Medical Issues, Opsoclonus Myoclonus Syndrome

3 Years Ago Today

3 Years Ago Today

3 Years Ago Today

At 4:30 pm, 3 Years Ago Today, our lives changed forever.  Opsoclonus Myoclonus Syndrome began to rear its ugly head.  Our lives were altered.  There has not been one person, in our home, that was not affected by this devastating condition.

This day comes and goes, for most people.  In our world, today, we see Co-Vid19, racism, and protests.  It seems like everything is falling apart.  In lieu of those horrendous things, I stop today and give thanks that my son is still alive.

Treatments

In the course of 36 mths, he has had

  • A bazillion IVs
  • 28 IVIG treatments which equals almost 250 hrs in a hospital
  • 2 Lumbar Punctures
  • 3 MRIs
  • 1 EEG
  • A bazillion labs
  • The second highest genetics battery of testing
  • 5 diagnosis’
  • 46 ACTH shots in the thigh
  • Countless high dose rounds of Dexamethasone
  • 3 rounds of Chemo
  • 5 hospitals
  • Countless stays in said hospitals
  • A Make A Wish trip
  • Wheelchair bound for months
  • Gait walker dependent for months
  • Ramp installation
  • Multiple rounds of high/low frequency acupuncture
  • Bioimpedance
  • Amish Iridology
  • A death sentence

My Son

He is a warrior.  This child has been prayed over by hundreds of people.  Donations have helped us travel many miles to seek help.  Many tears have been shed.  Faith has been torn down and redeveloped.  Hope has abounded.  In 2017, our lives changed.  2018, we were given a new diagnosis and told to take him home until he “succumbs.”  In 2019, we got the “old” diagnosis back and were given hope.  Now, in 2020, my baby is not only alive but has graduated from kindergarten and lost 2 teeth.

3 Years Ago Today

How I Feel

My gut aches.  I am physically ill at the pain that he has gone through.  There has been great pain.  No one will ever know what he and I have been through together.  There is a bond that we have because through it all, it’s been Hunter and me.  Bart has been amazing.  He goes when he can.  The support, love, devotion, and still have to deal with other kids and a full-time job.  My children.  Family.  Church.  Friends.

I know Christ died on the cross to heal Hunter.  It just has not manifested, completely in his body.  We still do treatments every month.  He still struggles in some areas and tremors are always there.  We still worry about when he gets sick and a flare-up.  I still carry around the “what-if” guilt.  It is still there and I am now praying for deliverance for that guilt.

My Baby

He is busy.  Mouthy.  He pees on kittens occasionally.  There are still some fits, tremors, eye twitches, and speech issues.  Yet, there are no more rages (praise God), no more ACTH shots, no more OCD (for the most part) issues.  Treatments are easier because he is a pro at getting an IV.  Meds are taken with grace and not a fight.  He is aware that he has OMS and is learning about his condition.

3 Years Ago Today

My baby runs, plays baseball, jumps, dances, and says things like “Taco Tuesday and Hump Day.”  He has changed his name from Hunter to Kid to Mario.  I’m no longer “mom” because that is old, done, gone…I am not Princess Peach.  He apologizes when he is wrong.  Loves to have me smell his hair and say “it smells like rainbows and sunshine” after a bath.

He is alive.  Death from OMS is not in his future.  God has big plans for him and He has allowed me to be front and center.  The phrase God is good all the time and all the time God is good runs through my head.  I never thought I’d be able to say that and mean that again.

Yet…He is good.

3 Years Ago Today

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Opsoclonus Myoclonus Syndrome

Who Knew Almost a Month Ago

Who Knew Almost a Month Ago

Who Knew Almost a Month Ago

That that hankering to cook for a month was a nudging from Jesus?

Not I said the fly.

I just knew that I wanted to cook and I wanted to cook a lot.  Well, I say that and I need to add that we were fixing to get meat.  We buy a cow every year and the time had come for our cow to be processed.

