Tuesday, December 29, 2009

CanAssist Swing-Enabling System






Shira Fisher loves the thrill that comes from soaring through the air on a swing.


The four-year-old girl first tasted the freedom of swinging when her dad rigged a special swing for her in the backyard of their Victoria-area home. But because Shira has Spinal Muscular Atrophy, a genetic disorder that has severely affected her muscular development, she has never been able to swing anywhere else.

Shira longed to be able to swing alongside other children at some of the numerous parks in her neighborhood. While there are swings on the market for children with disabilities, none worked for Shira and could be attached and removed from a standard park swing.

"Shira's father, Brad, had an idea of what he wanted," recalls Brandon Fry, an engineering co-op student at CanAssist who was assigned to work on the request. "He already had a supportive seat designed for kids with special needs. He asked us to modify it so it could be attached easily to any park swing."

Brandon attached a seatbelt-like system to the back of the store-bought Tumble Form Chair. The chair's firm foam material safely supports a child in a reclined position, an important consideration for Shira. Then Brandon added a metal back support with two metal rods that link at both ends to a swing's two chains.

When Shira and Brad met CanAssist staff at a local park, Shira was so anxious to begin swinging that she was almost in tears. Being four, patience is not a readily available virtue at this point. But once Brandon buckled her into the new device, Shira was humming softly and smiling brightly.

"She wanted to get on it pretty quickly," says Brandon. "And once she was in, she wanted to go higher and higher."

Apparently Shira is a real adventurer, much to the chagrin of her protective dad.

Shira stayed and swung while the CanAssist crew packed up to go. Finally able to swing just like other kids, she didn't want her first adventure in the park to end too soon.

"Some people wish they could fly, some people wish they could simply swing," Shira's dad wrote to CanAssist later. "CanAssist made my daughter's wish to be able to swing with other children in any park come true. Thank you CanAssist."


Brandon ensures the seat
attaches securely to the swing. Shira's father, Brad, gives
Shira a push.

Tuesday, December 22, 2009

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!”

Sunday, December 6, 2009

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.

Tuesday, November 24, 2009

Beckman Oral Motor Therapy-Sometimes It All Comes Together

A few months ago I discovered a new oral therapy while reading through posts on http://www.smaspace.com The therapy is called Beckman Oral Therapy http://www.beckmanoralmotor.com/. Because SMA Type 1 patients get jaw contractures and have very limited range of motion in their jaws I have always been concerned about what the future holds for Shira's ability to keep speaking. I knew I had to take some kind of action before it was too late and this video appeared http://smaspace.ning.com/video/romansspeech-therapy-oral Today the head speech pathologist came over to improve the techniques I had learned by watching the video. I will post a video soon as well as the instructions I received from Phil Harmuth on Beckman Oral Therapy. I can't say enough about Shira's progress from our daily Beckman routine. Shira's jaw has more movement than ever before and she can actually seperate her upper and lower jaws. If you aren't already performing oral therapy on your child I strongly suggest doing some form of oral therapy to help prevent contractures and keep some range of motion in the jaw. This therapy also has relieved a lot of pressure in Shira's face. Sometimes everything just comes together and this is one of those days. Thanks Phil Harmuth and the Queen Alexandra Centre!

Wednesday, November 18, 2009

2 Great Books By Christopher Reeve--Advocacy


"So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable. If we can conquer outer space, we should be able to conquer inner space too--the frontier of the brain, the central nervous system, and all the afflictions of the body that destroy so many lives and rob our country of so much potential."

While Christopher Reeve did not suffer from a degenerative disease his catastrophic accident which left him a quadriplegic and vent dependent changed his life forever. Christopher Reeve's insight into living with paralyzes and how it effects your life is profound. Christopher wrote 2 books and I strongly suggest everyone read them as they give great information on family dynamics, hope, and the books are heavily weighted on advocacy. Without Chistopher Reeve stem cell research wouldn't be where it is today as he really increased funding for stem cell research as well as political will to a whole new level while he was alive creating the environment or stepping stone for scientists today.

