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

Happy 84th Birthday, Lady

My Lady and Me

My Lady began calling me Ramona as her mind came in and out.  She also referred to herself as Stacy.  We got tickled when she came back around, and I would tell her.  I loved to cook for her, for her birthday.

It overwhelmed her having all my kids in her house, surrounding her table.  She would sit, talk, laugh, and just absorb those crazy moments.  Her eyes would dance and sparkle as she helped my kids with different projects, while I cleaned the kitchen.

She also enjoyed us taking her out to dinner.  She and her boyfriend (Bart) would put me in the backseat, and they would hang out in the front.  They solved the world’s problems.  They loved eating fish, together.

Bart would surprise her and bring her flowers, every once in a while.  She loved him for that.

I miss her laugh.

The thought of her singing, with her beautiful voice, makes my heart rejoice.  Her wisdom is something that I will hold onto forever and a day.  In this picture, she had just turned 80.

She wore my FAVORITE shirt.  Red was my favorite color on her.  She loved the water (as they owned a houseboat for a long time).  This shirt just was the epitome of what she liked and what I loved.

I would love to be sitting in her room, in my green chair and her in her leather chair.  I would love to be at that table again.

There are many times, I sat, in that chair and at that table, with my head in her hands while I cried and she prayed.

I miss hearing her praying over me.  Her guidance.  Her forthrightness.  I miss every single part of her.  Everyone needs a Lady.

Today is her first birthday that she is celebrating with Jesus and her Jerome.

I miss you more today, then I did yesterday.

Until I see you again.

I love your face off.

 

Family, Inspirational Thoughts

Part 4: A New Day, A New Diagnosis

History of Hunter’s Diagnosis

It is a new day and a new diagnosis for my fella.  Dancing around truth (aka no one knows anything LOL).  This is a small snippet of Hunter’s diagnosis’ and what all he has been through to get to where he is.  So many months, so many procedures, so much medicine…..and now we have yet another new diagnosis.

June 6, 2017…..Life changed while he was sleeping. Hospital 1:  Lots of blood tests and urine tests.  Diagnosis 1:  Strep.  Antibiotic.  Go home.  He will be better in 10 days.

June 7, 2017…..Hospital 2:  MRI, blood test, urine test.  Diagnosis 2:  Cerebellitis.  Viral.  He will be better in 2 weeks.

June 8, 2017……..Hospital 3:  MRI, Xrays, Ultrasounds, Lumbar Puncture, EEG, blood test, urine test.  No clue.  Degenerative Neurological Disorder.  No clue as to what to do.

June 14, 2017…..Diagnosis 3:  Opsoclonus Myoclonus Syndrome.  High dose steroids, first dose of IVIG.

1 week later…chemo.

2 weeks after that…chemo

Monthly IVIG from then until April 2018.

Chemo 2 x after that.

ACTH (high dose steroid shots) from Dec 28, 2017-Feb 27, 2018)

More blood work.

April 2018….Hospital 4 to confirm dx of Hospital 3.  Fearing neurological degenerative process.

A week later…admission to hospital 4 for repeat of tests done a year ago.  MRI, Xrays, Ultrasound, Lumbar puncture.

Final dx from Hospital 4:  OMS

May 2018….Hospital 3 neuro says there is a good chance it is not OMS, but Spinocerebellar Ataxia.  Degenerative.  Neurological.  No cure.  No treatment.  It is genetic.  bloodwork.  He had not been walking up to that point.

A New Day

June 2018….unconventional treatment.

5 days later….he is walking on the beach.

July 2018….not SCA, final diagnosis:  1 copy of MRE11A mutation on chromosome 11.  Ataxia Telangictasia Like Disorder.

Then we have blah blah blah……..

He has been through so much.  Physically, mentally, emotionally.  He is exhausted.  We are exhausted.

I’m so sick of man and him telling me what is this, what is that, they don’t even know.  These drs have never seen this.

The things I know FOR SURE:

1.  He does not have Friedrich’s Ataxia.

2.  He does have a mutation on his MRE11A chromosome 11, which is ATLD.

3.  I cannot get a straight answer from anyone.

4.  We have good days and bad days.

5.  I am an EXPERT on my son and I will NOT waiver for life for the pride of another dr.

6.  He is cute.

7.  Best.  Smile.  Ever.

8.  He is also a turd.

9.  I will not compromise my faith.

10.  God.  Is.  Bigger.

48 Hr EEG

My Iron Man

This book on faith was written by a lovely woman that I knew when I was growing up….I encourage you to read this book.  It is an easy read and her faith, during her trials, is something to behold.

Colla Ro

Giveaway

Giveaway: Steps of Faith DVD

Giveaway: Steps of Faith DVD

First things first……click on the ^^^^Steps of Faith Youtube Clips^^^^ and enjoy 🙂

We, as a family, are always looking at ways of eliminating the secular and moving towards movies that we do not have monitor first.  Nowadays, people put out films, and they can be geared towards children.  What you have to realize, most people do, is that they sneak in something (anything) inappropriate.

Now sad that we are so accustomed to little “slights” of things that we see it as the norm.  A swear word, immodest clothing, intimate scenes, violence…..all in the name of “entertainment.”

We are thrilled to add another family movie to our collection.  This film focuses on faith, purpose, and relationship.  It stars Charles Malik Whitfield, Chrystee Pharris, and Irma P. Hall.

About the Movie

This film is a light-heart dramedy about Faith Houston.  She is an accountant, who is directed by God to move to a small town to work on Hippotherapy farm helping children.  This young lady is mocked by her family since she does not have a rapport with children or animals.  She is also, not, a devout Christian.  Faith decides to follow her heart and move after she encounters several challenges.  She finds herself at the farm, in the horse stalls, shoveling manure.  Faith cracks under pressure and leaves after a child is almost injured.  She begins to question whether or not she heard God’s voice or not.

 

Social Media

Steps of Faith Website

Facebook

Where To Buy

Image result for steps of faith

Cooking

To a Kitchen Near You

Coming Soon Cooking

Coming soon, Brandi cooking, all new recipes.

Due to Hunter’s food allergies, all things related to food has got to be changed to help him.

Hunter has some new diet restrictions, therefore life is changing.  I will be cooking:  Gluten Free, Dairy Free, Egg Free, Garlic Free, Nut Free

This is going to be a lot of trial and error because I know how to cook.  I’m good at cooking things.

Plus, I like to eat.  I do not, however, like to lick trees or eat grass.

I will do whatever it takes to help my boy.

God has led me to a place of peace and knowledge, but this is all new.

Learning how to cook again.

After 30 years, no more butter.

Bacon is teetering on the edge of the pirate plank.

Milk says goodbye.

Cheese is on vacation.

Gluten just said buh bye.

I have made cashew cheese (seems like an oxymoron, yet tastes like paste).

Smoothies have *finally* been mastered.  They comprise of bananas, strawberries, almond milk, ice cubes, peanut butter powder, power greens, and chlorophyll.

Gluten-free pizza with garlic free homemade pizza sauce and vegan cheese.  He loves it.  I, however, barfed in my mouth a bit.

Prayers appreciated.

Details are coming soon.

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.