy turned 18 in August.  Where did the time go? because I’m pretty sure he was just born.  It has been a little crazy with all the hoop jumping.  I went through the process and obtained guardianship, that was a fairly easy process.  I do however stand my ground and feel it’s crazy as his mom for the past 18 years to pay a lawyer and petition the courts to retain that right.  But it is done.  I filed for SSI the day after he turned 18 and that has been a hassle, but I am finally his representative payee and we are on that journey.  We experienced our first hiccup with medical, we went to the ER and was shuffled over to the adult ER.  I thought I would have an anxiety attack or need bail money and I wasn’t prepared for that.  It turned out not to be so bad, although eye opening.  I feel the doctors should have listened to my expertise more and we will get there.  Our nurse was so amazing and helped the entire process.  I’ve been talking about a family advisory council for the adult hospital and gears are turning to get that started.     

Jeremy had an amazing summer, he was so happy, had fun, rested, full of energy and healthy.  He attended Camp Barnabas again for the 3rd summer and had a blast.  I was grateful that Kristy could take Jeremy to camp for me so I could board a plane to Jacksonville, FL.  This was my first vacation that was just vacation, a week of nothing to do with medical, no conference just fun in the sun.  I spent the week with a friend, going to the ocean, all the amazing wonders of GOD and relaxing.   We both enjoyed our week of fun but was glad to be reunited and back home.  Mollie the cat however, was in mourning for most the week, but was grateful to a friend, Misty who came by to check on her, keep her fed and watered and attention.   

Jeremy managed to go 4 months with no antibiotic but end of summer developed an ear infection and then, strep throat and UTI.  We got some results back from the Immunologist and Jeremy has low T- cell Lymphocytes so he can’t fight a viral infections.  We are waiting for one more test results to come back to see if this is genetic and where do we go from here.  I have to say that news took me back.  I have seen Jeremy regress over the past 4 years, motor and definitely in immunity.  He woke up one Saturday morning with a little pimple on his right elbow opposite side of the horror cellulitis infections last year.  I used all the education I had learned on skin infections from Dr. Martin, our amazing infectious disease doctor.  He started running a fever and by early Sunday morning high fever, the pimple was gone, but the area was red, warm to the touch so off to the ER we went.  I think the quick notice of this, slowing it down & getting treated definitely getting him on the right antibiotic prevented it from getting worse.   

I then got to take a fall trip with my best friend, Kelly Hamilton to Seattle Washington it was so beautiful with so many amazing sights.    

Sat morning trip to WalMart with Kristy

Going on a trip 

He just got his new glasses, isn't he handsome?  

Mollie's new mansion 

OGE lineman's Expo 

His friend Matt at his birthday party 

One of Jeremy's best friends, Trey

His tent he bought with his money

50's day at school 

Jeremy's new ride, hew as so proud 

Seattle Aquarium, I felt like I was home being mean mugged

Seattle Space Needle, amazing 

I made her ride the GREAT Seattle Wheel

Friday, May 5, 2017

Tell your heart to beat again !!!!!!!

I heard this song on Tuesday, like I have many times, BUT, it seem to put words to what my heart was feeling and trying to say.      

Jeremy has had a rough start to the year, he continues to have multiple appointments, multiple illness resulting in multiple antibiotics.  Then a recent hospitalization for an UTI with 2 different strands of bacteria and 2 skin infections with a different strand of bacteria that grew out MRSA.  Jeremy was having signs of an UTI, showed me his elbow which had a sore on it.  We went to see his doctor on Friday, did an urine culture & skin culture and we started on an antibiotic.  He had some red looking sores on his lower leg but they were just red looking sores.  He maintained on Saturday, his urine was clearing up, his elbow was looking a little better and the bumps on his leg seemed to disappear, I also know it takes a while for the antibiotic to start working.  His home health nurse came in Sunday and literally this was GOD because she did an assessment and right away noticed his leg was swollen and not in good shape.  We got to the ER and within an hour his leg started to ooze a little, then drain.  We were admitted, numerous test, IV antibiotics.  The next day he felt so bad and had surgery to clean out a nasty abscess basically the entire length of his leg, surgeon placed 3 drains and then packed the elbow.  The Infectious disease doctor got on board and narrowed down antibiotics that would target the strains of bacteria he had.  We were discharged with multiple follow up appointments, 2 different antibiotics and a plan to prevent future staph infections of the skin.  This was scary, how quickly it spread, how quickly Jeremy crashed and he was so close to being septic, dying or possibly could have lost his leg.  His recovering has been slow, and we just allow him to rest when needed.  The last few days he is being more himself, laughing, ornery, back to doing his mean mugging look while doing his donkey kick.    I’m still battling lack of nursing and OHCA decided he only needs 5 days a week but I found out yesterday the doctor revoked his decision and we keep our days. 

