Cooking, Medical

Relearning How to Cook After 30 Yrs of Butter

 

Eat Bark, call it chocolate

No More Bark for You

I always joked my sister has nothing but bark, twigs, and grass blades in her house.  There was no bark at my house.  Her kids loved to come here and eat things that were not healthy.

I’m a good aunt like that.

Relearning how to cook is like trying to crochet a blanket, underwater, for a seagull.  It is not fun.  I do not enjoy it.  Change is not cool.

But.

I love my son.

During our time in Florida, we learned that Hunter has *several* food allergies.  Things I have cooked with since the beginning of time, I can no longer use.

Off Limits

Garlic.

Beef.

Dairy.

Eggs.

Gluten.

Nuts.

I just put a 500 lb cow in my freezer.

The one thing I season my food with (my lovely seasoning mix), I can’t.  I love garlic.

Dairy.  Goodbye love of cheese and adding cheese to every single dish.  Every.  Single.  Dish.  Butter.  BUTTER.

B.  U.  T.  T.  E.  R.

When I make soup, 98% of them have heavy cream, sour cream, cream cheese, cheese, milk.  How will I make soup????!!!

Chicken bouillon?  Gone.  Beef bouillon?  No Bueno.

No.  Chicken broth with cream of chicken soup, butter, heavy cream, garlic, and cheese.

No broth people of internet land…..that hurts.

Bread, pasta, my heart, and soul in eatable form.

Nuts, I can take them or leave them.

I am still going to cook.  Relearning healthy ways to cook will create good habits in my children.  Hopefully, we will lose some weight (well, Big Daddy and me).

This change will be good for Hunter.  It will calm the inflammation down, in his brain.  By calming that inflammation down, I hope that his progression will continue.  His health is number one, right now.

There are still some things I will cook, normally, but adjust for him.  Be on the lookout for lots of hits and lots of misses in my new recipes.

It’s all about the journey, right?

Inspirational Thoughts, Medical

Part 5: *Whatever* May Come My Way

Hope…..my theme word since May 2015.  Hope showed back up on July 8, 2018….B and I were late for church again (let us have a SHOCKER moment), luckily, he left the kids and me off at the door.  That allowed us to find a seat (in front of our favorite humans, Mr. Cliff and Ms. Jan.  While the kids sat down, I scurried Hunter off to his class.  For the purpose of playing with his “brother” and then I could sit in peace for a few minutes.

Well, God is the God of peace, but He also has an agenda.  As sweet Grace was doing worship, she started a song that I had never heard of “Come What May.”  Gracious.

Come What May:

In death and life, I follow You
In every season, this be true
‘Cause I chose this path and I made this vow
And I will never turn around

Nothing can hold me back from Your love
I’m following You, Jesus
Whatever may come my way

To live is Christ, to die is gain
I give it all for love’s true name
It brands my heart, and now I will rise
To bear the name of Jesus Christ

Nothing can hold me back from Your love
I’m following You, Jesus
Whatever may come my way

Come what may, I will obey
‘Cause I find my joy in bringing You praise

I will obey You, God, whatever man may say 
I stand on promises I know my God has made 
With no regrets in me, my lips will praise Your name 
And though the earth gives way, I will not be afraid 

‘Cause You are the Lord of Lords, You open every door 
You stand in victory, and now my heart is Yours 
I will trust in You, God, and I will not be moved 
When persecution comes, I choose to stand with You

I bolded what stopped me in my tracks.  Again, my head was down, I was singing in my spirit and then when those, unexpected verses (still, I did not know this song) came on…..my body started to react, and my hands were flying up in the air worshipping Jesus.  I almost, just almost, stood on the chair to get closer to God (kind of like southern women who make their hairs real big….the bigger the hair, the closer to God status).

In A Moment

In a moment, I looked over and saw Richie (our pastor) standing by Bart.  He asked if we would be willing to share our testimony about what has been going on.  We said yes, but my mind (flesh) was screaming…I have nothing to say.  I mean nothing is in my head. What on earth?

