A Wonderful Playdate

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.

SMA International Remembrancen Day

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.

Hi everyone. Things have been good here. Everyone is healthy. I have added a couple of new photos. Thanks to everyone who checks in and is thinking about Shira and us! We greatly appreciate the support. Maxine baked Challah for the first time today.

B.C.'s 150th Birthday, Iguanas and The Second Brain

The weekend was better than usual. We all took in our provinces 150 year birthday celebration. On Saturday we stood in front of our parliament building and listened to our Prime Minister Stephen Harper deliver a speech. Gordon Campbell the premier of B.C. was also there. Unfortunately Shira totally melts down and her vital signs crash when people clap and cheer; she absolutely hates it. So we didn’t get to see the concert which had among others Cold Play and Sara McLaughlin. During Cold Plays set we walked around the inner harbour with about 50,000 other people and the Canadian Air force’s Snow Birds doing manoeuvres overhead. Sam of course was blown away with all those jets flying in formation over head and so close to all the buildings. It was loud and thunderous. Shira didn’t really know what to make of the whole scene because we do live quite a solitary life so that she doesn’t get sick. While we were at the event Shira of course got to pat many dogs and an iguana. Shira has a plastic iguana at home that she loves to play with so when she got a chance to touch a real one it really made her day.

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.

A Weird Day-Pain And Suffering Abroad

Today was a weird day. We just couldn't get it together. The energy all around us was off. Have you ever had that feeling that you just weren't in step with your surroundings? We had good intentions. After waking and going through the morning routine of waking up, Chest Physio therapy and just getting out the door which can take 2 hours we drove down the road to a farm near our home. The place just had a bad feeling. The animals were behind fences (some petting zoo) and it just drove Shira nuts. When Shira cries she chokes and too much crying just leads to desating (vital signs start to go down because of all the choking). I guess i'm really tense because I read a letter from one of our doctors last year that said, 'Shira is doing well as she must be a stronger Phenotype.' You can read what that is here http://en.wikipedia.org/wiki/Phenotype
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.

Our City's Birthday, Firetrucks And Scary Old Ladies

Another beautiful day in Victoria. We didn't think we would get out today because Maxine is still battling something that we think is strep throat. This weekend is the 150th birthday of Victoria and a long weekend here so there are lots of events taking place in our city. We went downtown and walked along the waterfront and watched a parade of over 50 firetrucks from all over the North West. The firetrucks ranged in age from the early 1800's right up to the newest trucks. Shira loves fire trucks because of Elmo's video Elmo visits the firehouse. We have also had the fire department here a couple of times as they respond to respiratory arrest calls (sigh).

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.

A Beautiful Fresh Rainy And Now Clear Baseball Ready Day

Just a quick note. The last couple of days have been really good. It finally rained here, yay!! It's absolutely beautiful out which is great because there is a baseball tournament not far from our home. Shira loves her baseball so we will be doing that a lot this weekend. No other news to report really. Shira's health is good, Maxine is still under the weather but has started on a round of antibiotics. We think Maxine has caught Sam's strep throat from a couple of weeks back. No news is good news in the SMA world. Keep up the good fight.