Category: OI Treatment

Vic succeeded at life…


Vic often said “I must be such a disappointment to you.  I have done nothing with my life!”

This morning I read these beautiful words and so wished I could have shared it with Vic.

“This is to have succeeded” posted on June 4, 2013 by Dr Bill http://drbillwooten.com/2013/06/04/this-is-to-have-succeeded

“To laugh often and love much; to win the respect of intelligent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived—this is to have succeeded.” ~ Bessie Anderson Stanley

To laugh often and love much – That Vic did.  She always had a smile on her precious face.  Even when she was in dreadful pain she would try to smile.  When she was in a lot of pain her laugh was shrill.  Pain seldom stopped her from laughing… In 2007 I said to Vic that my life was sad.

“That is terrible Mommy.  Why?”

I felt like hitting my head against a wall!  What did the child think?  In 2007 Vic must have had 18 operations; developed every hospital superbug in the book; developed septicaemia, had a high output fistula; developed Acute Respiratory Distress Syndrome; spend months in ICU and survived having the ventilator turned off… Vic was op TPN (Total Parental Nutrition) for months…she had a massive open wound that we could not keep covered with a colostomy bag.  It was too big and positioned very low down.

“I worry about you every second of the day baby.  I worry whether you have vomited and how much you vomited; I worry whether you have been able to eat anything…  I worry about your wound.  I worry about your pain control….”

“Mommy, that is so sad.  At least once a week the boys and I laugh so much that my tummy hurts from it…”

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Vic in 2007

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Vic loved unconditionally and with every fibre of her body.  She gave everything!  She was a wonderful daughter, mother, friend…She loved her family, her siblings, her friends and her boys.  She LIVED love.

Her last words ever were “I love you Mommy”

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… to win the respect of intelligent persons and the affection of children;  Worldwide, intelligent people, respected and admired Vic for her courage, tenacity…  We called Vic the “baby whisperer”.  Children loved her.  She loved children.  Her only ambition as a toddler and teenager was to be a Mommy.  She loved her sons beyond comprehension…

Vic and her boys.

The Baby Whisperer

…… to earn the approbation of honest citizens and endure the betrayal of false friends; Vic suffered a lot of betrayal in her little life.  People got tired of waiting for her to die.  “Friends” spoke about her “addiction” to pain medication behind her back… They used her illness as a weapon against her when she was at her most vulnerable.  False friends (and loved ones) spoke their “minds” and condemned and judged Vic for choices she made… Because she was ill people thought they could say what they wanted, when they wanted.

….. to appreciate beauty; to find the best in others;  My precious child was so naïve.  She refused to see the bad in people!  The only time she got irritated and miserable was in hospital.  She always found the good in people.  She did not speak badly of people.  When I was angry with someone she would placate me…point out their good points… She knew that if she voiced her own anger it would have driven me over the edge.  Vic taught me unconditional love, forgiveness and tolerance.  Vic brought out the best in me and the most other people.

…..to give of one’s self; Vic was a people pleaser.  She would turn down MY bed!!!!  She made sacrifices for each and every person in her life.  Even in death she worried about other dying people who were less privileged than she was.  I promised her at 2 am on the 16th of November 2012, a mere 2 months and 2 days before she died, that I would start Stepping Stone Hospice!  She kept talking to me about Stepping Stone until she lapsed into a coma.  We started on the 1st of January 2013 and Vic died on the 18th of January.  Our first patient.  Our first death.

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…..to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; Vic left the world a better place.  Her sons are monuments of the person she was; her dream of a Hospice has been realized.

Vic’s monuments…

……to have played and laughed with enthusiasm and sung with exultation;  With the 2010 Soccer World Cup Vic went crazy with enthusiasm; she bought every gimmick that hit the shops; she went of the “soccer train” in her wheelchair, she watched every single soccer game.

