The Chair

Cassidy's Cause Therapeutic Riding Academy

The Chair

There was a lady at Horse Therapy who has “the chair.”  My friend, Dara, has wanted Hunter to experience “the chair” for a while but has never had the opportunity to do so.  Yesterday, she was there and so was this infamous chair.

I spoke with the lady about it and what it does.  Basically, it targets the bad or sick cells in your body and does little electrical pulses until it is resolved and then moves onto the next spot.  I’m all about holistic treatment.  Within 5 days of an “out of the box” treatment, my son was out of a wheelchair and walking.

Questions

She asked what was wrong with Hunter and I began describing his onset/symptoms/treatments, etc.  With wide eyes, she said, “you know entirely too much about this condition.”  Yes, I do.  I am a leading expert. When you are 1 in 5 million and he is “rarer than the rare 1 in that 5 million,” you tend to gather and retain all the things that are said to you.  I am an expert.

Bring on the Chair

Lori asked if I wanted to sit in the chair to experience the effects of it.  I agreed.  She turned it on and told me to tell her when I felt something.  Uhm, I felt nothing.  She kept turning it up, slowly, because that is protocol.  I asked what it was supposed to feel like because I felt nothing.

She explained that it is a pulsing sensation and that at some point it is going to get uncomfortable.  Okay, well, again, there was nothing.  Eventually, she got it turned all the way up and I could tell that it was pulsating because I could see it in my chest.  She laughed and said I must have a high pain tolerance because she does not even go that high with a horse.

Destination Relaxation

I enjoyed my time in the chair.  It almost felt like a baby kicking but in my back.  The pulses started in the exact places my massage therapist (and chiropractor) tackle. It is the worse parts of my back.  I thought it was pretty cool that it attacked that first. It was incredibly relaxing.

Now it is Hunter’s Turn

Hunter hopped off Linda, the horse, and hopped into the chair.  I was shocked that he even sat in it.  She started off small and then kept turning it up. As I was rubbing his head, trying to get him to lean back, I asked if he felt anything.  He has a resounding NO.

She kept clicking and clicking.  Her eyes kept getting bigger and bigger.  Before long, she had reached my level.  She said that his pain tolerance must be very high and that she does not even go that high on a full grown horse.

Apparently Though

Hunter LOVED the chair.  He sat in it for about 40 minutes.  When I said he needed to get up so we could go and cook supper, he said he wanted to stay there forever.  He was so relaxed when he got up.

The strangest thing happened on the way home, he SLEPT.  He *never* sleeps in the car. He slept the whole way home.  Mindboggling.  Today, he has been hyper and busy and feeling good…then, he took another nap.

I don’t know if this thing is for real or not.  It works on horses and it has worked on other people.  I will, when Lori is at the barn, have Hunter sit in it to get a weekly/biweekly pulsing session done.  Things work overtime and consistently.

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Reflecting on my Kick in the Gut

Reflecting on my Kick in the Gut.  I was speaking to our doctor’s nurse (she is fantastic btw), and we were discussing how we can get the OT/SLP/PT here at the house through home health.  It has been approved through insurance, but we are finding difficulty in anyone who will work with pediatrics.  It has been a bur in my saddle.
No One Will Help
I called our local hospital, and they said they could do it.  Yay.  Then the nurse from our doctor’s office called and said she was facing resistance.  She said that because Hunter is “medically fragile” that they will not see him.  He is not a do therapy and get better kind of kid.  He is a do therapy and maintains his status type of kid.
Dirty Words
I’m surprised I heard anything past “medically fragile.”  I think I did miss a lot because those 2 words, used in a sentence with my son, cut me to the core.  The definition of medically fragile is defined as a chronic physical condition which results in a prolonged. Dependency on medical care for which daily skilled (nursing) intervention is medical.  Maybe I knew that deep down…..but hearing it forces me to come to grips with the diagnosis that my son has.
Kick in the Gut Truth
The longer he is symptomatic, the more chance of him having permanent brain damage because this is a neurological condition.  I sit here and watch him, and I see that he shakes.  That he struggles with walking.  Also, I hear his speech issues, food issues, his eye twitching.  He truly is medically fragile.  There is no cure.  There are massive drugs he has to take to maintain his health, but those drugs have massive side effects that have adverse effects on his health.  It is a double-edged sword.
1 Thess. 5:16-18
This disease is horrible.  It is uncertain.  It is incurable, by man’s standards.  I hate it but I’m reminded of my sweet friends Mr. Cliff and Ms. Jan…..as I was telling them the latest in the saga of our life, at church one morning, Ms. Jan looked at me and said “but Brandi, you have to remember this one thing…..1 Thess. 5:16-18 “Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God’s will for you who belong to Christ Jesus.” *Emphasis is mine*  It does not say “be joyful when things are great, and everyone is behaving and healthy.”  It says to be joyful ALWAYS.  Be thankful in ALL circumstances.
So…what am I thankful for?
He is alive and has an amazing support group.  During his treatment with his misdiagnosis, he got the same nurse.  I am able to keep his birth mom up-to-date.  My family and the support we have received.  Our church family and prayer warriors.  My kids who see a need and meet it.  I guess There is so much to be thankful for, even on the bad days.

