Welcome to Jeremy World : 2018

Friday, October 26, 2018

My Feet are on the Rock !!!

We were so excited to start September off with welcoming, my niece, Jeremy’s cousin, Brandi back to the USA after faithfully serving our God over in Brazil for the past several years. We have all missed her so much and so excited to have her back here with us.

My little mystery minion continues down that path. I notice when we got home from the airport that day he was tired, not really eating and starting to have some desaturations and a sporadic rash. We see the doctor the next day, did some blood work but nothing came up. He started that Thursday having major desaturations down into the 70’s, his school was amazing and worked to get him above 90 although he required more oxygen. I had a conversation with Dr. Walters. We went that afternoon to see our new Neurologist, Dr. Hussain and we love him he was very informative and listened to my concerns. The next day I have to admit I was preparing myself for a similar situation. As a mom I felt something wasn’t right with Jeremy, just could pinpoint what was going on. I start getting text right away about oxygen desaturations, turning him up. Then he’s down to 63, we are calling EMSA. I rush to school, calling doctor on the way to inform and receive a phone call asking me where I was they were going to transport him, I instructed to take him to St. Francis and I would follow but I was almost at the school. Then nothing prepares you for the scene of driving into the school parking to see EMSA and fire truck with lights knowing they are there for your son, you run in and no one will look you in the eye and you are not sure exactly how to expect to see your son. He was starting to come around and acting like himself so I took him to the ER, we didn’t get any answers but did have instructions to keep him on more oxygen and all test were coming back normal. The rest of that month and next was a barrage of doctor appointments, blood work, tests and eventually a nasty UTI. Jeremy still continues to have low T- Cells, and it seems that the only bacteria he grows for an UTI is the nasty klebsiella pneumoniae. We aren’t sure at this point why Jeremy is requiring more oxygen but he does. We will be repeating a sleep study end of December to check all of that.

We are enjoying fall, the weather has been amazing, we have all of our Halloween decorations out and ready for Halloween this week to hand out candy hopefully we will have some trick or treaters. Jeremy is doing well, very ornery, becoming verbal and the minion cat is spoiled and continues that pathway.

I am loving the song, “My feet are on the rock” by I am They. It seems to represent my life as I know many others right now. I see the clouds, winds roll in, waters rise, feel like I’m drowning. I refuse to give Fear a foot hold. I see joy, I see the joy because my faith is planted in Christ alone and his unchanging grace, he doesn’t change, he can’t change, GOD is GOD always and forever.

I can see the clouds roll in
And I can feel the wind as they try to shake me
I will not be moved
My feet are on the Rock

I can feel the waters rise
And I can hear the howling lies that haunt me
Fear won't hold me now
My feet are on the Rock

I can see the morning light
I can feel the joy on the horizon
Here my faith is found
I stand in solid ground!...

When I feel my hope about to break
I will cling to Your unchanging grace
Let the waters come and the earth give way
I'll be dancing in the rain!
My feet are on the Rock

On Christ the solid Rock I stand
All other ground is sinking sand
So stomp your feet and clap your hands
Our feet are on the Rock

I think one day this may be the introduction to my book.

There have been many times in Jeremy’s life that have hurt me to the core to the point that I felt like the breath was knocked out of me and all I could say was I can’t do this, GOD fix it. When Jeremy was born with multiple medical needs and required brain surgery the 2^nd day of his life, the 11 day NICU stay, test after test, diagnose after diagnose. I viewed this as unfair because I DIDN’T deserve it (believe me I cringe at this statement) I deserved a child that was perfectly healthy, I deserved better, he deserved better. I grew up with the thought process that everything happens for a reason, so what did I do? What is the reason? Why did it happen? Because so many times in our Christian life what do we do? We hand out pieces of advice based on a partial piece of a scripture that we can take and fit it into our little box we call life because it makes us feel good. We don’t read the before and after scripture or even study the context. I’m guilty of doing this more times than I can even remember, and I’ve had to repent of that. What does Ecclesiastes Chapter 3 tell us, basically there is a time for everything, so there must be a time for healing, because everything happens for a reason because Romans 8:28 tells us what? What else do we often do as Christians, we make everything about us, my hurt, my healing, my heart, my suffering. Jeremy didn’t deserve to require spinal surgery that would rock his entire core system, take away his mobility the one thing he dearly loved and long-term affect his health. I cried out to God to many times, heal him, let him walk again, this isn’t fair and we don’t deserve it. Then that day, that moment (there has been many) that GOD would speak to my heart as if to say, “Lora, Jeremy is fine he doesn’t need to be healed, but YOUR HEART, YOUR HEART needs to be healed” OUCH !!!!! I had devoted so much to what is the plan, when will GOD reveal this plan to me, there is a reason, right GOD? Has if I, I had any right to question GOD. The GOD who spoke this entire world into existence with no effort, the GOD who created me & Jeremy for him. This is God’s word from the beginning to the end. God had a plan to prevent me from dying and spending eternity separated from him in a place called Hell, so one day because I have put my faith in Christ alone, I GET TO LIVE in his glory, I GET TO LIVE IN HIS GLORY.

My sister’s church was doing a fundraiser for their mission trip to Brazil and has a girl making signs. I started last year in December when Jeremy was so sick and hospitalized twice, had surgery for cellulitis. Reading the Proverbs and created me a little quote, “I don’t trust the Journey but the GOD who determines my journey”. Proverbs 3:5-6, Trust in the Lord with all your heart and do not lean on your own understanding. In all ways acknowledge him and he will make straight your path. Did I really trust GOD or was I trusting the journey and just making it threw. Then a short month later GOD brought me down to my knees quickly the day, mom passed away suddenly, I truly believe she passed away instantly, before I even laid her back in the seat or did any CPR. Then Jeremy got so sick once again, and there have been many times in his life that I wasn’t sure if I would be bringing my boy back home with me or would he survive this, this day was one. The day we got to the ER and his leg started bleeding through open wounds because his leg was so infected with MRSA and he honestly could have went septic at any time.

My sister sent me this picture last night telling me my sign was ready and BAM, I have found my title and book cover for my book. I still got to get busy to put all the thoughts, postings together.

We had some exciting news, my nephew Joseph got married to his best friend of over 3 years, Tarron beautiful wedding. They found out they are expecting the end of January and I am so freaking excited to be a Great Aunt, and know that I will ROCK it.

Jeremy still battles UTI like a roller coaster so we started a new plan and went up a size in cathears so hopefully that will help ensure his bladder is empty, he ended up with a sinus infection we discovered that on the brain MRI to check for any changes in his brain which nothing new there. We discovered he has acid reflux so we are treating that. I finally have all the carpet out of our house, Jeremy's room was the last one. Jeremy’s Neurologist who we’ve had since he was 6 weeks old retired, Dr. G. Steve Miller so we have an appointment with a new one in September. Jeremy went to Camp Barnabas for the 4^th year and had an amazing time, met many new friends. He has readjusted back to Jeremy World, he is happy, feeling good and we are just going to enjoy the rest of summer. I boarded a plane to Detroit, Michigan on Monday with Kristy, a good friend. We had a blast, rented a car and drove to Port Huron, Michigan. I was asked, “why did I pick that place”, well I have never been to Michigan and it was absolutely 100% gorgeous, the Lake Huron is so beautiful blue and the weather was cool, breezy 76 degrees. Molly the cat was happy that her humans returned home, although my nephew stayed with so she wouldn’t be alone.

Enjoy the pictures…