 

Vic loving World Cup 2010

……to know even one life has breathed easier because you have lived     Vic’s legacy will live on through her sons and Stepping Stone Hospice.  Long after I have died, people will continue to benefit from Vic’s dreams and goodness.

—this is to have succeeded.”  My angel child – you succeeded!  You succeeded in life and with living.  You made the world a beautiful place filled with goodness and hope.  I am so proud of you.  You lived life to the full.  You made a difference!  You lived a greater and more successful life than most people.  You have put the world to shame.  You are my hero!

 

https://tersiaburger.com/2012/10/16/and-the-winner-is/

https://tersiaburger.com/2012/06/09/9-6-2012/

https://wordpress.com/post/36185300/3015/

http://download.springer.com/static/pdf/71/art%253A10.1186%252Fcc11867.pdf?originUrl=http%3A%2F%2Flink.springer.com%2Farticle%2F10.1186%2Fcc11867&token2=exp=1461937379~acl=%2Fstatic%2Fpdf%2F71%2Fart%25253A10.1186%25252Fcc11867.pdf%3ForiginUrl%3Dhttp%253A%252F%252Flink.springer.com%252Farticle%252F10.1186%252Fcc11867*~hmac=08ff3ff972d6f80826a88836b665cace297a3e6feae8c461089cc821104e11fb

http://www.anaesthesiauk.com/documents/ards.pdf

http://www.nejm.org/doi/pdf/10.1056/nejm200005043421806

 

Watch “Samoan mother with brittle bone disease struggles to look after her baby” on YouTube


This video touched me so deeply at every level.

I was petrified of holding Vic as a baby.  I was even more petrified of anyone else holding my baby.   I had a strict “Look but don’t touch” policy.

“Don’t worry,” people said. “She won’t break.”

Vic’s first known fracture was at the age of 3 weeks.  She sucked her little thumb and fractured it…  By her 3rd birthday Vic had had 41 fractures.

Vic with her right leg in plaster-of-paris

As she grew older she became more careful.  Physiotherapy strengthened her muscle and the stronger muscles protected the bone… By the time she celebrated her 18th birthday, Vic believed that she was invincible.

At the tender age of 21 Vic got married.  When Colin proposed I cried and asked him whether he was aware what life with my OI child would mean…  Of course he did and despite my pleading and sermons about the danger of pregnancy, Vic fell pregnant 6 weeks after the wedding…

Vic embraced her pregnancy as she embraced life.  She survived the pregnancy and the birth.

Jared was six weeks old when Vic started battling to pick him up.  Her little wrists deteriorated to such an extent that she needed surgery to both wrists when he was 7 months old.

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Baby Jared stayed with us for a couple of week whilst Vic recovered.

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It was the first time in my life that I felt useless, hopeless and helpless.  I could do nothing for my child.  I had been relegated from being “the Mother” to being “the mother-in-law”.  My position in the family had changed forever.

When I watched this video I was catapulted back into Vic’s desperate attempt at living a full and normal life.

I remember my blind anger at Vic for falling pregnant…. Unknown number of fractures…Untold pain.

I remember Vicky believed that she was invincible…

I remember KNOWING that “Babies break bones…”

 

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“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell


It is strange the number of Stepping Stone Hospice referrals we have received over the past two weeks.  The patients have controlled pain and symptoms.  Many caregivers are also looking for a dumping ground.

Pain at the end of life is inescapably interwoven with, and often amplified by, multiple levels of emotional and spiritual angst as the inevitability of death looms. Fear, a potent pain magnifier, is the dominant emotion – fear of pain, fear of death, fear of the unknown…..

It is a fact that people at the end of life fear pain even more than they fear death. Sadly, for many dying patients, pain seems like the ultimate torment, and death is its cure. It does not have to be this way, and if you or a loved one is facing death, you have every right to ask that your final days not be consumed by pain.