Mourning a Loss a Year Later

**Warning:  This post may contain triggers.  Mourning a Loss a Year Later.  Please, if you are struggling with your thoughts, if you or someone you know suffers from mental illness…stop reading.  Jeni, that means you.  Please know that I say this because I love you.  I do not take suicide, suicidal thoughts, mental illness, cutting, or anything else like that lightly.  It is not funny and it should not be ignored.**

Call 1-800-273-8255
Available 24 hours everyday

Backtracking

I had to get 2 wisdom teeth pulled out the other day.  For some reason, I have a horrible fear of the dentist.  Today was no different.  Luckily, I went in praying and having people pray for me.  I slathered on my “Joy” blend of essential oil.  Frankly, I smelled the joint up.

As the dentist came in, he was sporting a tie-dyed scrub cap and his eyes were smiling.  I quickly informed him that I would rather be getting a pap smear or birthing a child without drugs than be in this chair.

He laughed.  I didn’t.  Honestly, I was dead serious.  As he was numbing my mouth, I closed my eyes and begin wringing my feet the way some people wring their hands.  I had already kicked my shoes off because barefoot is the way I am 98% of my time.

Luckily, I felt NOTHING.  I actually did feel something, but as soon as I said “I feel that,” he stopped and numbed me up more.  It took 5 minutes and I was done.  I left that office on cloud nine and drooling.

Then the numbing medicine wore off and it hurt.  One tooth hurt, the other didn’t but it was no fun.  I came home, took my meds, and went home.  My friend was here, watching the kids and she gave me the go-ahead to just go upstairs.  I did just that.

The Next Day

Sadly, I wasn’t much better.  My jaw ached so badly.  I had a migraine and life just was not being sweet to me.  So thankful that my #2 kid was here to handle the kids and they just let me sleep.

Big Daddy handled supper and the kids did their chores.  If something went wrong, no one told me.  They all just handled it like a boss.  One thing I can say about pain meds is that I know that I would be hard pressed to be an addict.

Now, I do have an addictive personality but pain meds make me A) meaner than a snake B) they don’t really help C) they make my stomach hurt D) I can’t sleep E) I cry…over anything and everything.

Those are not good combinations.

Doing My Thing

I was on edge.  Probably more than I should be because I just simply didn’t feel well.  To take my mind off of my face, I decided to serve another family.  One thing I love to do is cook.  I love to cook for others and be the hands and feet of Jesus during times where someone may not feel like cooking.

A young couple at church just welcomed their fourth blessing.  Now, I didn’t know this family, but they are new to the church and community.  I wanted to serve them, so I did.  There was a plan and I executed it.  However, I did have Big Daddy drive me because I wanted the company and someone to carry the food.

It was a blessed moment to see this sweet family.

On the Way Home

This family lived close to where Big Daddy and I lived for 12 years.  We drove backroads and then decided to go and drive by our old house.  We reveled at the changes in the area, yet the sameness that we remember.  Many of our “neighbors” have moved on, but the core people were still there.

In getting back to our house, we had to travel a road that I did not enjoy traveling.  On one hand, I had a friend that lived close, but she had recently moved.  On the other hand, I had lost a friend on that road due to the choice of suicide.
As we drew closer to these 2 homes, that are extremely close together, I began having flashes.  There were flashes, images, words, thoughts, feelings…all encompassing my brain and body.  I could feel myself getting warm and I knew that I was fixing to jump in the great abyss.