Things have been tough around my neck of the woods.  Every single child is struggling with something, as are Bart and I.  Our marriage is strained, our minds are twisted, we are feeling very alone, unloved, and with all that is going on……..we still have the massive needs of Hunter.

When this song was over, Richie said that he felt like the Lord was leading him to ask us to speak because man is telling us so much…yet we are trying so hard to seek His face.  There are days, when I seek His face, with my eyes shut.  You know, when children play hide and seek…if their little eyes are closed, they can’t see you and you can’t see me, but we can turn our heads to a voice….that’s kind of like the life we all had been living.

The Baseball Cap…Let Hope Arise

Hope

Finally, we have answers to our medical questions, in regards to Hunter.  Yet, his doctor is still trying to get us to nail jello to a wall.  First, he has strep, then he has Cerebellitis, then there is the diagnosis of OMS, next is possibly has SCA. Un the end, he has 1 copy of the MRE11A mutation on gene 11, which correlates with ATLD1, then he has degenerative ataxia of unknown etiology.  Blah blah blah blah.  I am SO sick of listening to the voice of man dictating every aspect of Hunter’s life.  Sick.  Of.  It.

As we got up there, we made it through the testimony….only to be blindsided by a baseball cap……

 

Family, Medical

Part 3: Meet My Okapi

As we were finishing up an “unconventional” treatment plan for our son, we decided to give our family a bit of respite.  When you have 11 people in your immediate, your feet are under my table for food, family….everyone is going in a different direction.  We have one struggling with depression, one planning her life, one who can’t keep her head above the waves, one who is ready to launch his lead, provide, protect mentality, one who…as the years go by….the deficit and valley gets larger and larger, one who is stepping into puberty, and one who can either walk or not walk based on any given day and circumstances.  Add that to a mentally exhausted mama, overworked daddy and a strained marriage…..we *all* needed new scenery.

5 days after my son’s treatment….this happened:

When you see your son walk, for the first time….unassisted….in MONTHS.

You CHOOSE to give God the glory because He is the only one who deserves it.

God is writing Hunter’s story.  He has been writing since before He created the Earth.

I just get to sit on the sidelines and enjoy the view.

He has all the provisions, in place, for Hunter and what he is dealing with and the all trials that he is currently going through.

God is good.  He is faithful.

Our family will heal……….our son WILL heal.

 

Inspirational Thoughts, Medical

We Interrupt This Regularly Scheduled Series For an Important Announcement

Image result for superhero status

My Boy is a Star!

Please head on over to LOCAL WPSD-TV 6 and see my boy show off his skills 🙂

You can also go to Hunter the Superhero on our fundraising site to see what is going on there.

We are raising money for his medical needs, that are ongoing.

You can also purchase this shirt from Kline’s Designs for $20.

  • Full body Theratog (insurance does not cover this)
  • 2 Wrist Theratogs (insurance does not cover this)
  • Handicap accessible bathroom
  • Daily Assistive Devices
  • Continued Treatment in FL (insurance does not cover this)
  • Mobility Dog
Family, Inspirational Thoughts, Medical

Part 2: Have You Ever Tried to Nail Jello to a Wall?

 

It is *so* easy to praise God when all is good in the world.  When things are running smoothly and all things are moving and grooving in a good flow.

You and your family are sitting around a campfire singing Kumbaya…….

Then, you see your fire starting to go out and it is getting cold outside and you are frantically searching for anything and everything that you can burn to get that groove back.

Before you know it, a bird flies overhead and he pees on your ember.  Your flame is gone and you are sitting there…cold…in the dark.  You think it can’t get much worse but you have eaten that last s’more.  No heat, no light, no food…..doable, sucky, but doable.  Then the monsoon hits and you feel like you will never be out of this space and your fire will never come back.

That is how I have felt in this last year.  Our official clinical dx was made…there is not definitive test you can do, no amount of MRIs, LPs, blood work, X-rays, EEGs….nothing can officially say this is what you have…it is a combination of symptoms and what they equal up too.