Christopher Reeve "Still Me": This book deals with Christopher before and after his accident. This is his first book and obviously an inspirational story of his entire life. You get an eyeful of his child hood through adult hood, his injury, emotional and physical trauma and how he rebounded into one of the most effective advocates for the disabled in the United States ever!!

Christopher Reeve "Nothing Is Impossible": This is a must read for us advocates!!! The book is not deep but it goes into Christopher's thought process's one goes through after a catastrophic diagnosis or injury:
1) The First Decision
2) Humor
3) Mind/Body
4) Parenting
5) Religion
6) Advocacy
7) Faith
8) Hope
Christopher Reeve was an avid sailor and the lighthouse does not have religious meaning here. Here is an excerpt from his book:

"When the unthinkable happens the lighthouse is hope. ONce we find it, we must cling to it with absolute determination, much as our crew did when we saw the light of Gibb's Hill that October afternoon. Hope must be as real, and built on the same solid foundation, as a lighthouse; in that way it is different from optimism or wishful thinking. When we have hope, we discover powers within ourselves we may have never known---- the power to make sacrifices, to endure, to heal, everything is possible. We are all on this sea together. But the lighthouse is always there, ready to show us the way home."

Monday, November 16, 2009

4 year-old Shira Fisher is terminally ill in the news

CLICK ON ME TO WATCH VIDEO OF NEWS CAST

VICTORIA - 4 year-old Shira Fisher is terminally ill with Spinal Muscular Atrophy or SMA. Her parents were told she had months to live, when Shira was first diagnosed four years ago. But the young girl continues to defy the odds.

Her parents, Brad and Maxine, have become advocates for Shira and other SMA kids. Last week, they were told their application to get Shira a vaccine to fight out RSV (a virus that attacks the respiratory sytem) was denied. Shira has twice beeen hospitalized with RSV and both times nearly died.

Her parents believe the vaccine can keep Shira out of the intensive care unit this winter. The Fishers contacted A News and within 48 hours, BC Children's Hospital announced its vaccine protocol for the province would include children with SMA who are under 15 kilograms. Shira now qualifies and was given her first set of anti-RSV shots today.

The Fishers believe Shira's original rejection was over money - the vaccine costs about $8,000 and they worry about other families with special needs children won't fight the system to ensure quality care.

Wednesday, October 7, 2009

Shira Swings On Her Converted Tumbleform Chair


"A girl, my daughter. She is a being more rare, more beautiful, purer,
more perfect and more delicate than the wildest dream of a poet. I can
never believe her to be my own flesh and blood. Her beauty is a
well-spring of purest water-of-life, and t...o look upon her is to drink
and drink and drink again.......

She is rare, a perfect creation, a work of purest art. A delicate
flower that bloomed in the liquid light of the moon. A nature not of
this world, a personality like that of some biblical maiden, gracious
and queenly. I find it difficult to believe her my own........"

-Excerpt from the book The Invisible Man by Ralph Ellison but I changed it to present tense!

Click link below to watch Shira swing!!

CLICK HERE

Friday, September 25, 2009

Letter Warns About Tricky Dosing With Liquid Tamiflu for Kids

Letter Warns About Tricky Dosing With Liquid Tamiflu for Kids
Published: Friday, September 25, 2009 | 6:45 AM ET
Canadian Press

(HealthDay News) - Doctors warn that parents across the country could give the wrong dose of Tamiflu to their children as treatment for the H1N1 swine flu because the dosing instructions don't always coincide with the measurement markings on the syringe that comes with the liquid medication.

The warning letter, penned by scientists from Northwestern University Feinberg School of Medicine in Chicago, Emory University in Atlanta and Weill Cornell School of Medicine in New York City and published online Wednesday in the New England Journal of Medicine, also urges doctors and pharmacists to be on the lookout for this potential dosing mismatch and to help parents figure out exactly how much Tamiflu to give their child.

The authors cite a case that they say is probably happening all over the United States: The parents of a 6-year-old girl diagnosed with the H1N1 virus received a prescription for Tamiflu Oral Suspension that told them to give her three-fourths of a teaspoon of the medicine two times a day. However, the dosing syringe inside the box was marked in milligrams. The confused parents, both of whom are health professionals, had to figure out how to convert the measurement, something most parents would find too daunting to do.

