New Video Of Shira's Adventures

Here's a new video of some of my favorite photos and videos of Shira from the past and recently.  Enjoy.  Brad

MASTERY OF MIND OPENS AVENUES OF HOPE

 Change your attitude, look past yourself and deliver the care your child needs.  Remember it's not the caregiver who is sick and needs help it's the patient.  We have to move past anticipatory grief, spend time with our children that is where our healing lies in the time we spend with our children.  

All that we are is the result of what we have thought.
   – The Buddha

"Our destiny is in our own hands. Since we are formed by our thoughts, it follows that what we become tomorrow is shaped by what we think today.

Happily, we can choose the way we think. We can choose our feelings, aspirations, desires, and the way we view our world and ourselves. Mastery of the mind opens avenues of hope. We can begin to reshape our life and character, rebuild relationships, thrive in the stress of daily living – we can become the kind of person we want to be." ~ Eknath Easwaran

"The door that locks you in, is also the door that lets you out."-Sri Nisargadatta Maharaj

TAKE YOUR TIME

"Personal relationships, of course, not only take time, they take 'quality time.' This is especially true with children, where what matters is not only the number of hours we spend but also the attention we give, the love we show, the extent to which we enter into the child's world instead of dragging him or her into our own. Schedules are fine at the office, but children have a sense of time that is very different - and much more natural. They don't know about appointments and parking meters and living in the fast lane, and we cannot make them understand. All we can do is hurry them along.

"We adults can learn to slow down enough to enter their world; it's not their job to speed up and join ours. Where is the hurry?"

- Eknath Easwaran, from "Take Your Time"

 

SHIRA'S SCARY, GROSS AND REALLY FUN PLAY DATE WITH LIA OCTOBER 06, 2013

Shira Swinging In The Living Room

The Vestibular System is often overlooked in the over all care of patients with Spinal Muscular Atrophy.  Oral therapy, standing, swinging, laying on a massage mat, vibration etc all helps develop the vestibular system.  If you build your own swing make sure you secure the swing through a ceiling joist.  We purchased a single person hammock for $35.oo and use a tomato chair inside to support Shira along with a hensinger neck brace.

Spinal Muscular Atrophy Type 1

Looking after a child with SMA Type 1 is intense. I would describe my experience delivering multi disciplinary intensive care 24/7 something like this. Imagine you are part of an expedition climbing Everest. As you are climbing you are relying on all of your gear and experience to keep you alive (in this case our child alive). One day a huge storm rolls in and half of your expedition is killed during the storm. It's to close to the top of the mountain so you decide to pray for the dead and push on to the summit. It's all about "looking past yourself" and delivering the care your child needs or they will die, simple as that. This is life with SMA.

The AA Diet, Low Fiber and Fecal Compaction

The AA Diet, Low Fiber and Fecal Compaction I would just like to start off by saying that I believe that most of you SMA Type 1 parents will be able to take their children off of Mirilax and other stool softeners by adding fiber and more hydration to your child's diet. There are always contradictions but I have calculated a lot of diets and the one thing missing from the AA Diet is an abundant fiber source. After 61/2 years of using Mirilax and Pedialax Shira is now having consistent bowel movements on her own. Please read about our experience below and try adding fiber to your child's diet I think you will be amazed! Also remember to make sure your child is calculated optimally and properly hydrated before adding fiber to your child's diet. Consult your physician or dietician first;) Hi everyone we are back from our trip to Disney. In all we drove over 4000 km this trip and it was not without some health glitches I would like to discuss. As many of you know I calculate a lot of diets for people. Well I’m sorry to say that I was negligent when it came to Shira’s diet and it only drove home the importance of following my own theory of 1) calculate optimally and 2) re calculate often. I had measured and weighed Shira about a month before leaving but never got on it. I just figured I’d up her water in her diet to deal with the low humidity and heat in California. Unfortunately Shira developed a severe case of constipation! It was so bad she didn’t pass a bowel movement for almost 2 weeks. A grapefruit size ball was sitting in her stomach and at her worse she refluxed. HOW I DEALT WITH SEVERE CONSTIPATION The first thing I did was re calculate Shira’s diet. This is embarrassing for me but I’m sharing it to show the importance of re calculating diet often especially when our children have growth spurts. Shira was about 425 mls of fluid under where she should be. The first thing I did was added 425 mls more water to her diet. This still did not allow Shira to pass a bowel movement. After about 3 days I was giving Shira enemas using a 60 ml syringe in the bathtub of the hotel. I was doing this 2 or 3 times a day with no luck! I was getting worried to say the least. Luckily we had a few contacts down south and we ended up at Kennedy Swann’s doctors Dr. Cramer. We started Shira on the same drug they use for men needing a colonoscopy and we thought this would clear Shira out. Of course I’m very concerned about adding so much more liquid into Shira’s diet with such a constipated stomach. Our kids are stomach breathers and we try and avoid doing anything that will hamper their ability to breath easily. Anyways after giving Shira the oral medicine every 4 hours we also tried dealing with the constipation using a suppository (dukolax) from the other end. Shira started passing a little stool but not enough! We took Shira to the ER at Choc and had her x rayed and boy was she constipated. The ER doctor at CHOC was very thorough also and was interested in Shira’s diet believe it or not. He advised I give Shira something easier on her stomach like milk of magnesia but also increase Shira’s water (which I had already done) and add fiber to her diet. Maxine went to the healthfood store and purchased some TripleFiber by renew life and we added a dose to her daily dose of food. At this point I was still giving Shira 3 enemas a day with no results. Shira had refluxed and I had started her on antibiotics I brought because she also had a fever. I’m freaking out at this point also because of insurance reasons. I just wanted to get home in case we needed to be hospitalized. So now we had increased Shira’s daily water intake, added fiber to her food and I started giving her Senna leaf to make her have a bowel movement and I was still giving her half a dose of Dukolax every day. I was going through whole boxes of pedialax and giving shira an enema and nothing was working. Finally by the time we hit Portland about 8 days after Shira’s constipation started she had a bowel movement. I kept up with the pedialax, dukolax and Triple Fiber and by the time we got home Shira was having some strong consistent bowel movements. I also started to notice that Shira was now having a regular bowel movement in the morning without the use of Mirilax or pedialax! It’s now been 5 days since we have used any drug and the only thing different in Shira’s diet has been the addition of the fiber as well as the diet being calculated optimally and timely! I have calculated a lot of diets for parents and like Shira they were all on mirilax (or some other form of stool softener) or pedialax but no fiber in their diet. I would now like to recommend that anyone on the AA Diet with a Mickey Button (G tube) add a dose of fiber to their childs diet I believe you won’t have to use anymore Mirilax. Shira was on Pedialax and Mirilax for almost 61/2 years and we are off it completely now and her stool is healthier than ever! The brand of fiber we use is TripleFiber by RENEW LIFE. REMEMBER CALCULATE YOUR CHILD’S DIET OFTEN AND OPTIMALLY AND ADD FIBER TO IT! Let me know if you can also remove your child from Mirilax after adding fiber to their diet but before adding the fiber consult with your doctor and make sure your diet has been re calculated to insure your child is properly hydrated!