Going Down the Hole

For the next day and several days after that, I could not function.  I did not get out of bed much.  My husband found me sitting on my closet floor, having a breakdown.  I simply could not get some things out of my mind.  Then, the “What If” syndrome started.  I know that I scare him when I get like that, but I could not stop the flood that was coming.

He would come to sit on the bed, hug me and ask me what he could do to help.  I just would say that I didn’t know.  Nothing could erase those things and I was not okay.  It has been almost a year since that happened.

A Sweet Release

On that following Sunday night, after days of struggling, I finally made a phone call.  I called my friend’s mom.  She is struggling and I cannot imagine the day in and day out of what all she goes through.  Her mind, her heart, her emotions…yet I called.  I thought I could keep it together.

Then, she said “hello.”

Once she said “hello,” I was done.  I know I scared her because I could not form a word.  My cry was so guttural and animalistic.  She kept asking me what was wrong and all I could say is I can’t get her eyes out of my head.

We cried together.  Mainly, she just listened to me cry.  She said that I have never mourned this loss.  I went straight into “how can I help” mode.  A year later, I am mourning and I am mourning hard.

What Makes Me Smile

She asked me a question.  “What memories do you have about LA that makes you smile?”  Through my tears, I said “bats and boxed hair dye.”  At that moment, my friend BURST out laughing through her tears.  I started laughing and I recounted the story of the night she tried to drown me while coloring my hair.  How Big Daddy told her she could NEVER come over and color my hair again (this happened often).  Then, as she was leaving my house, at midnight, the bats dive-bombed her hair.

We were chatting under the security light.  She had bleach blonde hair.  The bats came swooping out of no where.  It was the funniest scene in the history of ever.  Her screaming swatting bats and my doubled over laughing with maroon hair.

The Next Day

I ordered a small stuffed bat.  When it came in, I put it in my curio cabinet.  Around its neck, I have the necklace that my friend had made for me.  I have wrapped that necklace around the bats neck. This simple act creates calmness in me and peace.  I will miss her everyday, but I know that she knows Jesus because I was there when she asked Him into her heart.  She is with Him and one day I will see her again.

Mourning a Loss a Year Later

 

Reflecting on 3 Month Post Diagnosis Stuff

Reflecting on 3 Month Post Diagnosis Stuff.  This was written back in September 2017.  It has not been the easiest time, but we are Going the Extra Mile.  We spent about 2 weeks, at onset, at Kosair’s Children’s Hospital (now Norton’s Children’s Hospital). During those 2 weeks, he had 8 high dose steroids treatments and 1 high dose IVIg treatment.  Once we were released, we went back a month later, and we got the first Rituximab treatment.  In 2 weeks, we went back to get the next dose of Rituximab.  We will go back in January to get the 3rd dose.
Round 2 Rituximab
When 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.
Trying to Understand
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.
Staying Healthy is a Priority
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.  Sadly, 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.  Finally, I 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).
Hospital PTSD
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/manhandled 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.
Going the Extra Mile
Maybe I went overboard….maybe I am coddling him. He is 3, my baby, and he did not ask for any of this to happen.  At this point, the child will get whatever he needs to help him through this process.
What the Meds Do When they are Needed
The steroids were to get the inflammation down.  The IVIg is immunotherapy, and it replaces the good stuff in his body.  Rituximab is a type of chemo treatment that specifically kills off the B antibodies that are confused and attacking his brain.  The first dose killed off the majority of them.  The second dose killed off the baby ones.  We were hoping remission would come after that second dose, but sadly, it has not.
Not Much Change
Hunter still walks around like a drunkard, basically.  He walks with his feet out, like a duck to steady himself.  Stairs are still a challenge.  Mornings and after naps are still filled with uncertainty as to how he will be.  He is more tremulous during those times and when he is doing something that has focused movements with his hands (i.e., holding a fork/spoon, pencil, coloring, etc.).
Rages
He is still highly emotional.  I know that he is 3, but it is almost like have 100 kids that are 3, at the same time.  It is exhausting.  He either has hypersomnia or insomnia; eats well or does not eat well; walking or not walking well. There is not an in between. His eye is still turned in, and they still twitch….all the time.  It is so weird.
Treatments
We start monthly IVIg treatments next month.  Our prayer is that we can get them through home health so I do not have to make that drive and sit in that itty bitty room for 8 hours.  We would like to get a mobility service dog for him.  Also, we still need to raise money to redo our downstairs bathroom.  This will make it more accommodating to him when/if the need arises for constant use with his walker.
I do not know what the future holds, but I do know the One who holds the future in His mighty hands, and I will choose to trust and obey.  Blessings.

