Wednesday, December 31, 2014

End of a GREAT Year !!!!!

Well here we are again, December 31, 2014, once again getting ready to welcome another New year.  I reflect back over the past year and highlights. 

I'm still blessed with my wonderful job at OG&E, will be celebrating 24 years in March.  The year started in January with me learning a new process in the way my job as a scheduler was done.  It also came with a new boss, and many new co-workers.  It was all a good transition.  I continue work with the Oklahoma Family Network, which I attribute it to also being my therapy, I've met many new families this year that always bless my life. 

We were due our 6 month Private duty nursing review the end of January and ended up having to file an appeal as we were denied nursing, and I felt that Jeremy's health had remained the same.  Jeremy like normal had his own agenda, and about the time we were awarded our private duty nursing back within the month Jeremy's health was taking a severe curve down.  He had some freaky episode, we assume a seizure that took him 45 minutes to regain his mobility.  He then started getting sick frequently, out of breath and just not tolerating much of life, we started to notice blue fingernails and with the month of April we added a new specialist to our already long list, Dr. Walters, Pediatric Pulmonologist.  Jeremy now requires 1 liter of oxygen 24/7 through a nose cannula, he does good but still has time that he will desaturated.  He also requires periodic pulse ox checks and continuous monitoring at night.  Jeremy has stayed healthy since that point, his last UTI was in June.  We have had lots of staff changes this year for Jeremy, but replacements have all been good and I try to keep an open mind.  Jeremy got to attend a weekend camp, Camp Barnabas, and he did great, had such a great time.  I have already enrolled him for the summer camp that is a week long.  Jeremy's spine does continue to progress but no plans for surgery, it's a tough surgery and will produce some of it's own issues. 

We continue to have our crazy cat, Mulley, she is fun to have around, does the silliest things. 

We continue to be blessed with our church, Sapulpa Bible Church, the people we attend with, the pastor, worshipping GOD in songs and preaching of his word.  GOD really started teaching me, how do I respond to the trials in my life and I want people to see God in my life, point them in his direction, this life is temporary and I need to be more concerned with eternity.  I realize that so many times people don't have GOD, they are having a bad day and I need to exhibit more compassion.  I'm not where I was but I'm not where I need to be.  God search me and try me. 

We normally start out the new year with spending the night at Granny's, but with Jeremy being on oxygen it's really hard to carry all his equipment with us and easier to stay at home, so that is where we will bring in the New year. 

Here are a few pictures of the craziest in our house..  

Friday, October 10, 2014

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. 

Friday, April 25, 2014

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”     

Tuesday, April 22, 2014

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 20th 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.    

Thursday, February 27, 2014

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.....