Posted in Medical, Health, Adoption

Going the Extra Mile

Post includes affiliate links.

This past week…..Hunter had his second round of Rituximab.  His first round was 2 weeks prior and it did not yield the results that we had hoped it would yield.  We did not see Dr. Sweeney (or any doctor for that matter) during that first round.  This time, however, we saw Dr. Sweeney, Dr. Bhalla, and a couple of students or interns….not sure…they did not speak.

I was able to ask many questions to Dr. Sweeney.  I felt like I was heard and he answered in a way that did not make me feel stupid, but in a way that I could understand.  He has a heart for children.  Any single man who knows the theme songs to ALL the disney movies and ALL the characters of each of those movies, is a man who is in tune with his audience of kiddoes.

I understood that we would know if this course of treatment was going to work within the next two weeks.  Hunter still has residual steroids in his system, as well as, IVIg.  In two weeks, though, all of that should be out of his system and all remaining B cells should be killed off by this last Rituximab treatment.  Then….we will either see improvement (aka remission) or we will need to rethink the course of action that we need to take.

In the meantime….we know his immune system is comprised.  To help with that, when we are out in public or around sick people…I went on the hunt for some face masks for children.  I could not find any.  I did get a few adult sized ones from my son’s orthodontist, but nothing that would fit his face.  I finally went to my “go to” place….Amazon.  Oh….I love amazon.  I found what I was looking for and they work perfectly (though he hates them).  CHILD’S FACE MASKS

My next course of action was to help ease his anxiety about going to the hospital.  Thanks to tiny veins and inexperienced nurses….he has been poked/prodded/laid on/man handled until I just about went all Hulk on them.  Then…we met the IV team.  Oh.  My.  Stars.  Let me just tell you….they are all angels sent from heaven.

I found this and let me just tell you….he looks adorable. A friend is going to embroider his name and “OMS Specialist” on it for me. It did not break the bank and it was on prime, so I got free shipping.

Maybe I went overboard….maybe I am coddling him. He is 3. He is my baby. He did not ask for any of this to happen and frankly…..at this point….within reason….the child will get whatever he needs to help him through this process.

Posted in Budgeting, Couponing, Health, Homeschooling, Inspirational Thoughts, Marriage, Medical, My Lady, Once a Month Cooking, Organization, Saving Money, Truth and Honesty

Enough is Enough

Tonight, I had this overwhelming feeling of being suffocated by debt.  I hate that feeling. I hate the fact that I am a slave to money.  That is not how it is supposed to be.  When we moved into this house, about 10 years ago…we had no debt (other than our previous house).  We do not do the whole credit card thing (learned our lesson from that), we didn’t have new furniture…if we did, we paid cash for it.  Our cars were paid for, no student loans…nothing.

Now…..shazaam……we have a van payment, a student loan, an equity loan, another type of loan, a house loan, medical bills, bills from where things have broken and they have to be fixed.  It could be worse.  I know that, but I feel like, right now, this is worse because I know better.  I know what Jesus teaches us and instead of walking that narrow path that He chose for us….we saw the bright shiny-ness of the wider road and we took it.  Now, we are standing on the little strip of dirt between the wide road and the narrow road.  I equate it, in my mind, as those little pieces of dirt between the different lanes of the interstate.  Where it is posted no U turn.  That is where we are standing.  The wide road is so shiny and it is filled with new vehicles, coach bags, sports obligations, vacations, and movies.  The narrow road is not so shiny, but it is being protected, from the elements, by these beautiful weeping willow trees.  It is filled with discipline, being trusted with little, tithing, paying cash, not serving two masters.

I am over it.  I am ready to walk on that narrow road…not sure if Big Daddy is, but I also know he is tired of it too.  This is scary.  It is a hard road.  We’ve walked on that road.  We’ve made sacrifices.  We succeeded.  We can and we will, in the Name of Jesus, succeed again.  It is time to hand over this endeavor and because we are so weak…..we need to lean on Him because He is SO strong.  He is our Strong Tower.

Another issue that we have given lip service too is our health/weight.  We are fat.  We are fat people.  We are not fluffy.  We are not round around the edges.  We are not jolly.  We are fat.  Straight up.  Our health sucks.  We get winded walking up the steps to the bedroom.  Big Daddy can’t hardly walk because of pain.  We have purposed, for years, that the next year will be the year.  It is the magical year we get fit.  We give it a week…we only lose 4 lbs of pee weight and we are done.  We want a double quarter pounder super sized with a coke the size of my face and a side of a double decker death by chocolate cake.