It is estimated that a maximum of 5% of people who die from terminal illnesses in South Africa have access to adequate palliative care. Even in hospitals, treatment is far from ideal, because doctors and nurses have seldom had training in palliative care and have little idea of what to do with the patients.

Dying patients are often prey to a host of anxieties about the state of their affairs, about the fate of those who will grieve their loss, and about how their behaviour will be seen, and possibly judged, during their final hours. And of course, there are often deep spiritual and religious questions to address. Did my life have meaning? Will my soul survive my body? Am I at peace with myself, my family, and my friends?

Not least of all these concerns, people at the end of life worry about how their pain will be managed. Will they be under medicated and have to ask, or even beg for relief? Will they be over-medicated and lose consciousness during their precious waning days and hours?

They may even be afraid to complain. If they do, will they be seen as whiners or quitters? If they ask for narcotics, will they be judged by their doctors as drug seeking, drug addicts or even cowardly? Or will their medical care be relegated to comfort measures only, while all efforts to cure their illness are suspended?

I read the post of an amazing woman who is suffering from congenital heart failure.  She is in so much pain.  I cried when I read her post.  http://thedrsays.org/2012/11/08/  She replied to a question whether better pain control was possible…..  “there is nothing that will let me participate in life and have relief. so at this point i am going for being lucid over some so-so pain relief. who knows how long before i cave. when the time comes i plan to take advantage of whatever is available to me. just my personal choice right now.”

I thank God that we are able to make a difference!

“Being prepared to die is one of the greatest secrets of living.” George Lincoln Rockwell

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Hero to Zero – one year ago….


 A year ago I posted this… I remember Vic’s screams of pain, the agony on her precious face, the raw fear in her eyes.

Vic basking in the winter sun!

Sunday was an amazing day.  Lorraine, my sister, came to visit and it was great having adult company that discussed more than pain control, bowel movements and vomiting.

Lorraine moved a chair into the sun for Vic.  Vic sat basking in the winter sun sipping lots of coffee.  In true form, Vic on her occasional good day, pulled the dam from under the duck.  She was like a little jack-in-the-box.  Needless to say, I was a spoil sport as I kept begging her to slow down…She did at 15:00 when she literally crashed.

Vic sobbed from pain and my poor sister wasreduced to tears.  She is not used to facing the raw pain of a terminally ill patient who breaks through her pain threshold!

Vic dozed on and off  but kept waking from the pain.  Maybe she took some extra painmeds because she seemed disoriented?  Both Danie and Lorraine expressed their concerns that she seemed to have totally lost track of time and events…

Sunday afternoon the boys came home after spending the weekend with their Dad.  Danie took Jared and Kirsten, (Jared’s girlfriend), to church.  Vic kept trying to get out of bed.  She is so darn stubborn.  She hardly ate any dinner so I gave her anti-nausea tablets and only half her normal pain medication.  She kept getting out of bed.  She would just not stay in bed.

I got so angry with her that I said I would fetch Jared from church.  I needed to remove myself from the situation.  Lorraine said “let me stay with Vic” and I said “No!  Come with me”

Minutes after dropping Kirsten off at home I had a phone call from Danie telling me that Vic had a bad fall…

At home she was lying in a crumpled little heap full of blood and screaming from pain.  Jon-Daniel, bless his heart, was lying next to her on the bed trying to comfort her.  Vic went hysterical when I said I was phoning an ambulance.

“No Mommy, No!!! No ambulance!  No ambulance”

We agreed that we would try to get her to hospital in my car.  Jared half carried her out to the car and then the drama began.  We could not swing her legs into the car!  She was screaming with agony.

I phoned the ambulance service but when they arrived it was obvious that they could not lift her onto the spine board and/or bed.  Eventually we repositioned Vic in the car.  Jared sat behind her and cradled her in his arms.  The ambulance escorted us to the hospital.