Disabled visitors left high and dry on area beaches

Disabled visitors left high and dry on area beaches

Brad Fisher pushes daughter Shira’s stroller-wheelchair up an uneven pathway from Willows Beach.

Emma Prestwich/News staff
By Emma Prestwich - Oak Bay News
Published: August 02, 2011 10:00 AM

Brad Fisher pants as he heaves his daughter Shira’s specialized stroller-wheelchair up the steep, uneven sand path from Willows Beach.
He enlists the help of caregiver Stephanie Davidson to pull the stroller up backwards, then pushes it the last few feet himself.
Several short stairwells can be found along the length of the beach, but the rough-hewn little trail is the family’s only access down to the sand, where six-year-old Shira, who has the genetic disorder spinal muscular atrophy, loves to play.
Fisher and his daughter have tried out many beaches in the region. Even with its bumpy
path, Willows is the only one that comes close to being friendly to Shira’s specialized wheelchair. It’s also ideal because of the hard-packed sand, rarely found on other shorelines.
Fisher is angry that public beaches are so difficult to access for people with disabilities, and doesn’t think adapting them would be hard.
“They might say ‘well, we could make a ramp there, but what are they going to do when they hit the sand?’” he said.
“You leave (manoeuvring a wheelchair on the beach) up to us, but at least we’ll be able to get down to the sand.”
Tamara Lohner’s daughter, Charlotte, has the same condition as Shira. Even though they live downtown, they usually head to Thetis Lake Park because it is the only lake with stroller-friendly access.
Visits to Willows in the past saw Lohner forced to carry Charlotte and leave the stroller behind.
“It’s hard; she’s like a really heavy, wet noodle,” Lohner said.
Having a full-time job and a son with Down syndrome leaves her little time to worry about beach access. “I just don’t think about it that much.”
There are currently no plans to improve accessibility at Willows Beach, said Oak Bay parks manager Lorne Middleton. He noted a low, sloping path leads to the water at the base of Estevan Avenue.
But Fisher said large logs washed up on the path during the winter, making it a two-person job to hoist Shira’s chair over the logs. Middleton said he wasn’t aware the path was blocked and would address the issue.
The Capital Regional District website (www.crd.bc.ca) lists three beaches with accessible elements: East Sooke Regional Park, Elk/Beaver Lake Park and Island View Beach. Only Beaver Lake has a path leading to the water, and has an accessible fishing float and boat launch.
There is also a ramp leading to the beach near Clover Point.
Many Capital Region municipalities consider accessibility when planning for parks and public spaces.
But it’s hit or miss when it comes to specific guidelines.
The City of Victoria doesn’t have any official policy relating to beach accessibility, said
Todd Stewardson, acting assistant director of parks.
“We’re not discouraging it, but we’re more focused on maintenance of the natural area,” he said.
Beaches are dealt with differently than parks, he said. Many factors come into play when adapting them, such as the specifications for the slope of a ramp and measuring its impact on the surrounding environment.
Saanich parks manager Rae Roer says Gyro Park beach has gentle trails that lead from the parking lot to the sand. He tries to ensure there’s always a clear route to the beach. But he also doesn’t want changes to “sanitize” the beach. “We tend to manage beaches in a fairly natural, wild, West Coast style,” he said.
Joanne Neubauer, president of the Action Committee of People with Disabilities, said improvements don’t have to ruin a beach’s natural charm. “There are so many ways to achieve accessibility that wouldn’t necessarily change the overall atmosphere of the park,” she said.
Many beaches, such as the inlet by Mount Douglas and the stretch along Dallas Road, have steep approaches and would be harder to adapt. But Neubauer, who uses a motorized wheelchair, said there are several that are fairly flat.
“I know there are geographic constraints, but there are other beaches where that’s not the case, and they still haven’t made any effort to make sure everyone can access the beach.”
She suggested a ramp could be cut out of the concrete walkway that runs alongside Willows Beach. “It doesn’t always involve rocket science.”