I am over it.  Done.  Just done.  I do not want to give the illusion that we eat crap all the time.  Frankly, I do not buy sweets (now there are other people in my house that do, then eat it all in one sitting). I do drink coke.  I am going to try and cut that down to 1 a day.  We only drink water.  I cook with tons of veggies.  We do not eat much bread or pasta.  We are fruit eaters…..we do not do things badly BUT we are completely inactive and we do not blink if we want to eat out…we eat out. So, we are affecting our health and our finances by poor choices along those wide roads.

I will be documenting our journey of getting out of debt and getting this fat off of us.  You are welcome to follow along.  You can subscribe to my blog >>>>>>>>in this side bar>>>>.  You can also follow me on any social media platform (also on that side bar).  If you have suggestions, by all means, give them too me.  Suggestions on stay at home jobs, how to make some extra money on the side, healthy recipes, or exercises.  Anything.  I am open.

Here’s to having my belly full of ENOUGH.

Onward and upward.

Posted in Adoption, Everyday, Giveaway, Inspirational Thoughts, Medical, My Lady

Nichole Nordeman Review and Giveaway

NICHOLE NORDEMAN “EVERY MILE MATTERED” CD Review & Giveaway

Every Mile Mattered

With life getting in the way of …. well …. life …. it is nice to have a respite of sorts.  Music is my respite.  I’ve been making long long LONG drives to Louisville, more times than not.  My co-pilot is always wanting MORE music.  So, I play more music.  This has been on loop in my van.  When you go through life with a child who has OMS and the uncertainty of things…it is nice to be certain of one thing.

GOD IS GOOD.

He is good ALL the time.  He is good on the days Hunter walks and He is good on the days Hunter cannot walk.  He is good when we are home.  He is good when we are getting chemo.

GOD IS GOOD.

Take some time….enjoy your surroundings….listen to some music.  Let Christ soothe your soul.

I will be drawing a winner for this giveaway on July 26, 2017.  To enter, simply “like” or “comment” on this post or any social media post (you can find links to those on the sidebar to the right).

 SOCIAL – CORNER 

Official website – http://nicholenordeman.com

Buy links at:

ITunes http://capcmg.me/emm?IQid=b 

Spotify http://capcmg.me/emm.sp

Amazon http://capcmg.me/emm.am)

  • You can also PREORDER her new book “SLOW DOWN”, which is due out in August!
  • Please check out her BLOG and be sure and sign up for her newsletter!

 

 

Assets can be found here:  https://www.dropbox.com/sh/9v1j23tn5imqoj9/AACkje8YNZWxOiFVGm-RUClIa?dl=0

Check out Nichole’s blog  http://nicholenordeman.com and sign up for newsletters!

Posted in Essential Oils, Everyday, Health, Organization, Recipes

DIY Essential Oils Cleaners

Carpet Deodorizer

Empty container (I used an empty parmesan container…washed/dried well)

Baking Soda

10-15 drops of essential oil of your choice (I use purify cause it knocks out the smell of boy)

Mix well.  Shake on carpet before you go to bed to absorb the most smell.  Vacuum in the morning.

 

Room Deodorizer (think Febreze)

Spray bottle (I use those little ones from the travel section at walmart)

10-15 drops of essential oil (again, I use purify.  Be cautious of using lemon oil in a plastic bottle…it should really only be put in a glass or metal bottle)

1/4 c. witch hazel

Water

Pour in your witch hazel.  Fill to almost the top with water.  Add essential oil of your choice.  Shake before using.

 

Furniture Cleaner

Spray bottle

10-15 drops essential oil

1/4 c. vinegar

Water

Pour in your vinegar.  Add water to almost the top.  Add essential oils.  Shake before use.

 

Everyday Cleaner

Large spray bottle

Vinegar

Water

20 drops Essential oils (purify, Frankincense, tea tree, pepperment, etc)

Onguard Concentrate (optional but worth it as an added protection for fighting germs)

Pour 1/2 the bottle with vinegar, add a good squirt (about 2 T. Onguard Concentrate), fill up with water and essential oils (if you have a glass bottle you can use lemon).

 

Posted in Essential Oils, Health, Organization, Recipes, Saving Money

Buy TEA TREE OIL Get PURIFY Free!

Tea Tree retails at $25.33 and Purify retails for $24. Get BOTH for $21.14 (this includes shipping and handling.

Tea Tree: gets rid of zits, stops itching of bug bites, repels bugs and mice, helps with ear pain, also good for cleaning house.

