Saturday, August 30, 2008
Thursday, August 28, 2008
Here is an interesting quote about discovery I found enlighteneing. I have been told so many times that some of the therapies I want to use on my daughter are old or old therapies being used again as if that should disuade me from using something that is affective. Dr.'s are funny!! May we pray to g-d that he give our good doctors wisdom!! I hope everyone is having a good week and enjoying life.
'Those of us who deal in science, even the most enlightened of us, have a strong and objectionable tendency to hubris. Hubris for scientists comes from an inadequate knowledge and appreciation of the past. Discoveries are thus made and claimed that are really rediscovered - not new advances at all, but history lessons. I have to concede priority to people who came before me. Rediscovery is every bit as good as discovery, If what is rediscovered is important and was forgotten. It is better still when the rediscovered information has the capacity to improve the lives of those around us.'-From the book THE SECOND BRAIN by Michael D. Gershon, M.D.
I've also been reading something other than medical books lately. I don't know if you have ever heard of Zora Neale Hurston www.zoranealehurston.com
but what a writer. She was an anthropologist as well, a real amazing person. Some of her writing is poetic, earthy. Here's an outtake of a short story. Enjoy!
Shira is doing great. Sammy is in his last Summer Day Camp and will be starting grade 1 shortly. We are so proud of Sammy, what a loving brother to his sister!
The weather here has changed and I have so much yard work. Oh well, can only do so much. Maybe I should buy some goats? Hmmmmm.
The brook laughed and sang. When it encountered hard places in its bed, it hurled its water in sparkling figures up into the moonlight.
It sang louder, louder; danced faster, faster with a coquettish splash! at the vegetation on its banks.
At last it danced boisterously into the bosom of the St. John's, upsetting the whispering hyacinths who shivered and blushed, drunk with delight of moon kisses.
The Mighty One turned peevishly in his bed and washed the feet of the Palmetto palms so violently that they awoke and began again the gossip they had left off when the Wind went to bed. A palm cannot speak without wind. The river had startled it also, for the winds sleep on the bosom of waters.
The palms murmured noisely of seasons and centuries, mating and birth and the transplanting of life. Nature knows nothing of death.
The river spoke to the brook.
'Why, O Young Water, do you hurry and hurl yourself so riotously about with your chatter and song? You disturb my sleep.'
'Because, O Venerable One, ' replied the brook, 'I am young. The flowers bloom, the trees and wind say beautiful things to me; there are lovers beneath the orange trees on my banks, -but most of all because the moon shines upon me with a full face.'
Sunday, August 24, 2008
I have to honestly say that the only people that really understand exactly what we are going through are people that are disabled, parents and caregivers of the disabled, or other people faced with or have been faced with life threatening illness. I've had a family member even tell me once after I suggested a video for them to watch on SMA that, "I'm not interested, it doesn't affect my life." I've had other's suggest that we should have no complaints as we made our own choice to care for someone this disabled when we also had the choice just to let her die. I have realized that though I live in the west, in a democratic society that there is still a mob mentality and that there is a lack of caring and positive attitude when it comes to quality of life issues and the disabled. We have people in positions of power controlling and pushing their belief systems on people that do not have the ability to affect immediate change to their direct circumstances and that they are forced to let their children or family members die based on powerful peoples opinions.
So, today people mostly suck! Again, we have found that we have experienced a great outpouring of love and support from where we least expect it and the least from where we most expect it. People often ask, "then what do you want, what do you need?
We have come to realize that when you mention support the first thing people think is, "they want money!" If you ever want to get rid of anyone really quickly out of your life just be bold and ask them to give you money, you can be assured you won't hear from them again. When I say support, what I am talking about is emotional support. Everyone gets on their computer every day and just an email or a quick phone call to let families know you are there is enough. Of course physical help can also be very helpful.
So this is a call to you. Pick up the phone or send an email to someone you know that needs it and keep on doing it. I know that from my work experience I could call 50 people in 2 hours. I did this almost every day to generate leads. Many leads became customers, many leads introduced me to customers and some leads became friends, some leads become customers and friends and remain friends. Its funny how many people can make phone calls for money but they find it extremely difficult to call people that need to be supported. One is fake, make believe, acting while giving someone support is the real you. All I can say is is that if you are not supportive to those you know it is a reflection on you. Think about it. Everyone knows someone who is old, fragile, sick, or grieving. If you are close to these people in good times but aren't there just to listen in times of bad how does that look? Those people you do that to will know you are not friends, and that in reality, you are only shallow acquaintances.