Roast Recipe

Roast Recipe

Roast

Chuck roast (now, I used 2 cause I have 5 billion children, but I will tell you what I will do with it at the end of this post!)

Seasoning mix

2 packets Lipton onion soup mix

Worcestershire Sauce

1 can cream of mushroom soup

Water

Directions

I use a HUGE pan, with a lid.  You could also put this in a crockpot.  I would not, however, use an Instant pot.  For some reason, when I do a roast in the Instant pot makes the roast tough.

Also, we buy our meat in bulk once a year.  So, all my meat is frozen and I do not thaw it beforehand. All that being said, put your roast in your roasting pan.  I think I added about 3 c. water.

On top of each roast, sprinkle seasoning mix and the Lipton onion soup mix.  Then, I take the can of cream of mushroom soup and I smear it all over both roasts.

Next, I douse the roasts with Worcestershire sauce.  Cover the roasts and slow cook at 250 all day long.

After a few hours, I did check it to make sure there was enough water.  I kicked the oven up to 350 for about 45 minutes and then turned it back down.

This meat was PERFECT.

Now What

Yes, I do have a lot of kids BUT they also eat a lot, that is one reason I make 2 roasts.  The other reason is, to refreeze.

I get 2 gallon size bags and put equal amounts in each baggie.  Squeeze out all the air and freeze.

I will use this for 2 dinners, next week (saving money).  One dinner will be beef and broccoli stir fry.  I can add some water chestnuts, soy sauce, cauliflower rice, and regular rice.  Mix it with steamed broccoli.

The next meal I will make is vegetable beef soup.  Add some tomato juice, marjoram, basil, oregano, seasoning, diced tomatoes, other vegetables, and potatoes.

Reflecting on The Rogue Zebra That Has Been Caught

Reflecting on The Rogue Zebra That Has Been Caught

 

Reflecting on The Rogue Zebra That Has Been Caught.  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, and my sister arranged for her friends to bring us food and snacks.   My niece came visited, gave me breaks, brought food and toys.  Bug, 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 BUT we wanted a diagnosis.

We wanted answers to so many questions.
  • Why was he shaking so violently?
  • His eyes twitching all over, why?
  • Why is he sleeping so much/not sleeping at all?
  • Walking, why can’t he?
  • Why did he scream when I stood him up?
  • Is he in pain?
  • Why couldn’t he sit up?
  • He leans to the left, so bad, that I had to barricade him in, why?
  • Why couldn’t he chew/swallow?
Let’s Make Our Legs Work

I got him on the floor and we went for our daily “let’s make our legs work” walk around the nurse’s station.  While we were walking, we saw Dr. Sweeney and his team pow-wowing 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 how he was progressing or regressing.

Stopping to Say Hi

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.

His Diagnosis

Dr. Sweeney and his crew came up and I told him of his regressions. 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 confident 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 was diagnosed with Opsoclonus Myoclonus Syndrome or Dancing Eyes-Dancing Feet Syndrome. It is INCREDIBLY rare, about 1 in 5 million.  There is not enough known about it to have a cure, so this is something he will have for the rest of his life.

More Tests

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.  For more on this post, please go to Spotting the Zebra post.

Reflecting on Spotting the Zebra

Reflecting on Spotting the Zebra

Reflecting on Spotting the Zebra.  Dr. Ehert has been so good to us.  So thorough and she even fielded questions from my sister, Hunter’s grandma. She really wanted us to be discharged to Frazier Rehab, across the street, for an indefinite amount of time.

I just want to go home…even for just a night.

Realize, I needed to see my kids, my kids needed to see me and Hunter.  I needed my shower, my bed…just for a few hours.  We had declined the offer to go to Frazier and I set up Speech (he had lost some of his speech), Occupational therapy, and physical therapy.  If the doctors were not satisfied with his progress, then we would go.