Three new screening tests for diseases available as Jewish Genetic Disease Consortium trains more rabbis, reaches out to intermarried.

Published on The Jewish Week (http://www.thejewishweek.com)

Home > ‘It’s Not Just Tay-Sachs’


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‘It’s Not Just Tay-Sachs’
Three new screening tests for diseases available as Jewish Genetic
Disease Consortium trains more rabbis, reaches out to intermarried.

Amy Spiro

Editorial Assistant

Tuesday, May 17, 2011




Brad and Maxine Fisher with son Sam, 8 and daughter Shira, 5, who suffers from Spinal Muscular Atrophy.



When Shira Fisher was just 4 months old, her parents already knew that something was wrong. She had frequent problems with choking and serious “physical developmental delays,” said Brad Fisher, Shira’s father and full-time caretaker.

Her parents brought her to several different doctors, before she was finally diagnosed (with the help of Brad’s Internet research) with Spinal Muscular Atrophy, Type 1. SMA affects the motor neurons that control voluntary muscle activities, like walking and swallowing, and causes their degeneration. Cognitive abilities are generally not affected.

At the time of Shira’s diagnosis, “we’d never heard of it,” said Fisher, who was told by doctors that Shira had little chance of surviving past the age of 2, and that he — and mom Maxine and big brother Sam — should “take her home and love her.” The family refused to give up, pursuing experimental treatment and therapies, and Shira will turn 6 next month.

The Fishers did no genetic screening before getting married or having children. “It wasn’t on our radar,” Brad said. But today SMA is one of three new diseases recently added by the Jewish Genetic Disease Consortium to a growing list of conditions for which Jews should be genetically tested.

The JGDC now recommends that any couple in which one member has an Ashkenazic Jewish grandparent be tested for 19 separate conditions, up from 16 last year. When the organization was launched six years ago (though Jews had been tested for years before it began), it recommended testing for 11 disorders. Over the past six years, that number has grown as new screenings and tests became available. New to the list are SMA, Joubert Syndrome Type 2 and Walker-Warburg Syndrome. These diseases are not newly discovered, or recently linked to the Ashkenazic population. But since screenings for the genetic mutation for all three only became widely available this year, the JGDC is now cautioning Jews and others to take advantage of the tests.

While the medical advisory board “has known about these diseases” for a while, said Randy Yudenfriend-Glaser, chair of the JGDC, “unless you can screen, there’s nothing to do.” She also noted that couples who have been screened in the past, and are planning to have more children, should get re-tested for these disorders. And she wouldn’t rule out the list of recommended tests growing in size. “It’s never going to shrink because the diseases don’t go away,” she said. “People think we’ve wiped Tay-Sachs out of the population, but we haven’t; we’ve tested it out.” Carriers of the disease are still common in the population. The medical advisory board of the JGDC bases its decisions “on carriage rate, but also on the severity of disease,” said Yudenfriend-Glaser.

Randi Chapnik Myers knows firsthand just how devastating Walker-Warburg Syndrome can be. She and her husband were screened for Tay-Sachs before having children. When their first pregnancy, in 1995, ended after doctors said the baby would not survive beyond birth, they thought it was a fluke. And after having two healthy children, the Toronto family never imagined the problems that would ensue. Chapnik Myers lost twin babies in 2000, and then a third the next year. Doctors made a diagnosis of Walker-Warburg in two of the three fetuses. “Not only had I never heard of it,” said Chapnik Myers, “I was told after my first loss that it wasn't genetic.”

She hopes that the new availability of screenings can help other women avoid her pain. “Having to wait until 20 weeks to be diagnosed, having a formed fetus growing inside of you, a human being, and moving in to maternity clothes and planning for a child” was incredibly difficult, said Chapnik Myers. “Going through seven deliveries for three children [the third child was born after all of the losses] was a strain emotionally and very physically.”

Since 2005, the JGDC has been reaching out to families, through its community outreach program, and to physicians, with its Medical Grand Rounds Program, hoping to spread awareness of the need for genetic testing in the Ashkenazic Jewish community. Last fall, as reported in this paper, the JGDC launched its Rabbi Education Program, aimed at urging rabbis to discuss genetic screening with couples during pre-marital counseling.

“[It] was the missing link which really rounds out our program,” said Yudenfriend-Glaser. To date more than 150 rabbis across the tri-state area have attended a seminar run by JGDC, and signed a “rabbi pledge,” promising to discuss genetic diseases with young couples.