I had an epiphany the other day. There are so many problems in our medical and social systems regarding the care of the elderly and children. The problem is no one cares and no one is being supportive of these adults and children. The viscous cycle of lack of love and support is taking place under the roof of these care facilities and it is a mirror of our society as a whole. It used to be that the elderly were held in high esteem and respected as people of knowledge while the young were depicted as our nations future, but our corporate minds have been branded through extreme marketing to measure ones worth by wealth alone. Unfortunately, chivalry, gallantry, and the lessons of King Arthur and his noble knights have been lost to the status quo, conventional wisdom, logo and instant gratification by the acquisition of empty material objects.
Have a nice day :)
Monday, August 18, 2008
Gentlemen! Today is the first time that I realize the presence of life! Gentlemen! I beg you to leave me alone for a moment, so I can savor this formidable, spontaneous and recent life emotion, which today, for the first time, enraptures me and makes me happy to the point of tears.
My joy come from what is unexperienced of my emotion. My exultation comes from the fact that before I did not feel the presence of life. I have never felt it. If anyone says that I have felt it he is lying. He is lying and his lie hurts me to such a degree that it would make me miserable. My joy comes from my faith in this personal discovery of life, and no one can go against this faith. IF anyone would try, his tongue would fall out, his bones would fall out and he would risk picking up others, not his own, to keep himself standing before my eyes.
Never, except now, has life existed. Never, except now, have people walked by. Never, except now, have there been houses and avenues, air and horizons. If my friend Peyriet came over right now, I would tell him that I do not know him and that we must begin anew.
When, in fact, have I met my friend Peyriet? Today would be the first time we became acquainted. I would tell him to go away and come back and drop in on me, as if he did not know me, that is, for the first time.
Now I do not know anyone or anything. I notice I am in a strange country where everything acquires a Nativity relief, a light of unfading epiphany. No, sir. Do not speak to that gentleman. You do not know him and such unexpected chatter would surprise him. Do not put your foot on that tiny stone: who knows it is not a stone and you will plunge into empty space. Be cautious, for we are in a totally unknown world.
What a short time I have lived! My birth is so recent, there is no unit of measure to count my age. I have just been born! I have not even lived yet! Gentlemen: I am so tiny, the day hardly fits inside me.
Never, except now, did I hear the racket of the carts, that carry stone for a great construction on boulevard Haussmann. Never, except now, did I advance parallel to the spring, saying to it: 'If death had been something else....' Never, except now, did I see the golden light of the sun on the cupolas of Sacre-Coeur. Never, except now, did a child approach me and look at me deeply with his mouth. Never, except now, did I know a door existed, and another door and the cordial song of the distances.
Let me alone! LIfe has now struck me in all my death.
Baby's death: parents want to advise others
17 August 2008, 13:43
By Noelene Barbeau
A young Durban couple's new- born son died recently from spinal muscular atrophy, a motor neuron disease.
In his memory, they want to create more awareness of this disease and help fundraise for expensive equipment that many families cannot afford to buy their children.
Spinal muscular atrophy (SMA) affects the voluntary muscles used for activities such as crawling, walking, head and neck control and swallowing.
Lavon Chetty was just 56 days old when he died. His parents, Dean and Terene Chetty, of Parlock, were thrilled to welcome him into the world on June 1.
However, a week later, after a series of tests, they learnt he had SMA type zero, a new classification of the disease and apparently the worst. At present, there is no cure for SMA.
'The day we found out, we came home and started doing some research on the Internet. We had never heard of such a disease and the internet just listed three types of SMA.
'SMA zero is when a baby has the disease from birth. At first Lavon could move his fingers, hands and legs, but slowly this stopped. From the time he was born he couldn't breathe without the ventilator. He also had to have a drip and a tube placed through his nose that went to his stomach,' said the grieving dad.
'He was a very alert child. He would smile when we spoke to him and would frown or cry if something was hurting, but his eyes told you his story. We had a short time with him, but we formed a close bond. The nurses were also very fond of him. They really went the extra mile for Lavon,' said Terene.
