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 naïve, 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....

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 10^th 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 3^rd 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.
  
 

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 2^nd 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………..    

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.     

 

 

My white picket fence is gone, but replaced with Chain link fence....

August causes me to do reflect upon my life and I’m sure it’s because of many milestones in my life during that month.  I actually started this post August 1, I would read it, pray for God’s guidance and make changes.     

I remember as a little girl my dream was that prince charming would come riding up on a white horse, rescue me (not sure from what), we would live happily, married ever after, have 1 boy and 1 girl, cute little corner house with a white picket fence.  I’m sure I watched too many cartoons.   

I can say with all honesty today, my white picket fence is gone.  I am embarking upon the grand age of 50 as a divorced mom, a son with significant medical/developmental needs. 

It was on August 9, 16 years ago that I started my journey of first becoming mom, that switched quickly to a mom of a sick child.  I hated our 11 days in the NICU, it was day after day of bad news, he won’t walk, never talk, be deaf, blind and cognitively disabled.  There were so many “worse” days, but the day we found out about his heart was the “worse day” my 6 day old son.  My focus quickly switched to will he survive?  The first year of multiple testing, few new diagnoses, the heart Cath and then major open heart surgery.  It was actually September 2000 before I think we could classify Jeremy as stable.  Then in August of 2010, his first major spine surgery, that didn’t go well and also that year I started my journey as a single mom.         

I reflect back, spent time afraid, afraid of being alone, afraid God was going to take Jeremy.  There were many times I would cry out and yes question God why? Why is this happening?  I knew in my heart God has a plan & a reason.  I didn’t doubt God nor his plan, but I deserved an answer. 

It has been a road of hard knocks for me, some lessons were not learned the first time, some were harder than others, some were very painful, some I wasn’t sure I would recover let alone Jeremy.    There were many moments down on my knees when all I could do was look up to God and not utter a word but cry tears.   

I can say today with great joy and confidence, there is absolutely a reason, but (I always hated to hear the word but) I WILL NOT always understand the reason nor the plan, but again that is ok, because I have learned I don’t have to.  I believe Jeremiah 29:11, “For I know the plans that I have for you, declares the Lord, ‘plans for welfare and not for calamity to give you a future and a hope”  it says nothing about MY dreams, but again that is ok because as I have learned along the way, I want my dreams to be in line with the plan God has for my life.  I totally trust the GOD who created the plan for my life and Jeremy’s.   

Do I deserve an answer?  Honestly, I deserve to die and go to hell, to be separated for all eternity from God, but because of GOD’s mercy, what he did on that cross, suffered a death that even if I could have done it, would have all been in vain because I’m a sinner and needed his grace to save me.  God owes me nothing, he paid the ultimate price for my soul and I owe him everything because he’s given me a future beyond this world and hope beyond this world. 

Today, in Jeremy World, along with Mulley the cat, we have a chain link fence and I am good with that…    

The Same Power...........

It's been a long time since I've posted. 

Jeremy has 16 days of summer vacation left, where did it go.  We have had an absolutely nice summer, J-man gets up and gets to do his own thing.  Jeremy really enjoyed the week at Camp Barnabas.  We then took a joy ride the week after to Springfield to see Dr. Dan, and got there early enough we got to eat at Lambert’s which he dearly loves & laughs when they throw the rolls.  In the morning, when I unlock the door and turn off the alarm, Jeremy will scoot a kitchen chair to the window and watch for Kristy, his wonderful, awesome, HTS to come in.  Jeremy then starts talking up a storm.  Kristy has done some super fun things with Jeremy and we love her. 

I started teaching Sunday school this summer and am loving it, love the children and Jeremy has been going to Sunday school, sits good.  I am starting to try to transition him to worship, our first week he didn’t even make it to worship, but he will get there.        

Jeremy gets a new teacher this year and a bigger room, they got the expansion done and I'm so excited.  The same nurse who took care of him at school will also be there again this year.  We go meet the teacher and see his classroom on August 14. 

This weekend is our annual OGE expo, I take 3 of my nephews and they help with Jeremy while I work.  They love going, swimming in the pool and watching the lineman compete and getting free giveaways.  We come back Saturday exhausted. 