"It's an egregious error that there is a conflict in the prescription labeling instructions and the dosage device that comes in the exact same box. It's incredibly confusing to parents," letter co-author Michael Wolf, an associate professor of medicine and learning sciences at Northwestern University Feinberg School of Medicine, said in a news release from the university. "Tamiflu is one of the main courses of treatment right now for H1N1, and it is being widely used among children, even infants."

The letter's authors recommend that all pharmacies and physicians be instructed to ensure that the prescription label instructions for use are in the same dosing units as those on the measurement device.

"Parents being prescribed Tamiflu for their children need to make sure they understand exactly how to take it at the time they pick it up at the pharmacy," lead letter author Dr. Ruth Parker, a professor of medicine at Emory, said in the release.

Wolf warned that an overdose could be toxic, and an underdose could be ineffective.

And even more complex calculations might be necessary now that the U.S. Food and Drug Administration has approved Tamiflu for off-label use among children under the age of 1, because the syringe doesn't include small enough measuring increments for these youngest patients.

"We need to have a better system for ensuring there are standardized directions for administering drugs to children," letter co-author Dr. Alastair Wood, a professor of medicine and pharmacology at the Weill Cornell School of Medicine in New York City, said in the news release. "We need to move to a system where all doses are given in the same units, preferably milliliters."

Meanwhile, a report released Thursday supports recent U.S. Centers for Disease Control and Prevention recommendations not to use negative rapid test results for management of patients that may be infected with the pandemic swine flu virus.

Researchers in Connecticut assessed the performance of the rapid influenza diagnostic test (RIDT) used during outbreaks of pandemic influenza A (H1N1) at two schools in Greenwich in May 2009. Of the 63 people tested at Greenwich Hospital, infection was confirmed in 49 patients.

The results of the RIDT were compared with the reverse transcription-polymerase chain reaction assay. A low sensitivity of 47 per cent was found for the rapid test. This poor performance couldn't be explained by the clinical features of the patients or by the timing of the specimen collection, said Dr. James R. Sabetta, of the Greenwich Department of Health and the Connecticut Department of Public Health, and colleagues.

While a positive rapid test for influenza is helpful, a negative test doesn't rule out pandemic swine flu, the researchers said.

The report appears in the Sept. 25 issue of the Morbidity and Mortality Weekly Report, published by the CDC.

More information

The CDC has more about http://www.cdc.gov/h1n1flu/ H1N1 flu.

SOURCES: U.S. Centers for Disease Control and Prevention, news release, Sept. 24, 2009; Northwestern University, news release, Sept. 23, 2009

Copyright 2009 ScoutNews, LLC. All rights reserved.

Wednesday, September 23, 2009

Seasonal flu shot may increase H1N1 risk: early data

Seasonal flu shot may increase H1N1 risk: early data
Last Updated: Wednesday, September 23, 2009 | 4:01 PM ET Comments0Recommend1
CBC News

Preliminary research suggests the seasonal flu shot may put people at greater risk for getting swine flu, CBC News has learned.

"This is some evidence that has been floated; it hasn't been validated yet, it's very preliminary," cautioned Dr. Don Low, microbiologist in chief at Mount Sinai Hospital in Toronto.

"This is obviously important data to help guide policy decision. How can we best protect people against influenza?"

It's important to validate the information to make sure it's not just a fluke, and that the observation is confirmed elsewhere such as in the Southern Hemisphere, which just completed its seasonal flu season, Low added.

The four Canadian studies involved about 2,000 Canadians in Ontario, Quebec, British Columbia and Alberta, sources told CBC News. Researchers found people who had received the seasonal flu vaccine in the past were more likely to get sick with the H1N1 virus.

Researchers know that theoretically when people are exposed to bacteria or a virus, it can stimulate the immune system to create antibodies that facilitate the entry of another strain of the virus. Dengue fever is one example, Low said.
No seasonal flu shot?

The latest finding raises questions about the order in which to get flu shots.