 Jeremy has a week left of school, we will prepare for summer camp the end of June and when he goes to camp I get to go to Florida for a week.    

 January 24, was a day that shattered my world, literally.  I took off work early to go to mom’s and ride with her and my sister to my uncle’s funeral.  We stopped in Chandler to pick up my aunt (my dad’s only sibling still living).  We talked, laughed, enjoyed the time.  Mom started to not feel well after the funeral when we were at my cousin’s house, so we headed home, dropped off my aunt at her house, snapped a few selfies one with my aunt & one with my mom.  I rode in the back with mom.  We headed home and approximately 3 miles from mom’s house she died of a massive heart attack.  I was giving her CPR until a nurse friend arrived and then paramedics.  We thought at one point she was responding.  When we arrived at the hospital we were not expecting the ER doctors to tell us that mom didn’t survive and Paramedics never regained a pulse.  I was in shock, never when everything was happening did it dawn on me that mom wouldn’t survive.  My mom, the woman who had always been in my life, was there when I was born, she not only taught me about GOD but she showed me GOD.  A true Proverbs 31 woman, loved her husband when he wasn’t loveable, loved her children when we weren’t loveable, mom took care of her family, never thought of herself, a wise woman, full of wisdom and she was gone.   

I don’t understand and never will, but GOD doesn’t call me to understand but to trust him.  That is faith.  His perfect ways tells me I won’t understand but that is the freedom, I know GOD has this, he is working everything out for good.  This is my temporary home, my plan is when I pass away from this earth in which I will is to step over to the other side, in GOD’s presence, to see him face to face, to no longer wonder about all the complications of this world because they will have all faded away.  It will at that moment be clear.  I am human and weak, I am human and in need of a Savior and GOD is that savior.    

Loosing mom I wasn’t prepared for, I found my life shattered in a way it’s never been, a time that this world drives me to my knees, you think you are never going to get back to the you that used to be.  I’ve had to give myself pep talks, I’ve had to tell myself to breathe, I had to tell myself to get up and live life.          

Trust GOD-his perfect time and will and plan !!!!!!! 

You're shattered
Like you've never been before
The life you knew
In a thousand pieces on the floor
And words fall short in times like these
When this world drives you to your knees
You think you're never gonna get back
To the you that used to be

Just let that word wash over you
It's alright now
Love's healing hands have pulled you through
So get back up, take step one
Leave the darkness, feel the sun
Cause your story's far from over
And your journey's just begun

Let every heartbreak
And every scar
Be a picture that reminds you
Who has carried you this far
'Cause love sees farther than you ever could
In this moment heaven's working
Everything for your good

Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat again
Your heart to beat again

Words & song By Danny Goeky 

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.

Thursday, December 31, 2015

The end of another year...

I always like to reflect back as we say good-bye to another year and welcome in another new one. 

