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.