Recent training events include sessions in Buffalo and Monroe, N.Y., as well as at the Jewish Theological Seminary earlier this month. JGDC is working on developing an online system for rabbis to be trained. Those who already took part in the sessions will receive updated information about the newly added diseases.

The JGDC’s goal is to combat the major misconceptions about Jewish genetic diseases — one of which is that intermarried couples don’t need testing. To that end they are also developing means to reach interfaith couples to raise their awareness.

One of the messages the JGDC deems most important is, “It’s not just Tay-Sachs,” said Yudenfriend-Glaser. Even as she tours synagogues and Jewish centers today, Yudenfriend-Glaser encounters people who are unaware of the dire necessity for genetic testing. She met with a rabbi this year “and he told me, ‘we don’t have any of that in our lineage.’ I did a double take,” she said. “You hear this from educated people; they really don’t realize how much is out there.”

Most importantly, she said, “people need to be advocates for themselves. They should go in armed with a list of the tests and say this is what I want done.”

Read more:

Healthcare
Healthcare
Copyright 2010 The Jewish Week


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Source URL (retrieved on 05/17/2011 - 21:15): http://www.thejewishweek.com/special_sections/healthcare/its_not_just_tay_sachs





Shira's Web Site: http://www.asonginthisworld.com

Shira's Videos: http://www.youtube.com/Shira2



"This book is dedicated to the health care organizations that not only raise money for research to seek cures for neeruomuscular diseases but also train and encourage health care professionals to provide the high-quality care necessary to prevent mortality while cures are being sought." - Dr. John Bach (From the dedication in Dr. John Bach's book Management of Patients with Neruomuscular Disease)

"Non intervention in fatal illness becomes a self fulfilling prophecy." - Dr. John Bach

"The phrase is apt to cause disquiet. There have been those among us who have arrogantly judged, from a vantage point of power, the value of a human life. They have made decisions based on their assessment of a person's quality of life about providing supports to sustain that life. This attitude peaked in Nazi Germany, where such decisions were used as the basis for genocide. We like to think that we have moved well beyond this perspective, but important decisions about people's lives are still being made from positions of power. Such practice is difficult to combat, especially in a period when responsibility of government in the area of human and environmental services is being cut back."- Introduction by J. David Baker (Quality of Life in Health Promotion and Rehabilitation)

"The creative spirit is not indestructible, but a courageous few discover that when in hell, they are granted a glimpse of heaven."-Anthony Storr

"The opposite of Compassion is Indifference." - Jean S. Bolen MD

"He who preserves one soul is considered as if he had preserved a whole world." (Talmud, Sanhedrin, 37A)

"To serve, to strive and not to yield." - Outward Bound

"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.

"Throughout human history, as our species has faced the frightening, terrorizing fact that we do not know who we are, or where we are going in this ocean of chaos, it has been the authorities, the political, the religious, the educational authorities who attempted to comfort us by giving us order, rules, regulations, informing, forming in our minds their view of reality. To think for yourself you must question authority and learn how to put yourself in a state of vulnerable, open-mindedness; chaotic, confused, vulnerability to inform yourself. Think for yourself. Question authority."
-Timothy Leary

"Palliative care works with - not instead of - other treatments. It can start as soon as the family knows the child is ill. Palliative care does not mean "giving up." Good palliative care can help all seriously ill or injured children, not only those who are dying." -
When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families

"What, then, constitutes medical humanism? I would suggest four core values: First is the preciousness (or sanctity) of each human life. The second value is respect for human dignity. The third core value of humanism is the celebration of human diversity. Finally, the fourth core value of medical humanism is a sympathetic appreciation of the complexity of the human condition- how difficult it is for anyone to meet all of society's idealized expectations regarding individual and interpersonal behaviors, and how history and circumstances have conspired to make it especially difficult for some."~ The physician-scientist, the state, and the oath: Thoughts for our times Barry S. Coller

Our Weekly Shabbos Ritual!

Living and caring for a child with a terminal illness is not only about coping it's also about trying to find ways to keep strength and thrive during the greatest challenge of our lives.
Here is a video showing how Maxine, Shira and Sammy bake challah every shabbos. Shabbos is the jewish sabbath and the ritual around the Sabbath is full of light and joy and bonds our family close together. I can't express in words how much joy this little holiday from the world brings to our family every week. The video can be found by pressing on the link below.

http://www.youtube.com/watch?v=ad8axK3faKU&feature=player_embedded

Probiotics cuts intensive care infection

Probiotics cuts intensive care infection
Published: June 17, 2010 at 7:01 PM

OMAHA, June 17 (UPI) -- Ventilator-associated pneumonia in critically ill patients in hospitals was cut in half after probiotics were given to the patients, U.S. researchers say.

Lead author Dr. Lee E. Morrow of the Creighton University says ventilator-associated pneumonia affect an estimated 30 percent of patients who are hospitalized in critical condition.

Morrow and colleagues chose 138 critically ill patients from a single hospital to receive either placebo or probiotic therapy. Patients who received probiotic therapy got Lactobacillus rhamnosus twice daily.

The researchers find the daily use of probiotics not only decreased ventilator-associated pneumonia infections by about 50 percent compared to the placebo.