Across Canada, public health authorities are fiercely debating the idea of shortening, delaying or scrapping their seasonal flu vaccination campaign in favour of mass inoculation against H1N1.

The main reason is because the H1N1 may be dominant strain of influenza circulating when the fall flu season hits, meaning it could be a waste of time and resources to mount a seasonal flu vaccine campaign.

Health authorities in Quebec say they might scrap or delay seasonal flu shots and carry out mass vaccinations against just the H1N1 swine flu virus instead. In the meantime, the province has paused the launch of its seasonal flu shots.

"For the moment, it's on hold," Karine White, a media relations liaison with Quebec's Ministry of Health and Social Services, told The Canadian Press.

"You can imagine the people over the age 65 who are relatively protected against H1N1, it may make perfect sense for them to get the seasonal vaccine. People who are younger than that, if we don't see a lot of seasonal flu, probably the pandemic vaccine's the way to go. But we're going to make that crystal clear to people," said Dr. Michael Gardam, director of infectious diseases prevention and control at the Ontario Agency for Health Protection and Promotion.

Seasonal flu could appear after Christmas, said Dr. David Scheifele, director of the vaccine evaluation centre at B.C. Children's Hospital in Vancouver.

'39 Pounds of Love' star dies at 41

Click to Print
The Jerusalem Post Internet Edition

'39 Pounds of Love' star dies at 41
Sep. 22, 2009
Brian Blondy , THE JERUSALEM POST

Ami Ankilewitz, the subject of an award-winning documentary who braved a debilitating illness for 41 years, finally succumbed to it on Sunday.

Ankilewitz was born with Spinal Muscular Atrophy - an extremely rare and often fatal condition that limits physical growth and movement.

Despite a prediction from a doctor that he would live for only six years, Ankilewitz continued to survive and succeed. Due to his medical condition, he weighed only 39 pounds (17.7 kg.) as an adult and had use of only one finger during his life.

In 2005, Dani Menkin directed the documentary about Ankilewitz titled 39 Pounds of Love.

The documentary centers on Ankilewitz's quest across America to make peace with his brother and confront the doctor who predicted his early death. Along the way, he visits the Grand Canyon and rode a Harley-Davidson motorcycle, one of his life's dreams and passions.

The film won the Best Documentary category at the Ophir Awards given out by the Israeli Academy of Film, and at the Palm Beach International Film Festival. It was also screened in the United States to critical praise.

Ankilewitz continuously strived to live an active, normal lifestyle despite his immobility. In recent years, he drove an Alfa Spider convertible, became an outstanding handgun target shooter and even tried to join the IDF. He enjoyed going to bars and clubs, travelling and having "the time of his life" with his friends.

"I think a person like me would have much more motivation... for the simple reason that it would be much more important for me to prove that I could be as efficient as everyone else," Ankilewitz wrote on his personal Web site.

With his index finger, he was also an avid 3D animator, creating computer animation to tell his personal stories of love.

And it was love that was at the center of Ankilewitz's life.

"For me it [love] is more than just a word. It is the essence of our existence," he once said.

Throughout his life, Ankilewitz viewed his disability as an advantage.

"I'm lucky that I am what I am," he said. "I rephrase to myself as a 'what' for the simple reason that science hasn't yet found a definition for me that would be suitable in my mind. It could have been worse. I could have been 'normal.' I have the freedom to be whoever I want. I do not think people should look at me as a hero. Instead, they should think of themselves and put themselves in my position and think what other options do I have. It's either live or die, and I chose not to die."

In remembrance of his life, 39 Pounds of Love was shown in Tel Aviv on Tuesday night. His funeral was held at Kibbutz Givat Hashlosha, east of Petah Tikva, on Sunday night.