The Hospitalist said that there were really no more tests to run and that we could go home because A) they had no clue what he had B) there were literally no more tests to run C) I begged.  So, without a diagnosis…..we hustled and got out of that hospital.  We drove for about 3 hrs and then my phone rang. It was Dr. Ehert.  She said that we left without seeing her.  I explained that we saw Dr. Bhalla (her fellow) and that she cleared us to go.

Then….there was a pause

She asked me how far out of Louisville we were.  I told her that I was about 3 hrs from there and a 1/2 hour from home.  She explained to me, so gingerly, that one of his test (1 of about 200) came back positive and that we needed to turn around and get back up there to start steroids.  I asked her how urgent it was and if I could just go home for a bit and she was hesitant.

She said the sooner they start it, the sooner he could get better.  The treatment was to last for 5 days.  She never mentioned a diagnosis but there was a definite concern in her voice.  I told her that I was going home.  There were things I needed to do like getting a shower, seeing my kids, and sleeping in my own bed. In the end, I would be happy to leave in the morning and as long as his life was not in danger.  That is what I was going to do.  I had to mentally prepare myself to be up there for that long, again.

We got home and it was sweet.

He was so excited to see everyone and everyone was excited to see him.  I jumped in the shower and blew off all that nasty hospital funk.  It was glorious.  I slept so well that night.  About 9 am the next morning, we headed out again.  I felt more prepared.  I knew what to pack and was mentally ready.  We got up there and we were able to bypass the ER and go to quick admitting.  They were expecting us.  We met up with the beloved IV team again and we got an IV started for him and for Superman 🙂  They told me that they were going to give him high doses of steroids for the next 5 days.

Steroids are supposed to make you eat and make you a bit grouchy…I could not get this child to eat anything.  He wouldn’t even eat a cookie.  He did sleep some but it was restless.  After 3 doses of steroids, he was able to stand on his own and maybe take a step or two.  His tremors lessened.  His voice was not as shaky, but his eyes were everywhere!

Phone Call from the Beach

Early the next morning, at 1 am, I had finally shut my eyes for a moment and in comes the nurse.  She said that I had a phone call.  My thoughts are “who on earth is calling me, on a nurses cellphone, at 1 am in the morning.”  It was Dr. Puri.  He is a pediatric neurologist and he was calling me from Myrtle Beach.  I asked him why he was calling me while he was on vacation and he said that he wanted to ease my nerves.

He is a phenomenal doctor.  I have been told that he is well loved, well educated, and he has seen some bizarre things.  There was an assurance that there was no worry of childhood MS, which is what I thought he might have because of his symptoms.  He said because no lesions were found, anywhere.  That it is highly unlikely that he has this.  He said he believed it to be another autoimmune disease and he assured me that they, as a team, would figure it out.

New Neuro

In comes Dr. Sweeney.  I came close to dismissing him because he looked the age of my son, I thought that he was a youth volunteer.  He said that the team had assembled and discussed our case.  They wanted to run more tests but felt pretty confident in the diagnosis.  He basically kicked every other doctor off the case because this was strictly a neuro case and there was no need for a bunch of Drs telling me their opinions and interrupting our day when they didn’t need too.

We did another MRI of his brain and spine (with contrast) and another CT scan of his chest, abdomen, and pelvic region. They knew what they were looking for.  We did a follow-up urine test and they “attempted” to draw blood while he was asleep…6 sticks later, they still could not get enough blood.  I put my foot down, at that point and told them that if ANY IVs or blood draws were necessary…ONLY the IV team would do this for me.

All Tests Were Normal

Once all these tests came back (normal, I might add)…Dr. Sweeney stopped the steroids (he had had 8 doses of it) and he started him on IVIg (immunotherapy) for about 6 1/2 hrs.  He said when that was finished we could go home.  There was nothing else for them to do or any more tests, at the moment, that they could do.  I could do the same thing here as they could there.

They did want me to take him to Frazier for a couple of weeks.  I explained that we already had therapy and equipment in place and they were satisfied with that, for now.  We would readdress it when we came back for our follow up appointment.  As of now, all tests were clear except for high pressure with the spinal tap and that test was positive for Oligoclonal Banding.