Opsoclonus Myoclonus Syndrome was 1 in 10 million….it may be more like 1 in a 100000 now, I’d have to look.  Once this dx took hold, I did TONS of research.  I joined a wonderful online support group and I received encouragement and a wealth of information.  We started high dose steroids, while hospitalized.  We also started our first, of many IVIG treatments.  The IVIG was done monthly.  Closely following coming home (in the hospital for about 12 days), we start Rituximab (a type of chemo).  The total on that was about 4 treatments.  Since those were not working, we moved to add in ACTH.  This is a dose shot that we gave him daily.  It is another type of steroid.  We did this for about 3 mths.  All this did was MAGNIFY his rages, insomnia, and severe OCD tendencies.  My sweet little boy was…………….not there anymore.  He was like a raging animal that constantly stayed in a fight or flight mode.

In that time, my frustration overwhelmed me, so I contacted an OMS specialist in LA.  She answered so many questions and her openness, honesty, forthrightness, and in my face wording helped me so very much.  I also, physically, took Hunter for a second opinion at yet another children’s hospital.  Dr. Lightner was a breath of fresh air, though I did not care for what all she said.  She felt that this was more progressive (she did not see the ocular flutter which, to her ruled out OMS).  She wanted to run all the tests all over again (which it had been a year and we were going to have to do that with his regular neuro anyway, so we allowed that).

All tests came back the same and while he was at the hospital, the ocular flutter reappeared which made her believe that it was OMS (confusing I know).  So, in the end, we felt confident in this “clinical” diagnosis.  She said, in her opinion, she would try the protocol again, but that is something I needed to discuss with our regular neuro, as she was just confirming a diagnosis.

In the medical field, a ZEBRA means a very unlikely diagnostic possibility. It comes from an old saying used in teaching medical students about how to think logically in regard to the differential diagnosis: ‘When you hear hoof beats, think of horses, not zebras.’  Hunter was not a horse, we THOUGHT he was a zebra……

Then, we discovered that he is NOT a zebra….he is an Okapi (incidently my all time favorite animal).  They are incredibly rare.

Image result for okapi

Family, Inspirational Thoughts, Medical

Part 1: A Journey of Healing

I will be posting our story in little mini parts.  In these parts, I’m going to share the songs that have spoken to me, so very much, during this season of my life.  Also, my theme Scripture that does *not* escape me.  Also note, that I will only be talking about this last leg of our journey, as we stepped out of our finite “reasonable” box and stepped into infinite faith.
This is all very hard to explain without sounding like I live on another planet, so just trust that God is good even when we don’t understand, even if this is possibly temporary, even when it sounds impossible.  With Christ, all things are possible.
HOPE….the Lord has added to this post, but here is a taste of what the Lord has been showing me.
Several years ago, my friend shared the story of her daughter’s journey with Lyme disease and how this place…this whack-a-doo treatment and faith saved her daughter’s life.  She tried to explain it to me but I had no clue what she was even talking about, so I listened, asked questions, and rejoiced in her daughter’s healing.  I have mentioned this place to several friends, who struggle with some autoimmune issues, and I just put a bug in their ear and then I give them Les’ number LOL.  Take the middle man out of it.  I praise Jesus every January because that is when Les and her family stepped out on faith and tried something different than regular medicine.
When Hunter woke up from his nap on June 6, 2017, our lives changed forever.  You can read about the end of his journey OMS: The Rogue Zebra Has Been Caught .  Now, there are 3 other parts prior to that, if you want to know our beginning to this 3rd diagnosis.  Our first dx was from a local hospital.  In reality, a chigger should not EVER been seen there, but whatever…they dx’d Hunter with Strep, though he tested negative.  “Give him this antibiotics and he will be fine in 10 days.”
Uhm, did you get your degree from a Cracker Jack Box?
He cannot walk.
We left there and immediately drove to a children’s hospital out of state.  We stayed there for several hours and then we got the second dx.  They said he had Cerebellitis.  It is a common dx when a child presents with the symptoms that he presented with.  The dr said it would run its course (virus type thing) and he should be better in 10 day.
Yep.  That did not sit well with me.
So, we made some calls to a friend who worked for a Neuro, then another friend who has boatloads of experience with Neuros because her daughter has TM…we talked to our parents, my sister (Hunter’s gma)…and then we made the decision to take him to a different children’ hospital and see if that neuro agreed with the first neuro.
We came home, spent the night, and then I got up early with H and headed to another hospital, alone, truly thinking this neuro would agree with the last neuro.  Yep, that didn’t happen.
That was the beginning of our worst nightmare…………
Inspirational Thoughts, Medical

A Breakthrough of Letting Go

Image result for letting go of control

Sometimes I don’t even realize I’m trying to control a situation until a year (or more) has passed and the Lord has not moved.