At the hospital it took at least 15 minutes before the Trauma and Medics staff decided how to move her into the Trauma Dept.  Vic screamed and screamed with pain!  From 21.30 to 03:00 they x-rayed and scanned Vic.  Most of the x-rays were done in the Trauma section.  Vic’s pupils were very dilated and she was VERY confused so they also ran a CT Scan.

Vic in ER

If I was ever given the opportunity to erase 30 minutes from my life it would be the 30 minutes that it took to move Vic from the ER bed onto the scanning table and back, straightening her legs and forcing her to lie on her back…she screamed and cried “Mommy help me, Mommy!!!  Mommy!!  Mommy help me!!!”

The diagnosis – “impacted fracture of proximal metaphysis of right humerus”.  Vic was admitted to the orthopedic ward and scheduled for surgery today.  The orthopod decided that she is too frail and the risk of the sepsis spreading from the spine and abdomen to the arm,  too great, for him to “pin” the arm.  So Vic’s arm is in a sling and will mend, albeit crooked, eventually on it’s own.  She also has a displaced fracture of the fibula, posterior malleolus, (I believe these are all ankle fractures and Lanie, a physiotherapist says if she had to choose a fracture it would be these fractures), an avusion fracture of the calcaneus and several vertebrae …The spine…well what is to do?  Pain control, bed rest…  Oh, did I mention that the staff had mobilized Vic and she had WALKED on her broken ankle because no-one read the X-ray reports???  I only picked it up when I read the reports this afternoon!!!!  I had to report it to the nursing staff!

I would like to point out that this is in a Private Hospital….can you imagine what happens in Government Hospitals?

I am so angry with myself.  This happened because I got angry with Vic.  I should have stayed with her and not reneged my Caregiving duty.  I should have had been there to bulldoze my stubborn child into remaining in bed.  My temper has caused Vic endless, unbearable pain.  Who knows how long it will take her to recover from this trauma…if she indeed ever recovers from this!  I will never forgive myself for this!

Well with the bad comes the good as well.  We have dreaded Jared’s surgery on Wednesday as we know Vic would have insisted on trying to sit at hospital all day.  Actually, the whole week!  Problem solved.  She is too sore to move… And will more than likely still be in hospital on Wednesday.

The nurses just changed her bed linen and she screamed with pain!  How are we going to take care of Vic at home?  My sister offered to come through but two  qualified nursing staff could not move her without causing major distress.  She also cannot walk and needs to be “bed-cared” for. …bed baths etc, etc, etc

For the first time, ever, I am at a loss.  I am so tired.  I don’t know what to do anymore.

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Mirella cannot do PT…


 

Gr 2 year. Vic's birthday party
Gr 2 year. Vic’s birthday party

I read this lovely post that truly brought a smile to my face. – Thank you Kate!  This post brought a smile to my face and a lovely memory moment to my heart.  I am not going to spoil this funny post by telling you what it is about as I would encourage you to pop over and read it personally.  I cannot do it justice.  http://kateswaffer.com/2013/05/28/tuesday-humour-is-god-a-woman/

For one or other reason this post reminded me of a funny incident when Vic was in Gr 2 at a Convent.

Vic was a very bright little girl and a natural-born leader.  She was an excellent little speller.  Vic was never allowed to participate in any Physical Training lessons at school.  The poor little poppet had to sit and watch her little friends running around, honing their developmental skills through exercise.

It is not clear what the reason was, but one of her little friends decided that she would join Vic on the benches – just watching.  Maybe she forgot her PT clothes at home, maybe she wanted to keep Vic company – who knows?  Mrs Bowling was the PT teacher.  The kids were pretty scared of her… She had a booming voice and intimidating stature.

When I arrived at school that afternoon I was taken aside by Vic’s class teacher, Sr Norbitt.  In a hushed tone she told me that I had to see the principal… There had been an “incident”.  Dear Sr Norbitt’s face had a disapproving scowl on it, but she did assure me that Vicky was not ill or hurt…

I was asked to take a seat in the principal’s office.  I was really very concerned that something serious had happened.