The study, plus a meta-analysis of existing studies, finds an overall reduction in ventilator-associated pneumonia of 39 percent with probiotics, suggesting a novel, inexpensive treatment, but more than 90 percent of patients in the intensive care unit were deemed ineligible for the study.

"Larger clinical trials



with more liberal inclusion criteria are needed to establish the effectiveness of probiotics and to allow for extrapolation to a larger at-risk population," Morrow says in a statement.

The findings are published online ahead of print in the American Journal of Respiratory and Critical Care Medicine.

Justifying My Existence - Daniel Silveria

Justifying My Existence - Daniel Silveria
Hollee J. Chadwick
Published September 18, 2009 by:
Hollee J. Chadwick
More: La House Movers La Movers Quadriplegic Daniel Pearl Plate Tectonics
I was born with Spinal Muscular Atrophy and, as a result, have been a quadriplegic for most of my 33 years. My mother didn't know prior to my birth that I would be afflicted with this illness. I was diagnosed when I was
two years old. There's no way of knowing if she would have decided to terminate the pregnancy had she known in advance that her child would be disabled; if she'd have been overwhelmed at the prospect of maintaining an extremely dependent individual with a severely compromised immune system and a questionable "quality of life."

The thing about life is that it's a zero-sum game. In order for one's quality of life to be examined and taken into consideration, one must first have a life. My basic thesis here is that I'm glad that I do. If I'd have been aborted it would've made this far more difficult to write.

So I'm writing this from the perspective of the unaborted fetus, a not at all disinterested third party in this third rail debate. There are compelling arguments on both sides of the issue. In fact, I'm pretty sure I would be accused of riding the fence, since, though I am in favor of choosing life, when it comes down to it, I am reluctantly pro-choice. This is because I'm very much a proponent of states' rights, as opposed to a collection of any-way-the-wind-blows politicians in Washington deciding what's best for Joe Schmo in Idaho. The brilliant P.J. O'Rourke once compared the concept to being married, saying you can argue with the people (your wife) all you want, but inevitably it's just going to be, "Yes dear," and let democracy have the final say.

However, I'm just as opposed to some uninformed "it's my body, it's my life" able-bodied activist deciding for me and my ilk that my life, such as it is, is expendable and essentially not worth living. "To be or not to be?" is my question, not yours.

Life is worth living. When reduced to its simplest capabilities, when merely existing and drawing breath while being able to contemplate the sensation of that breath, life is worth the ride. Give me liberty, but first give me breath. And I'm not the smartest being to ever not walk the face of the earth, but having the ability to think at all allows me to appreciate the richness afforded me by the five senses. I can watch the nightly news and marvel at the human condition and all its long winded shortcomings, ubiquitous brilliance, and interwoven storylines. Despite my condition, the beauty is not lost on me. The sights and sounds all around provide more than enough motivation to get me out of bed in the morning. And even when I can no longer get out of bed, I'll find a way to supply myself with word of the movers and shakers and what they're moving and shaking.

If I am one day reduced to a coma, visit me in my subconscious Shangri-La with a bottle of something expensive, and we'll raise a coma-toast. If I'm alive, I'm not unconscious. My heart still knows where to pump the blood, my immune system still knows where to find the bacteria cafeteria. Consciousness is precious beyond any words I could put here in support of it. To say nothing of the visceral realm, which is sometimes background music, but sometimes makes the little hairs on the back of your neck stand in awe. Maybe it's a consciousness higher than consciousness.

You might be thinking that someone like me develops an exceptionally fortified wall of denial as a defense mechanism. Da Nile ain't just a river in Egypt, after all. I don't see it like that, though. The game has merely been simplified for me by way of removing some of the extras, and appreciation of what is replaces focus from what is lacking. It's all relative. Somebody that most people would agree has ideal circumstances in their life might be absolutely miserable because their focus is intensely on the few things that they lack. So the opposite is often true of someone who might be perceived by the consensus as having less than ideal circumstances. I'm not saying that I constantly see the world through the lenses of rose-colored glasses. I visit the doldrums every now and then. But there's no shortage of people pounding the doldrums. Misery loves company, so pity parties are all the rage. There are human interest stories as far as the eyes can see, where the humans of interest have a tale of woe. And the more morbid the tale, the more spectators.

It seems we are obsessed with constantly reaffirming that life is not fair. I have a very profound response to this presumption:

Duh!

We hold this truth to be self-evident - and freakin' obvious. You're perfectly entitled to your childish notions of entitlement, but reality has a funny way of shaking the plate tectonics of your paradigmbag. How many times do we lab brats have to run into the electrified walls of "life's-not-fair" and still be shocked and amazed by the maze? Pearls of wisdom are produced the same way actual pearls are: via friction and time. I have been pearl-lyzed, hallelujah!

It's my belief that depression's primary cause stems from the expectations and entitlement mentality running headlong into the Truth Train.