They were regulars at the neonatal ICU ward at St Augustine's Hospital and had a team of doctors to help. Forming part of the team was Prof John Rodda, a paediatrics neurologist from Johannesburg.
He said SMA affected children across all race groups and was the most common neuromuscular disorder in children.
'Regarding testing for SMA, it won't be detected in women who are pregnant for the first time, unless there's a family history of SMA,' he said.
'Antenatal testing can be done if the couple suspect their unborn child could have SMA.
'A child's blood can also be tested if his or her parents think he or she might have it.'
Terene was not tested for SMA while she was pregnant with Lavon because neither Dean nor Terene's family had a history of SMA.
But knowing what she does now about SMA, Terene feels every pregnant woman should be tested for it at their first eight-week check-up and from there make an informed decision if SMA is detected.
The couple said they had known a few days before Lavon's death that he was going to die.
'We had to plan a funeral for him before he died. That was the hardest part,' said Dean.
The Chettys searched the internet for a local website that could help them speak to parents who had been in a similar situation.
They found the Leah Reilly Foundation and met Cara Reilly, whose daughter Leah died a year ago when she was 19 months old. Leah was diagnosed with SMA type 1.
The Reillys also found a lack of support in South Africa, which led to Reilly establishing the foundation.
Reilly said local statistics were not available and she was aware of only eight South African cases.
At a recent fundraiser, University of Witswatersrand lecturer Diane Manning said she would include SMA studies in the medical syllabus from 2009.
Friday, August 15, 2008
Elizabeth is beating the odds
By Peg Reynolds, Staff Reporter
Published: Friday, August 15, 2008 1:28 PM CDT
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Pontiac Fire Department will “Fill the Boot” again this weekend to help Jerry’s Kids who are afflicted with muscular dystrophy. The firemen will be accepting donations between 10 a.m. and 1 p.m. Saturday at Pontiac Wal-Mart and Sunday at Big R. With the firemen is Elizabeth Hallam, of Pontiac, the Goodwill Ambassador for the MDA for Central Illinois. She suffers from spinal muscular atrophy type 1. Firemen from left are Scott Runyon, Todd Gould, Andy Vitzthum and Jace Weaver. (Photo provided)
There is a 4 1/2-year-old Pontiac girl who is surpassing a doctor’s prognosis of not celebrating her second birthday.
Elizabeth Lee Hallam, born Sept. 29, 2003, was diagnosed with SMA (spinal muscular atrophy) type 1 on May 11, 2004. Her parents, Christen Huette and Brandon Hallam, learned that this was the number one genetic killer of children under the age of two.
SMA is a group of inherited and sometimes fatal diseases that destroys the nerves controlling voluntary movement. This affects crawling, walking, head and neck control and even swallowing.
Two months after Elizabeth was diagnosed, she was placed in a clinical study at Stanford, Calif. The study is funded by MDA, but the cost of the trip, their lodging and Elizabeth’s medication, which costs between $200 and $300 a month, are not. The mother and daughter must travel to the California hospital every four months for follow-ups.
“It’s hard to get the money, but we do it for Lizzy,” Huette said.
They discovered early in the study that Elizabeth was not on a placebo, but was taking the medication hydrozyurea, which was developed by Dr. Ching Wang.
“Her movement increased after taking the medication for two weeks,” said her mother. “When she was first diagnosed, she didn’t move the bottom part of her body at all. She was moving her legs, starting to bend her legs while laying flat on the floor, and she looked like she had more energy.”
Elizabeth started to lose her ability to swallow after a case of strep throat soon after their first trip to Stanford.
“She got really ill and would gag when eating or refused to eat at all. Our doctor's nurse told me, ‘There is nothing more doctor can do for Elizabeth.’ Their opinions have since changed because of how well Elizabeth has been doing for the past three years.”
A nissen/g-tube saved Elizabeth's life, her mother said. A swallow study had showed Elizabeth was silently aspirating on liquids.
Elizabeth requires around-the-clock care, which is shared between family members. She has physical therapy once a week
Huette said she owns a van, but it does not have a wheelchair lift. A ramp was built at their Pontiac home by RAMP. She is inquiring into a home school video conferencing live feed, which is funded by a foundation. Her daughter can not mix daily with other school-age children, as a simple illness would land Elizabeth in the hospital for two weeks, or worse.