Sunday, September 20, 2009

Shira Goes Riding For Her First Time

video
Shira was turned down as a good candidate by the Cowichan and Vancouver Island Riding For The Disabled Associations. Their policies and candidate requirements are very limited here and don't serve the majority of disabled people. Upon further investigation I interviewed more people turned down by the Associations than those that get to ride. Purely psychological reasons for riding and the joy of riding are not criteria to be accepted into the program. Sometimes these programs are more of an ego boost for the people that run them than they are programs for the disabled and what it can mean for the person riding. Luckily I can ride and have researched enough so that my wife and I could take Shira riding and give her the joy and experience of riding horses. During Shira's ride she didn't stop saying, "Yeehaw, Yahoo" and when the ride was finished she exclaimed, "I Win!" You win Shira you munchkin and Sammy you are a great big brother and good rider!!

Monday, August 17, 2009

Our Beautiful Day



Lately we have all been having a really great time. Shira is changing in leaps and bounds developmentally. Our days are filled with walks, therapy, play dates, beach time, walks in the woods and up the mountain, watching videos, taking walks in the stander. Today was an especially wonderful day. Have you experienced those days when you do a wide variety of activities, unplanned and it was totally effortless? Today was one of those days a day of total synchronicity. After caring for Shira all night and getting little sleep I was surprisingly full of energy this morning. Shira was in a great mood and Sammy was full of beans not wanting to do his home work. It’s not that Sammy is behind in his studies it’s just that we want to keep his mind engaged so that when he returns to school everything will be second nature rather than relearning what he learned last year. Every day Sammy surprises us with what he figures out on his own on the computer or around the house by reading and following directions. I have to say that the only struggle of the day was getting Sammy to sit down and do his math, reading and writing exercises but he did it and the day moved on from there. Sammy attended gymnastics camp today from 1-4pm and he’ll be there all week. Shira and I hung around the house playing, practicing letters and pre reading, singing songs and playing. Maxine was out in the morning working at an assisted living home doing her music therapy with a group of seniors. So it was Sammy, Shira and I at home which can sometimes be challenging but today was a joy. We interviewed a potential employee for nights and tomorrow we will be training her and trying her out for a couple of days to see if she can care for Shira. Our help is really here to support me in shira’s care and I don’t expect any of them to perform any emergency procedures on Shira or even put her on bipap or suction her at night. I have found that while its easy to teach someone how to perform most of Shira’s care I can’t teach them what to do when Shira crashes and this is why I am always close at hand!

The afternoon was wonderful. Maxine spent a few hours with Sammy and Shira singing and playing and then Sam went over to the neighbours behind us to play with their son. I had a nap and Maxine and Shira sang and danced. Shira has really taken to her stander lately more than her power chair. Shira loves to stand up and walk around the neighbourhood in her stander. I’m used to seeing Shira in the device but I’m sure she looks like quite the site coming down the road. I had better wheels and handles put on our stander so we can get out and about in it. It is a little awkward so smooth roads work best with it. Shira loves to be spun in it! We went out for about an hour and a half walk in the stander tonight which is a feat for Shira. Us regular people take standing up for granted but SMA kids have to be braced to stand up and their bodies compress with gravity because of their lack of muscle.

We walked by one of Sam’s friends grandmother’s house from school. The grandmother always takes her grandson to school so Sammy knows her. We rang the door bell and she came out and I told her Sammy wanted to come by and say hello. She held out her arms and Sammy walked up and gave her a great big hug! Then Sammy introduces Shira saying, “this is my sister Shira.” He is so proud to have a sister! I’m so proud of my son. Sammy is such a collected centered person with so much confidence! He has such a big soul. So tomorrow Sammy is going over to her house for a play date with her grandson from 10-12 before he goes to camp.

We then walked over to the park and played there for about 20 minutes because it was getting late. On the way back home from the park Sammy starting begging to be carried on my shoulders but I can’t carry him that way when pushing Shira in her stander because it’s a two handed job. You would think the poor guy was severely injured the way he was walking and begging to be carried and a woman I didn’t know was walking up behind him going I don’t know you and I’m going to chase you which got him moving. She was saying watch out for the crazy lady in the big floppy hat. She seemed decent enough and Sam caught up to me quickly!