Then I sit back and I reflect.

I think about all the phone calls, the late nights researching, the bookmarks I’ve saved, the groups I have stalked, the tests I have read and reread…..but….

Where was my Jesus?

I realized:  ~my depression was stronger ~my prayer life had waned ~my mood was somber ~my temper was short ~my resolve was shorter ~my study life was non existent ~my relationships were strained and ~my desire to go to church was void.

On June 17, 2018….I found Jesus again.

I say that knowing that I have always had Jesus.  He has never left me or forsaken me, but today, He imprinted on me and He gently turned my head back around to face Him.  I allowed things to happen that I would generally never allow, out of fear.

Fear has no place anymore.

As I wheeled my son in church, late, past 1044 people (not really but it seemed like a lot when your baby is in a wheelchair), I kept my head down and tried not to make eye contact with anyone.  If I did, I would melt in a puddle of tears.

Then I turned around.

There stood friend #1 and before I knew it friend #2 was there.  I explained a few things and then I had to walk away because I was fixing to lose it and I did not want to release that control and let anyone see me cry.  I hurried back into the sanctuary and we were in the middle of worship.

I couldn’t even open my mouth or my eyes.

I just stood there, with my head down.  I had no thoughts in my head and I was trying to hard not to cry because I was with my children.  When they began another song, I found myself walking to the altar to pray.  My feet were moving without the permission of my mind.  I knelt down….and still there were no words in my head, out of my mouth, I just sat there and absorbed the music.

Mamoo……

As I was praying, I felt a hand and I looked over and Ms. Mamoo was praying over me.  She is the most eccentric woman, I have ever met.  She is stunning with bright blonde and pink hair.  Her legs are to die for and she is about 86 years old.  There is a strength in her.  She kept telling me to “hold on” that healing would happen and I need to hold on.  I felt my body release and I heard these sounds that in thinking back, was me moaning in an animalistic type of way.

The music stopped.

I scurried through a door to gather myself, alone for a moment.  I walked around the corner to check on Hunter and he was beginning to meltdown because he could not pick up a whale snack.  He kept dropping it and shaking.  As I went in to help him, the ladies said there was a man at the door that wanted to speak to me.

I have never seen him before.

He was emotional.  He asked me to bear with him.  He said he saw me wheel my son past him and he felt the Lord leading him to pray over him.  He asked permission to do so, so I I went back in the room and scooped Hunter up.  He asked me to hold Hunter and I was okay with it…strangely, so was Hunter.  He was completely at ease with this man.

His prayer…

What a beautiful prayer of healing this man prayed over my son, in the hallway of the church.  I will never remember all the words he said, but I do remember the stillness of Hunter, the electricity that was in that little huddle and the tears that were shed by me and this man.  I was humbled.

Faith.

Our sermon was on faith and how you have to basically tie a knot at the end of the last thread you are hanging onto and trust that if you slip, you will land on Jesus’ hand.  This sermon was exactly what I’ve been battling with for the month or so.  Jesus has been working on me to have faith, to stand strong, to release control because He knew Hunter before He created the earth.  He knew who would carry him and He knew who was going to raise him.  He knew, whether ordained or allowed, that Hunter would go through this…..He already has the perfect provision in mind if I would just get out of the way and stop controling the situation.