Purify: smells good, eliminates odors (I use it in the kids bathrooms and the boys bedroom), it helps.with ear pain, and I use it in my cleaner.

If you are interested….comment below. Please feel free to share.

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Posted in Everyday, Health, Homeschooling, Inspirational Thoughts, Marriage, Medical, My Lady, Once a Month Cooking, Organization, Truth and Honesty

Motivation Monday

This funk has GOT to go….so go it will.  As my Lady always says “pull yourself up and get outta that pit.”  With that being said….I’ve got things to do, places to go, and people to see!

  • Get thank you cards mailed
  • Email G her letter from the kids
  • Make a dentist appt for me and Noah
  • Make dentist appts for the three younger boys
  • Reschedule eye appt.
  • Schedule ACT for Noah
  • Let him drive (insert me vomiting)
  • Pack for Lville and our next drs appt
  • Call dr with update on Hunter
  • Wear makeup
  • Work on Family calendar
  • Pull some homeschooling stuff together
  • Get my letter of intent finished
  • Call OT to cancel appt
  • Reschedule said appt
  • Clean my bedroom
  • Go through and super clean the boys’ rooms cause there is a nasty smell that, frankly, scares me.
  • Call my mama
  • Go see V’s new apartment
  • Set my month’s goals (yes, we are 1/2 way into July but why wait)
  • Start my Bible reading again
  • Clean of and prepare homeschool computers and tablets
  • Read to my baby
  • Finish Freezer cooking
  • Baseball……….Baseball………….and more baseball
  • Go and see my Lady.

This season has sucked.  This year has sucked.  I have not enjoyed any of 2017 and not a whole heck of a lot of enjoyment was had in 2016 LOL.  What holds me together is knowing that known of this surprises Jesus.  He has got all of this.  He has my family.  He knows the beginning from the end.  I just have to buckle in and deal with the twists and turns of the rollercoaster I have been living on for the last year or so.

Time to live.  Time to breathe.  Time for a new season of life.  Time for new beginnings…..this is where Eccl. 3 comes into play.

Ecclesiastes 3 (NLT)

A Time for Everything

For everything there is a season,
    a time for every activity under heaven.
A time to be born and a time to die.
    A time to plant and a time to harvest.
A time to kill and a time to heal.
    A time to tear down and a time to build up.
A time to cry and a time to laugh.
    A time to grieve and a time to dance.
A time to scatter stones and a time to gather stones.
    A time to embrace and a time to turn away.
A time to search and a time to quit searching.
    A time to keep and a time to throw away.
A time to tear and a time to mend.
    A time to be quiet and a time to speak.
A time to love and a time to hate.
    A time for war and a time for peace.

What do people really get for all their hard work? 10 I have seen the burden God has placed on us all. 11 Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end. 12 So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can. 13 And people should eat and drink and enjoy the fruits of their labor, for these are gifts from God.

14 And I know that whatever God does is final. Nothing can be added to it or taken from it. God’s purpose is that people should fear him. 15 What is happening now has happened before, and what will happen in the future has happened before, because God makes the same things happen over and over again.

Posted in Adoption, Health, Inspirational Thoughts, Medical, Truth and Honesty

The Rogue Zebra Has Been Caught and Named

After almost 2 weeks of being in the hospital and having every single test run on him, we were beginning to feel the effects.  I was blessed by so much.  We had great nurses, attentive doctors…my sister arranged for her friends to bring us food and snacks.   My niece came visited, gave me breaks, brought food and toys.  My daughter came up and brought me coke and toys for the baby.  My uncle’s wife came bearing TONS of food and toys for Hunter.  I was blessed.  We continue to be blessed BUT we wanted a diagnosis.  We wanted answers.

Why was he shaking so violently?

Why were his eyes twitching all over?

Why is he sleeping so much/not sleeping at all?

Why couldn’t he walk?

Why did he scream when I stood him up?

Was he in pain?

Why couldn’t he sit up?

Why did he lean to the left, so bad, that I had to barricade him in?

Why couldn’t he chew/swallow?

Why?  Why?  Why?

I got him in the floor and we went for our daily “let’s make our legs work” walks around the nurses station.  While we were walking, we saw Dr. Sweeney and his team powwowing about our case.  I told them all not to talk to him or make direct eye contact because now, he was terrified of all people in scrubs, with white coats, or stethoscopes.  Everyone just kept on talking and while they were talking, they were watching. We had to walk in between the doctors to get through, so it gave everyone a great idea of who he is progressing or regressing.