Spotting the Zebra

Dr. Sweeney captured the rogue zebra in a third diagnosis but changed his mind to a fourth diagnosis.  That fourth diagnosis was Ataxia Telangiectasia Like Disorder.  Then, we learned a year later, that he DID NOT have ATLD1.  So, the fifth diagnosis was back to the third diagnosis of Opsoclonus Myoclonus Syndrome.

As I am reflecting on spotting that rogue zebra, are you confused yet?  I am.

Related Posts:

Rogue Zebra has been Caught

OMS Life Foundation

Reuben Schwartz Amish Iridologist

Reuben Schwartz Amish Iridologist

Reuben Schwartz

Here is a bit more information on Reuben Schwartz Amish Iridologist.  I had heard of him a long time ago.  In the busyness of life, I just let the knowledge slip my mind until my brother brought him back up.

This time, I did my homework.  I did some research and found great things about this man.  However, getting an appointment is not simple and takes time.  Patience is definitely a virtue.

At the point we saw Mr. Reuben, we had been on the Opsoclonus Myoclonus Syndrome journey for almost a year.  Sadly, he had been really bad a few months earlier.  He had been in a wheelchair from about April 2018 to June 2018.  That June, we had been to our first naturopathic doctor.

Eye opening.

I will post more on this treatment in another post.  So, by the time we got to Mr. Reuben, he was out of the wheelchair but still tremulous.  Frankly, I was curious.  The things I read about him were pretty good.

My Experience

I will not write too much about Hunter’s because he is not old enough to tell me his thoughts.  However, I will say that 2 people, thousands of miles apart, one massively educated and wonderful…the other not educated and wonderful…said the same thing.

Getting an Appointment

In order to get an appointment, I wrote him a letter.  This is the only way to get an appointment and assure you can get in to actually see him.  You can “show up” but those that have appointments get first priority.  If you show up, you take the risk of not being seen.  He is a busy busy man.

If you are interested in getting an appointment, you can email me with questions about my experience.  My email is thebarefoothomeschooler@gmail.com.  Also, you can write him (this is public record) and request an appointment.

Address

Reuben Schwartz

1205 Radure Rd.

Hestand, KY  42151

Head’s Up

My GPS took me on down the driveway to the house at the end of the road.  That is his son, Abraham’s house.  Abraham is one of Reuben’s sons.  He is sweet…his family is pretty sweet, as well.  He told me that Reuben’s place is the first place, on the left.  It has a full-length front porch and the building is fairly new (compared to the other houses).  There is little to no cell signal once you get into Amish country.

Walking In

Pulling up and parking in the grass was my first moment to soak it all up.  We got out and there was a couple with several children sitting on the full-length front porch.  They have been going to Reuben for years, even before children.  Now, they come every year for a quick checkup.

We walked in and there were several people there, waiting.  See, you can just “show up” but first priority goes to those with appointments.  He has a predetermined amount of people he sees within a day, so keep that in mind.

Hunter explored and I took it all in while filling out Hunter’s paperwork.  I had no intention of him looking into my eyes.  Mr. Reuben came to the door and he is a thin, lanky man with a beautiful white beard.  His eyes were this piercing blue.  He smelled of Melaleuca and love.

Heading to the Office

I asked him how he came to do this.  He laughed and said that it had been a part of their community for as long as he could remember.  Also, he said that, when he was younger, he thought it was witchcraft and that he stayed far far away from it.

As he grew older and continuing to see this miraculous healing (he loves Jesus, by the way), he became intrigued and began studying the practice of Iridology.  Once he realized that history of it and the reality of how it was helping others, he dove right in.

Looking Into His Eyes

Now, he knew of Hunter’s diagnosis, though he had never heard of it.  Trying telling an Amish man to look up your Youtube channel.  LOL It was like a blank stare came across his face and you could hear crickets chirping.  He politely said he had never heard of the You Tube.  I laughed.  He laughed.

Once he looked into Hunter’s eyes, he said that he was riddled with parasites.  Realize I had just been to St. Augustine and the parasites were identified at that session, as well.  He said that he could see parasite scarring (where some had died) and then he saw active ones.

He smiled and said that my son was not going to die…we were going to get rid of the parasites.  With the herbs/supplements we got from him and the high/low-frequency acupuncture and bio-impedance we got from SonRidge, he will quit shaking.  I was in awe that both man, brilliant in their own rights, said the same thing.  Amazing.