At the end…

I went to get my son.  I placed him in his chair and I wheeled him into the sanctuary.  I saw Richie, our pastor, and before I knew what I was doing, I wheeled him up to the altar.  At that moment…..the Lord gave me another huge chunk of my rainbow.  As I looked up, people from all over the sanctuary, were coming forward to lay hands on Hunter, Bart, and me.  Mamoo anointed him with oil, as she prayed.  There stood men and women, of all ages and children…..all I could hear was a gentle roar of prayers being spoken over our son.  In the midst of that, I felt a hand on my shoulder….it was a familiar hand, with a familiar smell, and a slight tremor….Ms. Jan, through the crowd, touched me.  I never saw her face…I just felt the warmth of her hand and I could hone in on her voice.  Hunter never moved.  He never cried.  He just sat there and took it all in.

God is good, all the time and all the time God is good.

Medical

OKAPI!!!!!!!!!!

Is this not the cutest thing ever? Jenney Gray Kline, who owns KLINE’S DESIGNS reached out to a complete stranger (me) and offered her talents for our family! How cool is that? Please consider buying another shirt (I know….so many, but it is so cute and specifically designed for Hunter). This is an Okapi…..it is rarer than a zebra. It is in the giraffe family and happens to be my favorite animal 🙂

Image result for okapi

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Meet Hunter!

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Hunter is an amazing little boy with a very rare condition called Opsoclonus Myoclonus Syndrome (OMS), also known as Opsoclonus-Myoclonus-Ataxia (OMA), which is a neurological disorder of unknown cause which appears to be the result of an autoimmune process involving the nervous system. It is an extremely rare condition, affecting as few as 1 in 10,000,000 people per year.

We are blessed to announce that we have teamed up with Hunter and his family to design this shirt in order to raise the funds needed for his care. He loves super heroes so we made one just for him!

100% of profits will be donated to Hunter

As he continues to visit specialists as well as needing medical items.

Shirts are $20. All sizes available.

Comment size below to place order or head over to KLINE’S DESIGNS to place your order!

Medical

9 Simple Ways to Prepare For a Hospital Stay

Image result for simple planning

9 Simple Ways to Prepare For a Hospital Stay {With a Medically Fragile Toddler}

~     Buy a nice overnight bag:  preferrably with a zippered bottom and a shoulder strap

I got this WEEKENDER BAG from Modcloth.  I was able to get cashback from Ebates and I found a coupon, online.

~     Have a toiletry case that can be folded up

This is the PRIMROSE HILL BAG I got from Walmart.  In it, I have a toothbrush, toothpaste, trial size dry shampoo (this is a must), face wipes, deodorant, razor, body wash, shampoo, conditioner, hair bands, the baby a toothbrush and toothpaste, a mini first aid kit, fingernail clippers, lotion…just everything I keep at the house, only smaller 😉

~     Electronics Bag

Spare phone cord, earbuds, tablet charger

~     Crossword puzzle/pen

~     2 Extra sets of clothes that will stay in your bag at all times

I have some for me and for Hunter.

~     Spare pair of slippers/fuzzy socks/flip flops

~     Small Backpack

I keep Hunter’s special “hospital” toys, extra pullups and extra wipes.

~     Mini med holder

In here, I have a weeks worth of my regular medication.  I found some SMALL BAGGIES where I keep:  tylenol, ibuprofen, car sickness meds, meclizine (I have Meniere’s Disease), stomach pills (Pepto in pill form), Zofran, children’s tylenol and syringe, Aleve, and tums.  I have them all labeled well and I keep it all together in this small PRIMROSE HILL BAG.

~     Candy

Never miss the candy!

————

I keep my weekender packed with these things, all the time.  That way, when I have to go for a hospital stay, for Hunter, I am ready without stressing out over wait I need to bring or overpacking.

It is a horrible feeling to be alone, heading 4 hrs away for a hospital stay, alone, with a sick toddler.  Having to haul him,  his stroller, a bunch of bags and knowing that I have to pack it all, by myself, in one haul because I cannot leave him alone in the hospital room.

I learned that the hard way.

Now, all I have to grab on go day is my coke, his sippy cup and some snacks, a couple of movies for the trip, my tablet, his tablet, and his blanket because everything else is always packed and sitting in my closet.

Having a medically fragile child and living hours away from the closest children’s hospital is a suckfest….gotta make things as easy as possible to keep my sanity.