The brutality of reality gives its brand of tough love to the unsuspecting gamer. We all have a predetermined timeline arranged in our minds as to where we're supposed to be at a given point in the midst of this mortal coil. Kind of a biological clock, but applicable to endless other rites of passage we presume to be part of the grand tour. "I should have 2.3 kids by the time I'm 30 years old;" "I should be able to retire by the time I'm 65;" "I should have a house in the Hamptons with a gardener, chef, and personal misuse who doubles as my doubles partner and caddie, and drives my Cadi while I'm in the back, swigging gin & Jack on the cell with my broker, who's got me stalks of stocks socked away all by the time I'm sprouting grey hairs."

"Happiness never lays its finger on its pulse." - Adam Smith

You see, we have midlife crises, earlylife crises, and end-of-life issues. But what we really have is a beautiful collection of priceless moments. Moments are in the I of the beholder.

Two years following my diagnosis, my mother got pregnant again. Strangely, some highly motivated organizations caught wind of this and swarmed down on her like vultures, offering advice and support in preventing such a horrible misfortune from happening again. Because, you know, my sit-uation is genetic and there was a good chance that history would repeat itself repeat itself. This time she knew the risks, and come hell or sick toddler, was perfectly willing to accept the results. Baby brother Andrew came nine months later, happy and healthy.

No group elected or otherwise should have authority over another individual's life or death, or in any way feel justified in evaluating that individual's quality of life or value to the tribe. Social engineering cannot be acceptable ever. No matter how many pretty euphemisms you try to pin to it.

You might look at me, and compared to the rest, assess what you see as flawed. Look closer you'll find a soul and a mind. I am a living expression of God.

Physical Therapy: Flexibility, Fitness and Fun

Physical Therapy: Flexibility, Fitness and Fun

Shira Receiving Beckman Motor Oral Therapy

Shira receives Beckman Motor Oral Therapy every day right after her CPT session in the morning.

Beckman Motor Oral Therapy Handout with Diagrams and Directions
http://www.asonginthisworld.com/images/client_pics/Beckman%20Motor%20Oral%20Therapy.PDF

Beckman Motor Oral Therapy Part 1
http://www.youtube.com/watch?v=KKxbexuV804

Part 2
http://www.youtube.com/watch?v=mY6ZujX-o_4

Part 3
http://www.youtube.com/watch?v=1-jMGPhJYrM

Part 4
http://www.youtube.com/watch?v=SGu9wCxE63g

The physician-scientist, the state, and the oath: Thoughts for our times

"What, then, constitutes medical humanism? I would suggest four core values: First is the preciousness (or sanctity) of each human life. The second value is respect for human dignity. The third core value of humanism is the celebration of human diversity. Finally, the fourth core value of medical humanism is a sympathetic appreciation of the complexity of the human condition- how difficult it is for anyone to meet all of society's idealized expectations regarding individual and interpersonal behaviors, and how history and circumstances have conspired to make it especially difficult for some."~ The physician-scientist, the state, and the oath: Thoughts for our times Barry S. Coller

Read The Full Paper Here: Top right hand corner full text pdf
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1578617/

A Day With The Ducks

Click on the link below to watch Shira's video

http://www.youtube.com/watch?v=z1ETv6qIPLU&feature=player_embedded

One of those weeks when you can feel yourself age

This week was another one of those weeks when you can feel yourself age. People look at you and say, “you look tired.” 2 weeks ago Shira started to get fevers off and on and by last Friday Shira was definitely sick. Last Saturday Shira crashed hard (lost her vital signs) from a mucous plug. There is always a fine line when working on a child in this type of emergency situation. These crashes are also known as extreme bradychardia. One minute you look at your child and they are smiling at you and the next minute there pupils are dilated and they are struggling with all their might to breath. If you don’t get your child breathing chances are by the time the emergency services show up at your door and start CPR or intubate your child they are going to have brain damage so I have made it a priority to become an expert at resuscitating Shira when in respiratory arrest.

I have heard enough stories and paid close enough attention to the bad experiences of other families with SMA Type 1 children to really put some effort into becoming proficient in resuscitating Shira. I haven’t had to give chest compressions to Shira because her heart has never stopped from these episodes but her saturation levels have reached into her 60’s for her heart rate and as low for her oxygen which is all very bad. You have to work fast and I have to say it’s terrifying watching your child slip away before your eyes. We have been to this place with Shira many many times and I know how she is going to die, I understand what it’s going to be like I just want to be there holding her in my arms. I don’t want to be away from her when this happens. When Shira was in respiratory arrest this time we worked on her hard and fast and there is a fine line as to how hard you can work on a child before you create other complications like vomiting. Unfortunately my over zealousness in this situation caused me to make Shira vomit which meant I had to quickly open her g-tube turn her on her side and deep suction her orally. So the poor kid was now in respiratory arrest and possibly aspirating vomit which can lead to bacterial pneumonia and serious complications and or damaged lungs and possible death. All us SMA parents are scared of the complications vomiting can bring. I stabilized Shira quite quickly but needless to say the poor girl was wiped out.

Shira’s saturation levels returned back to baseline of 100% for O2 but her heart rate was in the 160’s. We chose to stay home until morning so we spoke to the pediatric intensive care unit and told them we would hold off until morning and see how things go. The next day (I believe Sunday) Shira was on day 3 of fever and still had a very high heart rate. We didn’t want to chance the high heart rate was brought on by complications due to aspiration of vomit so we called the ambulance and headed into the PICU. The PICU was totally empty which is nice so we didn’t have to worry as much that Shira could contract other diseases. Shira was tested for Respiratory Synctal Virus (she had this at 6 months and 3 years of age and both times it was very very bad!) H1N1 and influenza A and B and all tests came back negative.