Huette said her parents, Herb and Jeanne Huette, have helped her and Elizabeth through their trials, as have the other members of the family.
Huette also praises the efforts of Senator Barack Obama and State Sen. Dan Rutherford, R-Chenoa, who have both come to her rescue when she battles “red tape.” “I have them both on speed-dial,” she said.
The Pontiac Fire Department is another group that is helping Elizabeth fight her battle. They will conduct their second and third “Fill the Boot Drive” this weekend. On Saturday they will be at Wal-Mart from 10 a.m. to 1 p.m. Sunday’s collections will be at Big R from 10 a.m. to 1 p.m. Monetary donations collected for the MDA drive will stay in this area, a press release said.
Wednesday, August 13, 2008
This weekend Shira had a very special treat. While Sammy has had several play dates at home Shira had a special visit by 2 new friends Tete and Helena and their mother Marie. Shira had so much fun!! Because we keep Shira away from sick people, exposure to crowds in enclosed places etc. it limits the kinds of things Shira can do as well as her contact with others. But the day was special and Shira had the best time and the girls were so attentive to Shira. The girls spent alot of time playing beside Shira so Shira could watch and take part in everything they were doing. We look forward to our next play date. Shira had so much fun she cried when the play date was finished. We are so happy for Shira that she has found some new friends.
Sunday, August 10, 2008
Last night was international SMA remembrance day. The day always makes us a little anxious because it is a day filled with hope for a cure and knowing with the right therapies our daughter will not die an untimely death. The day also reminds us of all the kids that have been lost to this terrible disorder. We have had very close friends loose their children and it only serves to remind us of Shira's mortality and the reality of this terrible disorder. We pray for a cure or a miracle. Prayers to all the angels in heaven and all the parents that have lost these angels. Look down on our Shira and keep her and all the other's here healthy until we find a cure!! We are thinking of all of you tonight and always.
Friday, August 8, 2008
Wednesday, August 6, 2008
Today (Wed) Shira, Maxine and I walked around a golf course that has a trail and duck ponds. It was really hot out and the walk turned into more of a sweaty work out pushing her stroller over a bark mulch path; All in all a really nice day.
On another medical rant I came across something in a book I have been reading called “The Second Brain” by D. Gershon, M.D. The premise of the book is about how the stomach is not controlled by the brain and how it functions with and without the brain controlling it. I found the premise interesting because Shira’s brain isn’t able to send its signals throughout her body and so I’m hoping there will be some clues within the book that might lead me to some ideas as to how I can improve Shira’s diet etc. Since Shira is missing certain cells that the brain uses to send signals to muscles I thought the book would also shed light on how Shira’s digestive system is still able to work to such a high degree.
But what I really want to talk about is something Dr. Gershon sheds light on at the very beginning of the book. When I wanted Shira to start using the cough assist Dr.’s were literally trying to talk me out of it saying its unproven, there’s no empirical evidence and that the machine is an old idea brought back. Here is what Dr. Gershon has to say about old ideas.
“Those of us who deal in science, even the most enlightened of us, have a strong and objectionable tendency to hubris. Hubris for scientists comes from an inadequate knowledge and appreciation of the past. Discoveries are thus made and claimed that are really rediscovered – not new advances at all, but history lessons.”
“I have to concede priority to people who came before me. Rediscovery is every bit as good as discovery, If what is rediscovered is important and was forgotten. It is better still when the rediscovered information has the capacity to improve the lives of those around us.”
It’s comforting to know that somewhere in the world there are real scientists with open minds thinking about truly helping people even if it means using someone elses old ideas in a new way.
On another note, apparently Sam told his councillor at sports camp today that he reminded him of Dave a councillor from Sponge Bob Camp except that he had a different face. I just love kids!!!!!
Keep up the good fight everyone.
Sunday, August 3, 2008
You know, when Shira was first born the neurologist looked at her and told us she was so weak she probably wouldn't live a year. Now that Shira is 3 she is considered stronger. None of the medical professionals really discuss the care she gets and the effectiveness of Dr. Bach's NIV Protocol because he is an unproven quack.
