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………..    

Thursday, December 24, 2015

Lean not on my own understanding but in all ways Seek God !!!!!

Jeremy had such an amazing summer but I have to say this has been a crazy fall season.  We have enjoyed unseasonably warm temperatures (which I’m not going to complain).  We hit the floor running one awesome fall morning, a leisurely trip to our Neurologist for Botox injections ended with a visit to Dr. Cyrus.  We knew he had an UTI but that didn’t explain the pulling of his ear or rubbing his eye almost raw and I was frustrated because he was hurting but couldn’t figure it out.  Well come to find out he had a really bad ear infection, so with antibiotics he was better and on the mend.  We went to see our dentist for a 6 month check-up on Oct 1, found Jeremy an abscessed tooth, decision was made to remove it and surgery scheduled on October 13.  He did great through surgery and recovered so I thought wow that should take care of everything going on with his head.  He started back with putting his hand in his mouth and I couldn’t imagine that he had a bad tooth, or ear infection but that turned into increased crankiness, agitation and a visit to Pediatrician on Dec 11, nothing notable so a CT scan & shunt series was ordered, a 3:30pm phone call to go to the ER to possibly be admitted and his shunt tubing has dis-lodged.  Jeremy had surgery on Saturday, and recovered unbelievably quickly and we were discharged on that Sunday.  Jeremy has really been a different boy, it’s sad that sometimes I forget how bad he feels until I see how good he is feeling, this is absolutely hands down the very worst part of having a non-verbal child.  The results of the Whole Exome Sequencing test didn’t produce any answers.  I was disappointed as I just knew that something would surface.  They will re-run the data in a year and see if anything new is present with science or Jeremy.  We may someday receive an answer.      

I started in spring on an advocate work group for the Heartland Genetic Collaborative.  Our Heartland group covers 8 states, Iowa, Oklahoma, Arkansas, Missouri, Nebraska, Kansas, and South Dakota & North Dakota.  It was fun to attend the conference in Kansas City, and meet face to face the group in which we have a monthly conference call.  It was very informative and I learned from so many.  I then got to attend the National Parent to Parent conference in Phoenix, AZ at the end of October with my Oklahoma Family Network co-workers, a fun time as well as obtaining new information, and meeting new families.    Then in November we moved into a new facility at OG&E, it’s been in the works for several years and was completed, so I have had a busy time as well.  I started on Monday evenings with my Pastor and his wife, Karen, going through some biblical counseling lessons and that has been an awesome study time to learn and dig even deeper into the word of GOD and even learn more and more about him.  These are biblical principles I can apply to my life, as well as families I serve or people I run into on a daily basis.  I can say I’ve got to slow down, and quit being so busy the month of November & December were crazy busy and when I’m so busy I don’t listen for God’s voice. 

Mollie, the cat is still around and with us, such a crazy cat, but fun, keeps us entertained and tolerates Jeremy so well. 

I close this with God is good all the time, absolutely sovereign & merciful.  Proverbs 3:5-9, tells me to, “trust in the Lord with all your heart, and don’t lean on my own understanding.  In all ways acknowledge him, and he will make my path straight.  Do not be wise in my own eyes.  Fear the Lord and turn from evil.  It will be healing to your body and refreshment to your bones.  Honor the Lord from your wealth and from the first of all your produce”.  I don’t understand the why most the times and I can say one thing I have learned through this year, a lesson of hard knocks is to no longer ask why, but just trust God, his will & way is always better than mine and I will never be able to reason it out enough, my understanding is so limited.  My hope is found in faith alone, in Christ alone, in grace alone.