Jeremy gave me a run for my money this year and this started the 2nd week in February.  He ran a little fever one day, was fine the next, to great, to waking up with a low fever to spiking a high fever by afternoon which earned us more frequent flyer miles to running tests.   He then started that night with desaturations and only maintaining in the low 90’s on 2.5lpm of oxygen, if I had turned him up anymore he would have been sent to the hospital via ambulance and would have been intubated to give his lungs & heart a break so they wouldn’t work so hard.  He maintained through the night and trip next day to doctor he was diagnosed with pneumonia & strep throat and put on a strong antibiotic.  Then he decided in March that he was going to throw us all for a loop and had blood in his urine so we earned more frequent flyer miles a trip to the ER to only be admitted and observed for 2 days.  A trip to the heart & pulmonary doctors determined he has developed pulmonary hypertension so that will be watched closely.  He did get to go for a full week to Camp Barnabas, and had a great time & his summer was amazing.  We started the fall out with being told, Jeremy no longer has a clinical diagnoses, the test we did produced changes on many genes but produced no answers in relationship to any of his conditions.  Then the whirlwind beings, a bad UTI but threw us a curve with some other issues and ended up with a really bad ear infection.  We got that cleared up only to see the dentist for a 6 month check and for it to be determined he had an abscessed tooth that needed to be pulled.  I thought we had got everything with his head, well December 11 something felt wrong with him, he was increasing in aggression, head hurting, tired, loss of appetite so a trip to the doctor to get a CT scan & shunt series earned us more frequent flyer miles with a 3:30pm phone call to head to the ER his shunt tubing had dislodged so we were admitted, surgery the next day to replace the long lost tubing and we were home by Sunday. 

I end this year with almost 25 years at OG&E and it continues to be such an awesome job, with some amazing co-workers, several whom were also having tough times of their own and then we had one lineman who lost his battle with cancer and we said Good-bye to him.  We lost several to retirements and gained new ones to replace them.   We moved into our new facility early November and it's been nice to have a new office, it is really awesome. 

I continue my mission with The Oklahoma Family Network celebrating almost 14 years.  I was heart-broken in early February when I lost my friend Super- Gavin, he was my buddy and I had set with him many times at the hospital, playing with him, listening to him and I loved that little guy.  I had a friend who I have known for many years she brought me coffee one morning while we were in the hospital in March, after she had a horrifying hospitalization a few weeks earlier with her daughter in critical condition and 2 months later she lost her precious Ginny Girl.  My executive director asked me about serving on a group, Heartland Genetic Collaborative on an advocate work group, we have monthly conference calls.  I was afforded the opportunity to attend the conference in Kansas City and meet several of the other advocates from other states, and it was nice to spend that time with them and learn about what they did in their states to help families and partnerships they have formed.  I made some great connections and new friends.  I was afforded the opportunity to attend the Executive Directors of the Parent 2 Parent of USA in Phoenix, AZ along with 12 of my other OFN co-workers in the fall and made some new connections there and meet up with one of my friends from the Genetic group and then meet a new one.  I was thrilled when an opportunity presented itself, a partnership with local physician in allowing the Oklahoma Family Network to be present in their clinic days to offer families that emotional support, informational and resource referral and I’m looking forward to that relationship coming into the next year.  I still continue my visits and reaching out to families which are my passion as well as doing sibshops, it never gets old. 

I started teaching Sunday school in May, something I’ve not done in a long time and I am so loving it and the children.  I love teaching them and their tender little hearts.  I am also enjoying Monday evenings sitting with my Pastor & his wife and listening to biblical counseling lessons on various topics.  I can use this to help not just families I connect with but, friends, co-workers, family and honestly ME. 

I was sadden after my cousin’s daughter Morgan had a bad wreck in December that in July she lost her life, she had battled so long & hard and came such a long way.  I had watched my cousin go through this through their daily post, prayer request. 

I have to say I was humbled this year.  I am not one to reach out for help, I struggle with when being asked what can we do, but I’m working on receiving that.  I have experienced such amazing freedom in my relationship with GOD, as I mature a little more in understanding and studying the word more.  I have been able to overcome some anxiety & fear with the help of God.  GOD is God, I have great comfort in his promises and that produces so much freedom.   I’m a sinner saved by his amazing grace and trusting his grace alone, through faith alone in Christ alone.  His death on the cross was absolutely all I need, and nothing I ever do will be enough but because his death on the cross that is absolutely all I need.


So, Hello & Welcome 2016………..