While in the PICU we also had a lot of blood work done on Shira to check how her diet was affecting her as well as her blood gases to check how well she was being ventilated.
It turns out Shira’s diet is spot on but she was over ventilated which was causing extremely low CO2 levels. We also have made arrangements to meet with an RT that will be bringing over a bunch of new bipap masks so we can replace the mask Shira has used since she was 6 months old.
While in the PICU we give Shira Chest Physio Therapy sessions every 4 hours or as needed around the clock; sleep deprivation torture won’t work on me anymore so if I get captured by extremists of some kind they will have to tickle me or something instead. While I hate to be in the intensive care unit with Shira I do enjoy the staff there and the support they give us is second to none! You get the full attention of 3 nurses and 1 doctor and there is no messing about it’s serious business in the PICU. We are very grateful to all of the staff and Dr. Jeff and Dr. Amanda (as Shira calls them). It’s a good feeling to have a team behind you that when things get at their ugliest you have a place to go and know Shira will be well taken care of. It’s amazing the work the PICU staff does on a daily basis, real life and death work!

So after 5 tiring days we are back home and thankful that our Sweet Pea is still with us, laughing, playing, singing. Shira teaches us how fragile life is and we give thanks for this life and time we have together as a family.

Sammy is doing well but the signs of stress are sometimes evident but all in all he is doing quite well. His teacher at school is an amazing person and very nurturing towards Sammy and what he has to live with and she gives him extra attention which we are so thankful for.

We are still downstairs as Sammy just has a nasty cough that isn’t going away and we just can’t take the chance that he might catch something else and spread it to Shira so we are down in Chez Shira for a while.

Shira is able to come off bipap now after his illness so today we went out for about an hour to get some fresh air and play with Sammy and some other kids at the park. “And that’s all I have to say about that.”

Shira Driving Her Power Chair Despite The Cold

Our Children. Our Gifts.

A new consciousness has permeated our household. Yesterday I changed Shira’s schedule. Shira used to go to bed at 10PM and wake around 9 A.M. and by the time she got off her respirator and all her physio was completed it would be around noon. I moved Shira’s schedule back by waking her at 7 or 7:30 A.M. Now Shira is waking at the same time as our 7 year old son Sammy and going to bed at the same time as he does. Shira feels so much older now that she is doing this. When it’s time for them to go to bed and we call out, “Ok kids it’s time for bed let’s get ready” you can see the joy in both of their faces. They are brother and sister, as one! The best thing about this time change is that it allows Shira and Sammy to spend much more time together. Shira used to be taking her Bipap (respirator) break the same time Sammy would get home from his after school activities which meant he had to be quite and I was unavailable because I was with Shira. Now Shira is finished with her bipap break by the time Sammy arrives home which means we can all play together.

Shira’s bath time is now at 5ish vs. 9 P.M which means Sammy can take part. I haven’t been in water with Sammy for quite some time but he really wanted to climb into the bath with us this evening. It was so beautiful and heart breaking to watch Sammy gently wash his sister and rinse her off. I washed Shira’s hair and Sammy rinsed her hair. Shira thought it was all quite amusing especially when I accidently raised her feet kicking Sammy in the head with Shira’s feet and being the little actor guy he is he sank under water. If you could only hear Shira’s laugh it is so gentle and sweet.

After the bath we continued playing in the living room. Shira was having a blast with her new Lion King Action set I found on Ebay for her. Sammy also loves it and wants one (the concept of sharing is a hard one to learn). The Lion King has taken over the household. Shira refers to me as Mufasa and I have to call her Simba; this goes on most of the day. The kids played for an hour and a half together with hardly any supervision accept for suctioning and position changes for Shira. Maxine and I sat in the kitchen just listening to them. Sam is such an amazing little boy. He is only 7 and he looks after his sister. He makes sure she has a toy in her hand, is comfortable, able to see everything he is doing and they talk sing, play make believe and interact deeply. Sammy is full of hugs and kisses for his sister and it just moves us so deeply to watch him and his gentleness.

At the end of play time it was fun to watch them argue over who gets to be Paul Stanley from Kiss. They ended their time together by watching some KISS videos on youtube. Shira has quite the will, she just does not give in to Sammy.

It took us so long to get to this place where our lives seem to be somewhat regular. More and more we witness our children playing effortlessly, without the boundaries of a life threatening disability and we wonder is this really happening to our family? They sound so “normal.” Without physically being in the same room with Shira you would never know she was as sick as she is except for her speech.

Every day Shira wakes up that day of life is a gift and every day we have Shira in our presence we are granted our greatest wish. I can only imagine what kind of man our son is going to grow up to be. I see this young boy love so deeply, strive for ways to understand her, touch and hold his sister so gently, communicate so deeply and all with no fear.

I know I don’t talk about our son as much as our daughter but I say it now, “We love you Sammy; you are amazing!”