 

We did go back to Genetics 101, as Jeremy’s issues don’t seem to meet the FG syndrome diagnose.  We did see the New Geneticist who does

Telemedicine from Arkansas Children’s, he took Jeremy’s pictures and history and presented to a board of 25 Geneticist and no one had a clue or had seen a child similar.  We got approved and did the Full Exome Sequencing test, this will test his 46 chromosomes to see if there are additions or deletions.  We did this June 5 and it can take up to 6 months for any results. 

 

 We have had an amazing summer but we’ve had some not so great news

I was sad that my cousin’s daughter Morgan, passed away on July 3 after a long battle from a car accident in December.  Morgan was 16 when she had her wreck, turned 17 in the Children’s Hospital at Arkansas, she was doing good at rehab ready to be discharged in June when her organs started shutting down.  Morgan was an amazing young lady, dedicated to GOD and a ray of sunshine.   

Jeremy has had some major regression in his mobility, he will hardly use his walker, or stand on his legs very much and falls quickly.  Our PT feels that its related to his knee overcompensating.  We are going to try some knee braces to see if that does help him. 

We also got some not so great news at his last Pulmonologist appointment, the numbers that measure pulmonary hypertension continue to increase and although they aren’t to a point to treat, they continue to rise.  We will see the Pulmonologist in January and he will repeat an echo and keep tabs on this.  I don’t know what this means to Jeremy, but I suspect highly that winter bringing on colds, bronchitis, pneumonia is not going to be our friends or be kind.  Jeremy will have a higher risk of being hospitalized and on a vent.  The one thing that I do know, is the same power that rose Jesus from the Dead, the same power that commands the dead to wake, that moves mountains when he speaks, that can calm a raging sea, is living in me.  I have hope that his promises are true, in his strength there is nothing we can’t do.  Greater is he living in me, he’s conquered our enemy, no power of darkness, no weapon prevails.  I stand in Victory…. (The Same Power, Jeremy Camp).  This is quickly becoming one of my favorite songs. 

Back in the Life of “Undiagnosed” & Genetics -101…

 Jeremy was diagnosed with severe FG syndrome back in 2005 which at the time was a clinical diagnoses and one that he in fact did fit.  In fact there were 5-6 categories and Jeremy had 5-6 of the 7 characteristics of each category.    They since have researched and found at least one gene associated with FG syndrome, the MED12, which Jeremy in fact does not have.  I’ve known this for many years because we participated in a research study for FG and that was where we found the change on his L1cam gene located on the long arm of the Xq28 chromosome.  That is the brain gene, so I thought that could possibly answer a few questions.  Jeremy had spine surgery, complications, sick, then our local geneticist left so the issue was moved to the back burner.   We now do Tele-Genetics in Tulsa with a Geneticist from Arkansas Children’s Hospital.  I have met him on several occasions through St. Francis Children’s at a few conferences and the Heartland Genetic Conference this past April.  I thought this would be a good time to re-visit the issue to see if we could possibly get an answer, I’ve often wondered due to some issues Jeremy developed.  Dr. Schafer doesn’t feel Jeremy has FG and further research the change on his L1cam gene was so far down, like a connection of a connection that it’s not significant to Jeremy so that was good to know and in fact if we hadn’t been doing the research study that would have never been caught on a test.  So, Dr. Schafer is going to take Jeremy’s pictures, his characteristics and present to a board of 25 Geneticist to see, does anyone have or had a child similar to Jeremy, what do they think as Dr. Schafer has never had a child similar to Jeremy and he is stumped.  We are also getting approval for a fairly new test available the Whole Exnome Gene Sequencing this will go into a further level to see if there is any mutation/deletion/change on any of Jeremy’s Chromosomes.  We have to wait to see if insurance will approve the test, then it can take 6 months to get any sort of answer if we get any sort of answer, that is also a possibility.  I’m back to thinking we are going to name our own syndrome but that is life in Jeremy world, so we wait.

Jeremy finished 8^th grade and is out for the summer, he needs a break and some rest.  We have a few things planned, he will attend Camp Barnabas on June 7 and he will have so much fun.    We are just going to enjoy summer break....