Then It was Me

Once again, I took the bull by the … well … nevermind, I asked him to look into my eyes.  All he knew was my name.  The first thing he said was “when did you get your uterus out?”  I told him a year ago.  He said, “well, you still have your ovaries, right?”  I asked how he knew that and he simply said he sees it in my eyes.

Then, he put his crucible and little utility flashlight down and backed away from me.  He stared at me for a minute and he paused.  He said “uhm, ma’am, your, uhm, your ovaries…well, they are angry.  Do you have trouble sleeping, trouble with your moods, etc.?”  I said that I did and he told me he would fix that.

He then asked how long I have had dizzy spells (diagnosed with Meniere’s at 19 yr old), how long I had had high blood pressure, how my stress level was.  I mean he nailed me.  Everything.  I was blown away.

Herbs and Supplements

They are not cheap, but they last for a long while.  What they do not sell at the office, there is a little shop at the end of that road.  I can’t remember the name, but you pass it as you go up to Reuben’s.  They have the rest of what you might need.  Unlike Reuben’s, they do take a credit card and are super friendly.  They will tell you what you need and what you really don’t need or give you cheaper options.

Payment

Mr. Reuben is FREE.  He does have a donation box, in his office, if you feel led to donate any money for his time.  Also, herbs and supplements are not free.  They do not take cards, so bring cash, if you should choose to buy anything.

If you go back, you can take your empty bottle and they can fill that bottle back up.  They are big on recycling and the environment.  They also have some veggies/popcorn/jam and other things that they grow and sell in the office.

Disclosure

**I am in no way a doctor.  All I know about Iridology I have read/asked.  I am not telling you to go the route that we went with naturopathic doctors.  Also, I am not telling you to disregard your regular doctor, his advice, or stop taking your medications.  This is 100% my experience in my own body.  Also, it is my personal experience and knowledge with my son and his condition.  We still seek the care of our regular PCP and Neurologist.  Please seek out your doctor’s opinion, research yourself, and make an informed decision.  All opinions are my own.**

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Reflecting on the Rogue Zebra that is on the Loose or is It

Reflecting on the Rogue Zebra that is on the Loose

 