Death, not disability, is the end of the world

I've been up since 5:30 this morning because the roof on our back porch has almost been torn off by the high winds here. In between going outside in the freezing cold and placing 10 lb weights on the roof to hold it down I've been doing a little research into quality of life and came upon this article. I have to say after I saw Million Dollar Baby I was left with a bad taste in my mouth. Because the movie was so well received without any critic about disability and quality of life shows what the general public thinks about the disabled. It's the old NIMBY or Not In My Back Yard approach to life. If I don't see it it's not my problem. Well we were a normal family before our daughter was born with a life threatening disability so I guess now were not normal. But as Groucho Marx said, "I don't want to join any club that would have me as a member!"

Death, not disability, is the end of the world
CBC News Viewpoint | February 03, 2005 | More from Disability Matters

This column will feature three writers, each with a different disability. They all have something to say about living with a disability and how they view awareness and attitudes toward disabilities in Canada. The column will deal with the rights of people with disabilities, eliminating inequality and discrimination, and issues of self-help and consumer advocacy. Our plan is to rotate among our columnists to have a new column each month.
Ed Smith Ed Smith is a retired educator and full-time writer. His humour column runs in several papers and magazines and he has had eight books published. He has been quadriplegic since 1998. Ed lives in Springdale, Nfld.


Clint Eastwood just lost me as a fan, something I'm sure will keep him awake nights.

His latest movie, Million Dollar Baby, has won praise from everyone who's seen it, and perhaps a few who haven't. As a person with quadriplegia I see it as nothing more or less than a scurrilous attack on people with spinal cord injury specifically, and those with disabilities generally.

A couple of years ago I gave a keynote presentation to a conference on disabilities. It was meant to be an upbeat and "go get 'em" type speech and from the standing ovation at the end it seemed I had succeeded admirably. Less than an hour later one of the delegates to the conference (we'll call him Jack) button-holed me in the hotel lobby. He looked me up and down and then spoke in confidential tones.

"When I see you now," he said, "and remember what you used to be like, I think 'twould be better if you were dead."

Jack and Clint would have hit it off well. Million Dollar Baby, which Eastwood both directs and stars in, is the story of a fight manager with a promising young boxer. The fighter gets a spinal cord injury in a fall and at her request the manager (Eastwood) kills her as she lies in a nursing home. The film will likely win all kinds of awards.

Not from me, even if I had them to give. Eastwood has hardly been a friend of people with disabilities. He was sued in 1997 for refusing to include $7,000 worth of accessible bathrooms in his $6.7-million resort renovations. Caring chap, Clint.

So it's what the boxer wanted, right? It's what I wanted, too, when I discovered I was paralysed in almost 90 per cent of my body. I pleaded with my wife to have me shot or put down in some merciful fashion. At the time, I didn't even care if it was merciful. That was for the first two days. Now, six years later, I'm rather glad she didn't.

Actor Christopher Reeve had a similar experience. So did many people I know who have suffered from catastrophic injury.

Incredibly, a preponderance of the population, even in our "enlightened" Canadian society, agrees with Jack that we're better off dead.

Some years ago I did a short editorial segment for CBC radio in which I defended Robert Latimer's second-degree murder conviction for having taken the life of his multiple handicapped daughter Tracy. I disagreed strongly with those who wanted him pardoned and set free. The producers told me later that calls and e-mails were running five to one against my position.

It's no fun being quadriplegic. We have to battle attitudes that believe us to be incapable of speaking for ourselves, unworthy of any accommodation of our physical needs, and something less than "normal." We wait in the snow or the rain outside hotel and restaurant doors that don't have automatic openers, hoping some kindly soul will see us and come running before we perish. We endure while waitresses and store clerks talk over our heads to our spouses or caregivers about what kind of pie or size shirt we want.

We get stuck in cubbyholes in the back of theatres and movie houses. I have almost been physically attacked while asking an able-bodied motorist to remove his vehicle from a handicap parking space so we could get close to an entrance.

While I was in a rehabilitation centre in Toronto my wife called several churches to see if they were accessible. Perhaps we chose the wrong churches or the wrong denominations or the wrong religions. She didn't find one that wouldn't have put me at the front of the church to be stared at, or in the middle of an aisle to be an obstruction.

Despite all this, the vast majority of spinal cord injured persons have a good quality of life. We have family and friends, hobbies and pursuits, occupations and pleasures. Life has changed irrevocably, but it has not become a hell so tormenting that we'd be better off dead. On good days it's downright bearable!

Million Dollar Baby sees no opportunity for any quality of life with spinal cord injury. Its premise is that unless you can walk and/or use your hands your life has no value.

I know several people with quadriplegia who swear up and down that they are really happy. Some of them have even said they're glad they had the accident because it changed their lives for the better. A friend who is also quadriplegic assured me not long ago that he didn't have a complaint in the world.

Although we all admired Christopher Reeve for many reasons, some of us had problems with his obsession that the only goal in life worth pursuing is to walk again. That just isn't going to happen for many of us so we get on with the task of making a contribution to our community in whatever way we can, and being as happy as the next person while doing it.

Being physically disabled is no picnic, God knows. But, Clint and Jack, it isn't the end of the world.