All us SMA parents hear the same thing 1) your child is so weak take them home and love them until they die 2) No you can't put your child on the AA diet its unproven 3) No you can't use the cough assist your child is too young, too weak, you'll give her a pneumothorax (blow out her lung) 4) There's nothing you can do for your child and on and on.
I just get so pissed off when another parent phones or writes me from another part of the world and I hear the same BS come out of the mouthes of these doctors with absolutely no experience in the care of SMA patients through the patients life. And the poor parents see all of us with our older kids and they scratch their heads because if they apply what they are being told and then look at us you start thinking that someone is not telling the truth.
I know how hard it is to fight against a system that is supposed to be helping you. A system that runs on conventional wisdom with all research carried out behind closed doors until a cure is found. We don't here about what happens to all the patients that are tested on we only here about successes.
Then what about the patients that suffer from serious stuff life Shira where they are actually missing genes. Cancer can be cured and you can live with it for a long time because you are a whole person with the added cancer. I'm not downplaying the terror and everything else cancer brings including death but you have a chance of being cured or and going into remission. I'm no fool and I see SMA patients dying left and right, there is no cure and life expectancy is short. The problem i have is that the medical system doesn't like this sort of patient. The medical system likes the patients where they have a chance to live. You hear about how effortlessly and quickly the medical system here responds to cancer patients. I rarely see a cancer patient in the news advocating for their life but I see parents with children with disabilities or families with geriatric parents in the paper advocating all the time.
What is this? Are we only survivalists? Do we only care about winning and not just playing the game anymore. I guess we are only a country of winners and to be a winner you have to be rich its still not ok to be Joe Shmoe and be a winner you have to be a movie star, rock star, business tycoon, habitual bank robber on CNN, and you have to be rich or famous!!! And when you are famous you get service even if you are a real bad but famous criminal, you get quick and effective medical care should you need it.
Now i'm not saying that we don't have what we need now because we do but I relive the terror of loosing my child every time a newly diagnosed family calls me for help wondering how I got what I have for Shira.
I've decided to post the Hippocratic Oath both the old and new maybe if you are having trouble with your doctor you can give him a copy.
Hippocratic Oath -- Classical Version
I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfil according to my ability and judgment this oath and this covenant:
To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art - if they desire to learn it - without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but no one else.
I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.
I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.
I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.
Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.
What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about.
If I fulfill this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.
Translation from the Greek by Ludwig Edelstein. From The Hippocratic Oath: Text, Translation, and Interpretation, by Ludwig Edelstein. Baltimore: Johns Hopkins Press, 1943.
Hippocratic Oath—Modern Version
I swear to fulfill, to the best of my ability and judgment, this covenant:
I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.
I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.
I will remember that there is art to medicine as well as science, and that warmth, sympathy, and
understanding may outweigh the surgeon's knife or the chemist's drug.
I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.
I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.
I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these
related problems, if I am to care adequately for the sick.
I will prevent disease whenever I can, for prevention is preferable to cure.
I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with
affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.
Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.
Saturday, August 2, 2008
On another weird note one of my pet peeves that has been bothering me is that where ever we go people see Shira and automatically assume she's sleeping because she is laying down. A couple of very old woman walked past us today saying, 'Oh look at her she's dead to the world.' My heart just sank. I know that they didn't mean any harm by what they were saying but in my head I was thinking, 'you don't know the half of it.'
Nobody really understands exactly what Maxine and I do with Shira. Most people just think Shira is sick and that's it they don't realize we actually keep her alive by the Intensive Care we give her throughout the day. No matter how many times you explain it to some people they just don't realize that you can't leave these kids alone un monitored.
I know that some people think we are over reacting with Shira. They know she is really sick and supposedly has a terminal illness because she is so happy when they see her they don't realize we are giving her hands on 24 hour intensive multi disciplinary care to keep her looking so cheery, happy and freakn' alive!!!!!!!!!!!!!!!!!
The day was good except for the usual freaky human contact I so dread when I go out into world. People mostly suck and really are totally indifferent uncaring, and more interested in themselves than anything else.
Anyways, B'H Shira is well, happy, here and if I had to cut both arms and legs off to keep her here I would in a second.
Tomorrow is supposed to be nice weather as well so we will carry on with our weekend celebrations of our wonderful city. Sam had a blast today and Maxine was a trooper for getting out of the house for a while to help relieve my cabin fever. Keep up the good fight everyone.