Reflecting on the Rogue Zebra that is on the Loose or is it?  We got to the Norton’s Children’s Hospital ER, and I realized that the calmness I once felt was now moving into the “they are paying a whole lot of attention to us” moment and “oh crap.”  Nurses were moving quickly.  We were seeing attendings and not interns or residents.  My mama’s gut was screaming, but my outer shell was trying to convince my inner shell that things were okay and they were just overly attentive.
All Eyes Were On Hunter
Without much of a blink, I had the ER attending, the neuro attending, the peds attending and there was one other one, but I cannot think of who that person was.  They got him in a gown, I blinked, and the next thing I knew they were putting in an IV, drawing vials upon vials of blood, testing his urine.  It all happened so fast.
Explaining the Last 2 ER Visits
When I talked to the attendings, I had explained that we had just been to Vandy and what they had said.  I told them that I may be overly cautious, but it seemed Hunter was getting worse.  All I wanted was two doctors, two different hospitals, two different states telling me the same thing.  Once that was done, I would be good to go.  The last thing I wanted to do was to stay.
Dancing Eyes
I blinked again and when I looked up…Hunter’s eyes were dancing all over his head.  It reminded me of looking at one of those reptiles that had a third eyelid.  Quickly, I got up and hung my head out the door for the attending.  I stood, where my face was not visible to Hunter.  Before that moment, I was cool as a cucumber this whole time.  Sadly, when that third eyelid thing had to be fixed….that scared me.  That’s when things started moving a bit faster.
Not a Normal Mama
I am not the type of mama that is always at the hospital or doctors office for every single snot rocket, complaint, bent finger or toe…or even blood gushing.  I just do not subscribe to that in my life.  If mama is calm… the kid is calm….then things can get done and assessed.  I told these people that.  I apologized for even taking their time because I was *sure* that everyone was going to agree.
They didn’t agree.
Not even in the slightest.
A 6 Day Stay
My, previously healthy, 3-year-old was poked, prodded, sedated, infused…..I was alone (Big Daddy was home with the other kiddos), with a 3-year-old, surrounded by a bunch of doctors, residents, interns, students, and nurses.  There was not one person who would give me a straight answer.  One of the doctors, I finally cornered, and I told her that I’m a nice person.  I tolerate a lot.  I am also a forthright person, and I do not beat around the bush.  The one thing that can get a bee up my drawers is when people are dishonest or dancing around things for me.
I understand that they do not have all the test results in.  I know that they do not know, for sure, what this is.  What they do know is what tests they are running and why they are running them and what they are ruling out.  That is the stuff I want to know.  I will not lose my cool.  There will not be a time when I will panic, faint, cry, or scream.  My job is to be a student of whatever is going on.
Student Doctor
One sweet little student doctor, who looked like the age of my son….he stepped out of his box.  He got down on Hunter’s level.  This sweet man played with him, connected with him, and he was genuinely concerned about him and about me. There were days when he would stop by and ask random questions because he was going home and researching.  Out of his graciousness, he made me a list of all the tests that were done.  Which tests were pending and which had results (and he gave me the results).
Also, he took the extra time to write down what disease each test was for and what was ruled out and what they were looking for.  That list became gold to me.  Every time a nurse came in, she would check to see if a specific result had come in.  This is what I needed.  This calmed my soul, and I felt a little bit empowered and in the loop, so to speak.
The Hospitalist
There was another doctor, she is a pediatrician and was the hospitalist for the week.  She slammed me between the eyes.  This doctor said that he would not get better.  Her guess was that it was an autoimmune disease.  They could not pin it down, but the fact that every single day, he was getting worse and much weaker.  She said that I needed to see the gravity of the situation.  I need to make adjustments, at home.  I needed to set up therapy.  They really wanted him in Frazier Rehab for an indefinite amount of time.  I was going to be the one who had to feed him, we had to get him fitted for a wheelchair.  This was our life, and I needed to prepare myself.
Time for a Meltdown
I believe after that conversation was the first time I truly had a meltdown.  Amazingly enough, I did not do so in front of all the doctors.  I waited until they left.  Before my moment, I got my son watching a movie.  Then, I stepped into the bathroom and called my sister, Hunter’s grandma.  That is when I lost my composure.  I could hear Hunter in the other room sweetly saying “mama don’t cry.  Come out of the bathroom and don’t cry.”  I came out….washed my face….and we watched Cars for the thousandth time.
Choosing Joy
I purposed not to let this whatever dictate his life or mine.  Adjustments…fine.  I can do that.  Therapy?  Fine…I can do that.  When the doctors came to do rounds again…there were about 12….they were timid around me.  They would not look me in the eye.  I guess they thought I was going breakdown.  There was a moment…my moment was over.  I told them that even in times like this, I choose joy,  According to God, this would not defeat us.  This was just a part of our story.
I explained that these doctors will see something similar to this, in their future.  That when they do, they will remember Hunter.  Hopefully, they will know what tests to run and what to look for.  Also to realize that God will be glorified.  The tone in the room changed….they began to tell me they were praying for us and encouraging me saying that God can still do miracles.
Next, we meet our Neurologist team.  The rogue zebra is in their sight.

Simple Ham Pockets Recipe

Simple Ham Pockets Recipe

This is a Simple Ham Pockets Recipe that is so easy for a busy night.  Sadly, the week I made this was jam-packed with doctors appointments and busyness.  Week’s like this, I struggle to keep my eyes above the waves.  In my moments of stillness, I sent off 5 cards to people to tell them I love them.  Also, I whipped this up because I just do not have the energy to do anything else.

Simple Ham Pockets Recipe

~Ham (I used about 1/2 of a pre-sliced KY Legend ham)

~Minced Onions

~Seasoning mix

~Cream cheese

~Cheddar Cheese

~4 Buttery Crescent rolls

Directions:

In a food processor, I put in all ingredients except the crescent rolls LOL.  I blended that well until ham and the cream cheese was mixed.

Transfer all of that to a bowl.  Add more cheddar, if you want.  I did, cause I like cheddar.

Roll out your crescent roll dough.  Place your mixture at the larger end of the dough and roll.

It made 24 stuffed crescent rolls.  There was 2 rolls leftover that I just cooked with the stuffed ones.

Bake on an ungreased cookie sheet at 350 for 12 minutes.

 

Simple Ham Pockets Recipe

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