Medical, 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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