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....

Compassion and Mercy

Jeremy loves to play videos/music on his I-phone over and over so I have listened to Veggie Tales, Jonah and the big fish too numerous to count.  I watch a little boy and a cat extend compassion and mercy to each other constantly.  Jonah thought he was above needing compassion and mercy but he felt that the Ninevites didn't deserve God's compassion or mercy, when in fact when Jonah was in the belly of the whale, God extended compassion and mercy, plus a second chance to do what GOD had asked.  The truth be known the entire world needs GOD'S compassion and mercy every day and my prayer has been that I will extend compassion and mercy.       

We do love spring, these warm days.  Jeremy gets to play outside and I can open the windows and let the fresh air blow.  We already had a round of tornadoes that were close to us and we were actually headed to our shelter when we got the all clear.  I wasn't ready, but now the shelter is.  I have us a few folding chairs, a sleeping bag, a plastic container with medical supply and necessities and a tank of oxygen.   

Jeremy gave us another scare on March 22, an awesome Sunday afternoon.  Jeremy had blood in his urine and we didn't know the cause so a trip to the ER got us admitted for 2 days for observation.  Jeremy had also been irritable and cranky the week before so we didn't know if the kidney stone was moving, and to be honest we still don't know the exact cause.  His doctors suspect that he had an UTI, his bladder was already irritated from the in and out catheterization causing some possible trauma.  He then pulled out an in-dwelling catheter while in the hospital but had no trauma.  If it happens again his Urologist will have to do a scope.  Jeremy did get to stay home from school for 2 weeks, which wasn't a good thing he loves school but he needed to heal and wait until the indwelling catheter was removed.  We have had problems trying to get consistent nursing staff but we are getting close to being back to full staff.  It has been a rough few weeks.

Jeremy had a visit with our cardiologist and an echocardiogram.  His heart looks very similar to last year's echo, so she is happy with that.  His heart is starting to show signs that it's getting crowded so we will watch that and go back in another year. 

We did enjoy the Easter weekend, Jeremy got to go back to church and then a family dinner out at Granny's was nice.  Jeremy had so much fun.   



Jeremy at the hospital, not happy

Patriotic Jeremy @ school



Jeremy after school

Jeremy and Mulley
 



Easter basket goodies

I just gave him his new Iphone



Mollie relaxing in the window

 

Recovery mode

My goal in starting this blog was to keep people updated on Jeremy.  Then I wanted to offer support to other families raising a child with chronic medical/developmental needs and to be an encouragement.  I wanted others to see there is joy in life with GOD in even the most trying circumstances.  My long term goal was to eventually write a book about living in Jeremy world, which is where I got the title, Welcome to Jeremy World.  I want it to be about Jeremy's world, I don't want to box cut him to fit into the world but the other way around.  This seem to be a good place to gather my thoughts and eventually get my contents.  Then GOD sent us the side-kick, the Mulley cat so I changed the blog and added including Mulley (her name is Mollie but that is how Jeremy pronounces it) remember this is about Jeremy world.  I then started to ponder writing a series of children's books with these 2 funny characters because there isn't much "Normal" in this world and I think people forget that.  I however am constantly reminded of it because again I live in Jeremy world including Mulley.  I'm not sure which direction GOD is leading me so I continue to blog.     

Jeremy got really sick a few weeks ago, but he is in full recovery mode.  He started running a high fever, we checked him for flu, UTI and both were negative.  He stayed home from school for a day, but played, acted like himself, so the next day he went back to school.  We had a few nice spring like days so he played outside.  Thursday morning he woke up with yet another high fever, that seem to have a vengeance.  Jeremy was maintaining his oxygen and heart rate, but Cyrus felt since his fever was back we test needed to be ordered.  We did a chest X-ray, CBC and blood cultures.  Jeremy's nurse was scheduled to be at the house until midnight so I was able to get some sleep.  Jeremy started about 1am, with high fever, couldn't maintain his saturated oxygen levels, he was working hard to keep it between 88 -90 on 2.5 liters of oxygen and if he took his nose cannula off (which he does at times)  he dropped to 73 and was taking him a while to get back up.  Jeremy is on oxygen 24/7 so we have it at home, plus we do continuous pulse ox at night.  I was monitoring him closely and knew what to watch for.  I can tell you, he scared me many times, as a mom of a child with chronic health conditions my son keeps me grounded and makes me realize how fragile life can be.  I was scared, scared that Jeremy might not survive this sickness and that he was going to take his last breathe.  I watched him like a hawk from 1am to 6:30am and was exhausted.  Jeremy finally started maintaining his oxygen at 93, so I turned it down to 2 but left it there to give him a rest.  The results where viral pneumonia, elevated white blood count and strep, blood cultures were coming back negative.  We seen Cyrus partner that afternoon, she started an antibiotic and asked if we wanted to be admitted because he was there.  I was trying hard to keep him out of the hospital but I was also on the fence, exhausted, afraid of another repeat night and me rushing him by ambulance to the ER.  I opted for us to go home, where I knew he would be comfortable.  Jeremy did much better that night, fever broke, he was maintaining his oxygen at 93 on 2.0 and he slept soundly.  He did stay home from school for 2 weeks, but is back to his baseline. 

If he ever requires 3 liters of oxygen for more than 30 minutes his Pulmonologist says he needs to be in the hospital so they can give him some assistance, which would mean he would need to be put on the vent, to give him lungs/heart a break.

I was driving to Muskogee and that was my first quiet time that week to where I can sing out to God, worship him, and seek  his face.  It's like GOD is starting to teach me compassion and mercy, he extended it to me and how I need to extend it to others.    The fact that I have this amazing Grace.  I have my total faith, trust and life in GOD and I know at the end of my life when I stand before God, that I WILL HAVE HAD EVERYTHING BECAUSE I HAVE GOD.  I also know God has plans, reason beyond my comprehension and I won't understand them all, but I don't have to because I have my faith in GOD.

Here are a few pictures of Jeremy world....

Beautiful Sunrise, waiting on bus
 

Mollie enjoy the spring weather

A tired boy, ready for bed

Cat in a box
 

Finally feeling better

To much time together

Mollie watching it snow
 

Mollie in a box

Ready to pounce on Jeremy

Ready for a break