Mother Superior proceeded to tell me that Vic’s little friend had presented a letter to Mrs Bowling excusing her from PT.  She took out the note and I immediately recognised Vic’s baby handwriting…big, perfectly rounded letters saying…

“Dear Mrs Bowling
Mirella can not do PT.  She is sick.  She has X-Rays
Mirella Mommy”

When the girls were confronted with this very obvious forgery, they admitted that Vic had written the letter because she was the best speller in the class and knew about diseases because she was always sick…  Vic wanted to really impress the girls but the only “sick” word she could spell was….. X-Rays!

They were given a week’s detention.

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Vic’s treatment starts


1aWe arrived in Johannesburg on a cold winter’s morning.  My father-in-law picked us up from the station.  My eyes were swollen from the crying.  Vic adored her grandparents so she was delighted to see them.  I felt scared, lost and lonely.

The Monday Vic and I met with Prof Majorkenis.  He explained that her diet had to change and that her “magnetic field was very weak”.  He would endeavour to “Strengthen her magnetic field…”  We would see him five days a week.  Vic’s new diet would exclude all sugar and starch, and she had to take a magnitude of homeopathic drops during the day.

“I make no promise – I try” he said.

The professor’s phone call from France was the first positive thing any medical professional ever uttered since Vic’s diagnosis.  The “Western” doctors clicked their tongues, looked into her eyes, called in another colleague and excitedly said “Just look at her eyes…”  Vic was “displayed” and I subjected her to it because I hoped that somewhere, someone would have a cure!

Vic developed a fear of doctors and nurses.  We could not wear white clothes as she would become hysterical with fear when she saw someone dressed in white!  She associated white clothes with doctors and pain.

I can still fear her cries of fear when the plaster-of-paris had to be removed from her arms and legs as she healed… She never trusted the saw that was used to cut the plaster-of-paris off!

I went off to the library and could find no information that made any sense to me.  I was so scared.  In South Africa in the 70’s homeopathy was considered almost satanic!  Homeopathy was not considered a science!

The treatment started on the same Monday.

On the Tuesday I started my new job!  My father-in-law had to drive me to work and back as my car was still in Bloemfontein.  I would leave work at 4pm, and we would rush home so I could get Vic to the Professor for her treatment.  Vic was in a Nursery School and loved her new teachers and friends.  I was lonely and miserable without my family.

Two weeks after I arrived in Johannesburg Tienie drove up with my car.  It immediately made a huge difference.  I had my independence back but with my independence came the responsibility of “big city” traffic!  I left home at 6am so I would avoid the peak-hour traffic!  It was a mere 25 minute drive to my office, and I only started work at 8am.  I was a little girl in a big city with a little girl suffering from a very rare disease.

Vic and I settled into a routine.  We celebrated her 3rd birthday in a strange, big city hoping and praying that the innocent looking drops and treatment would make a difference.

One afternoon we were sitting in the professor’s waiting room and there was a rather unattractive looking gentleman sitting opposite us.  No matter what I did I could not get Vic to divert her eyes.  The gentleman started winking at her and attempting to engage Vic in a conversation.  With her eyes fixed on his face Vic said in a loud whisper “Mommy, why is this man so ugly?”

I wanted to die of embarrassment.  The gentleman good-naturedly laughed and said “Kids….”!

Vic was just a normal little girl with a debilitating disease.

magnetic

MAGNETIC RESONANCE THERAPY

Magnetic Resonance Therapy offers leading edge technology designed to both energize and maximize cellular function in the human body.

Humans are exposed daily to various forms of energy; be it light, sound etc. Each form of energy has it’s own unique influence on how one lives and feels. Similar to how a bright sunny day (light energy) can elevate one’s spirits emotionally or quiet solemn music (sound energy) can invoke feelings of sadness, humans too can be influenced positively by specific magnetic fields.