What I Thought was a Necessity

There were about 8 roasts that needed to be used before we got more.  I wanted to cook those up.  In doing so, I thought I’d just get a big pack of chicken as well.  Also, I scoured all the goodies that I had forgotten about in my pantry/fridge/freezer area.

Once all was said and done, I had enough meals to last from June 6 to July 21st.  Today, I was looking at my list and my calendar.  Once looking and taking more inventory of things, I have until July 31st in meals.

In the end, it wasn’t the roasts that *had* to be cooked.  It was the prompting of the Lord to cook and prepare for this upcoming trip.  We had NO intentions of going this month because of so many reasons.  He just worked it out.

WOW.

Do you know how easy that makes my life?  I don’t have to think about anything.  There is a calendar that I keep on my fridge.  On that fridge, I have down what we are having, so I do not even have to use my brain.  My kids look at the day and go to the freezer.

The reason why I have been able to stretch it is that we have had to have been able to eat leftovers.  I did not account for that at all.  Normally, we don’t have a lot of leftovers and what we do, we eat for lunch.  That saves on our grocery bill because I do not have to buy as much for lunches.

Quick Decision

All that being said, we made a spur of the moment decision for Hunter and me to go to St. Augustine for treatment.  We went this time last year and he needs a one-day treatment.  By having suppers ready, I do not have to add that stress to my plate.  Big Daddy does not have to worry about what is for supper.  It is done.

My Village

Another reason we can pick up and go is that I have a village.  I have Big Daddy, my mama, my big girls, my son-in-law, and a dear friend who picks up the slack to watch my kids.  If it weren’t for those people, I could not do what I do.

I am so grateful that they are willing to help me and my family.  It is such a blessing.  They all want Hunter well, so there are so many prayers by so many people.  To actually have people willing to be the hands and feet of Jesus so I can travel with him…precious to my soul.

Prayers appreciated for next week.  Safe travels for Hunter and me, an uneventful week, and my family holding down the fort.

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Traveling Home From Florida

Traveling Home From Florida

Traveling Home From Florida

Traveling Home From Florida.  We were driving for 13 or so hours.  This was a bizarre trip full of unexpected ups and downs.  Holistic treatment from a self-professed “quack” is quite the experience.

Our family is beyond thankful that we met that “quack.”  Also, that we took a chance to see what could happen if we stepped out on faith.  We allowed the Lord to dictate every move and His Name is glorified.

As a bonus, we saw the World’s Largest Cedar Bucket and the World’s Largest Peanut.

As an added bonus, I’m gonna see my sister.  Once I get home, I get to see my daughter and my animals.

It has been a trip that I do not believe I will ever forget.

Going Back

I believe we will try to go back every year.  It can’t hurt and it absolutely optimizes his health.  This year (2020) is a little strange because all traveling is banned due to co-vid19.  It makes me sad I can’t see my friends and go through this bizarre and amazing treatment again!

I just can’t speak enough of what a great experience this has been.  Honestly, I may try and save up so each of my family members can go through this treatment.  The first treatment takes 3 days.  Any other treatments (every year if you choose) is a one day treatment.  Though, you can do another 3 day, if you would like.

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My Boy is WALKING

My Boy is WALKING

Walking

My Boy is WALKING after 3 intensive days of therapy.  I can’t even adequately verbalize my emotions.  Amazingly, I watched him stand up, by himself.  As a result, this was a moment I will never forget.  Then, because He is awesome, he RUNS to the ocean.  I’m so thankful that I caught that on my camera.  I got the best video and ironically, my camera attached a still shot.  Yes, it is framed, in my house.  Hunter, running to the ocean, carrying a stick.  Fearless, confident, and strong.  I’m amazed at God’s goodness.  We still have a long road to go.  Realistically, this is an unknown condition.  God has healed him…we are just waiting for the complete manifestation of that healing in his little body.

Let’s Just Absorb

My Boy is WALKING!!!!!!!!!!!

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