Hunter noticed Dr. Sweeney and he stopped and spoke to him.  He told him that he liked him and he needed to come and visit him sometime (cue heart melting)….it took him a while to get that sentence out because his voice quivers and he has to really think about his words before they come out of his mouth.  Dr. Sweeney said that he was on the way and by the time we got to our room, he would be right behind us.

So, we headed back to our room.  We made it to the chairs outside of our room because when we approached our door…he began to cry saying he wanted to go home and not go in there anymore.  Broke my heart.  I didn’t know what to tell him.  We parked outside the room and watched the people walk by to help ease him.

Dr. Sweeney and his crew came up and I told him of his regressions and that by the third high dose steroid, he had stopped tremor-ing so badly, but that he is sort of stalled.  He still struggles with walking and his eyes were everywhere.  With his symptoms list, with his regressions, with his body’s response to the steroids…Dr. Sweeney was completely confidant in diagnosing him.  He said that the entire neuro team had gotten together, that morning, and reviewed everything, and collectively, they came up with this diagnosis.

Hunter has Opsoclonus Myoclonus Syndrome or Dancing Eyes Dancing Feet Syndrome. These are a good set of videos as to how Hunter is right now.  It documents the truncal ataxia, the walking, the rages, fine and gross motor skills.  Click HERE to view them all, if you are interested.  It is INCREDIBLY rare.  There is not enough known about it to have a cure, so this is something he will have for the rest of his life.

3 Ways OMS Can Occur

  • It could have been caused by a neuroblastoma (cancer) that his body recognized.  Once it is recognized as being “foreign”, the body produces B-cells that violently attack the cancer so that it is reabsorbed in the body.  Those “aggressive” B-cells do not just die off after the cancer is reabsorbed…it begins attacking the brain at the cerebellum (the part of the brain that controls your body movement) and the frontal lobe (which controls your moods).
  • Idiopathic (meaning it came from a virus)
  • It is a precursor to neuroblastoma (cancer) that can show up with the next few years.

We will be doing MRIs, CT scans, blood work, PET scans and urinalysis often to make sure there is not minute cancer hanging out.  We have had 8 rounds of high dose steroids, 1 round of IVIg immunotherapy, and will have a total of 3 rounds of Rituximab.

So far…we have seen little change.  We have good days and bad days.  We are all adjusting to our new normal and learning life.  I’m thankful to the doctors who heard me and were proactive in finding his diagnosis.  My prayer, of course, is for complete healing.

We are going to try and raise money, at some point, for a therapy dog for him.  We are wanting one for his walker/wheelchair needs and for his anxiety and PTSD in regards to doctors and hospitals.

If you have any questions, or if you child suffers from OMS, do not hesitate to comment here, or you can find me on facebook, instagram, twitter, and pinterest (all links are on the side bar).

Prayers are appreciated.  Fundraiser ideas are appreciated.  Thank you all for hanging in there and keeping up with this little series.  I will post more about this in the future.

 

 

Posted in Everyday, Inspirational Thoughts, Marriage, Medical, My Lady, Truth and Honesty

Happy 83rd Birthday to My Lady

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This is my FAVORITE picture of My Lady.  It was taken 2 years ago after she made a miraculous recovery from her TIAs and her stroke.  She is wearing my absolutely favorite shirt that she owns.  I love her in the color red.

My Lady captured my heart so many years ago.  Her presence is one that demands acknowledgement, in my opinion.  She is tall, regal, beautiful, honest, and she has a smile that lights up any dark spots.  Little did I know that underneath all those worldly attributes was a deep love for her Jesus, her hero (Jerome), her children, her grandchildren, her church, and her community.  She knows everyone and who is related to whom and how to get to, not only their childhood homes, but to every home every person has ever lived in and what job that they held.

She is a master cook of things like Poke Salad, Cornbread, white beans and ham…she knows everything to know about everything in the kitchen and how it relates to health.  She has taught me how to love more deeply.  How to sacrifice without complaining.  How to make decisions when I am confused.  She has held my head in her hands as I have cried over my marriage, my children, and my family.  She prays for me faithfully.  I cannot fully put into words what she means to me and how she has affected me and my life.

I am better for knowing her and being loved by her.  She is my dearest friend, mentor, and confidante.  I wish her circumstances, today, were different than what they are, but I know beyond a shadow of a doubt that she *feels* the love and prayers from everyone around her.

Happy Birthday, my Lady……………