The Ill-effects Of Zero Gravity…

The Space Programs of the 1960’s provide interesting validation to the “ human” benefits of daily “exposure” to the earth’s magnetic field. A Russian astronaut (Yuri A. Gagarin – 1961) after circling the earth in zero gravity was left critically ill, to the extent that he literally had to be carried out of his space capsule on a stretcher! Following extensive testing as to the cause of his apparent state un-wellness, it was concluded that he was suffering from prolonged absence from the earth’s magnetic field!

Further Research into The Benefits Of Magnetic Fields…

Japanese researcher K. Nakagawa (1976) discovered that individuals, deficient in their “optimal” daily exposure to the earth’s magnetic field, can often display the following symptoms:

  • anxiety
  • insomnia
  • lethargy
  • sadness
  • achiness and soreness of muscle and joints
  • back pain
  • decreased metabolism
  • diminished bone density
  • headaches

 

Schumann Frequencies …

What this all speaks to is the defined human benefit of being influenced daily to the earth’s magnetic field in sufficient amounts. Humans exist in an electrically charged atmosphere called the Ionosphere. The Ionosphere contains charges particles (called ions) that are continually charged by a multitude of lightening strikes that occur around the world on a daily basis. This charging of the atmosphere creates a specific narrow band of naturally occurring low frequency electromagnetic emissions called Schumann Frequencies (as discovered by Dr. Winfried Schumann – Physicist in 1956). Schumann believed that this band of magnetic frequencies offered unique healing properties.

Further Study Revealed….

At a cellular level, human cells resonate either in healthy vibrational states or they exist in varying forms of disharmonious (diseased) states of oscillation. For example, cells in “pain” (the result of trauma) will resonate in a disharmonious or less than ideal manner. These same cells, if exposed to Schumann frequencies, will once again vibrate in healthier modes. Both Red Blood cells and Macrophages vibrate more optimally and act more functionally (as seen under a microscope) after exposure to Schumann frequencies.

Optimal Cellular Function…

Schumann Frequencies are thought to resonate with the human body so as to re-establish and maintain harmonious activity at a cellular level, resulting in positive physiological responses. Re-establishing healthy cellular activity is directly related to the stimulatory effect Schumann Frequencies seem to impart at a cellular level on what are called “Sodium Potassium Pumps” in the cell membranes of every cell in the human body.

Sodium Potassium Pumps – The Key To Optimal Cellular Activity…

Individual cells in the body function ideally when properly energized. More specifically, Sodium-Potassium Pumps enhance both cellular function and as well retard the aging of all cells. Sodium-Potassium pumps accomplish this by both assisting in cellular growth and repair (in terms of the proper absorption of nutrients, vitamins and oxygen) and in cellular elimination (in terms of the  removal of waste and carbon dioxide). Sodium-potassium pumps also help maintain the function of specific surface membrane receptors located on the outer wall of all cells. These receptors are involved in the interplay of hormones and their regulatory effect on cellular and inter-cellular function and communication. In essence, strong Sodium-potassium pumps help create a healthy environment through which all living cells can thrive. Enhanced functional activity of these Sodium-Potassium pumps has been clinically linked to exposure to this specific range of natural electromagnetic fields … more specifically Schumann’s Frequencies!

Enhanced Cellular Function…

The entire metabolism of each cell is thus enhanced. This in turn results in:

  • increased blood flow throughout the body
  • enhanced oxygen delivery
  • a strengthened immune system
  • increased nutrients, vitamins and minerals absorption
  • enhanced respiration
  • increased bone density
  • better system detoxification (liver, kidneys, lungs and spleen)
  • enhanced cellular response to hormonal stimuli and favoured inter-cellular interfacing

In general… optimized cellular function, stabilized biological activity and enhanced overall cellular vitality. http://homeopathyoflondon.com/magnetic-resonance-therapy.php