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