About a block from our house a neighbour we met while picking blackberries the other day runs over to us and hands us a plate of home made blackberry tarts which were fantastic! It was late when we got home and I removed Shira from her stander we went into the living room to watch Maxine and Sammy dance free form to some beautiful Israeli singer. Sammy can really move and Maxine and Sammy were taking turns mirroring each other. Maxine has had a lot of training in Dance and it was really beautiful and moving watching her and Sammy dance together. Sammy takes it very seriously and has no inhibitions what so ever. Sam is really into Michael Jackson and the Lion King which he just saw on Broadway in NY a couple of weeks ago. The boy is seriously artistic! After the show we performed Shira’s chest physio, Maxine gave Shira a bath, then bipap and bed and that was our day.

Thursday, August 13, 2009

Ventilation After Breathing Tube Removal May Alter Outcomes

Ventilation After Breathing Tube Removal May Alter Outcomes
Published: Thursday, August 13, 2009 | 7:15 AM ET
Canadian Press
(HealthDay News) - People with chronic respiratory disorders who receive early non-invasive ventilation after a breathing tube has been removed are less likely to suffer respiratory failure or die, a Spanish study has found.

The study included 106 people on mechanical ventilation. All of them had high levels of carbon dioxide in their blood, a condition known as hypercapnia. After their internal breathing tubes were removed, in a procedure called extubation, 54 people received non-invasive ventilation for 24 hours and 52 were given conventional oxygen treatment, the according to the study.

Respiratory failure after extubation occurred in 15 per cent of those who received non-invasive ventilation and in 48 per cent of people given conventional oxygen therapy. Non-invasive ventilation was associated with an 83 per cent decreased risk for respiratory failure after extubation, the researchers found.

They also found that the death rate after 90 days was much lower among people in the non-invasive ventilation group (11 per cent) than among those who received conventional oxygen therapy (31 per cent).

"Early non-invasive ventilation after extubation diminished risk of respiratory failure and lowered 90-day mortality in patients with hypercapnia during a spontaneous breathing trial," concluded Dr. Miquel Ferrer, of the Hospital Clinic of Barcelona, and his research colleagues. "Routine implementation of this strategy for management of mechanically ventilated patients with chronic respiratory disorders is advisable."

The study appears online this week and in an upcoming print issue of The Lancet.

More information

The U.S. National Women's Health Information Center has more about http://womenshealth.gov/faq/lung-disease.cfm lung disease.

SOURCES: Kathryn Schmitz, Ph.D., M.P.H., associate professor, epidemiology, University of Pennsylvania, Philadelphia; Wendy Demark-Wahnefried, Ph.D., R.D., professor, department of behavioral science, University of Texas MD Anderson Cancer Center, Houston; Aug. 13, 2009, New England Journal of Medicine

Monday, July 20, 2009

Time Flies When Your Not Having Fun

The past few days have been tough. On Saturday night at 1:30 in the morning Shira’s SAT level crashed. I was in a deep sleep with the monitor beside me but as you all know I sleep with one eye open and both ears on alert. I flew out bed and into Shira’s room and she was not doing well! I started frantically working on her performing CPT and using cough assist. Shira’s mucous was thick like glue but clear so the first thing that went through my mind was she might have RSV (Respiratoy Synctal Virus) again. I kept working on her with Maxine hooking up the oxygen to the ambu bag so we could give Shira some restful breaths with O2 in between the chest physio and cough assist. Once I got Shira stabilized I looked at the clock and it was 2:10 a.m. The time flies by when you are so focused trying to make your child breath on their own. You work and work and work on them while you watch them slip away then come back, then slip away then come back. I was just telling Maxine that day that I needed to de stress a bit and relax then that night Shira crashes.
Once I got Shira stabile I started listening to her lungs with the stethoscope and her lower left lobe sounded like a door on really creaky hinges. When I turned Shira onto her right side with her left in the air she did not do well and I immediately turned her to her opposite side. Usually I would stay home after removing a mucous plug but the creaky lung coupled with her desating while on bipap made us go in for an x-ray and cultures to make sure Shira wasn’t sick! I was so focused on Shira while working on her I didn’t realize Maxine had called the ambulance. Once the ambulance arrived it was the same old questions as to what Shira has and how it affects her etc. which I don’t have time to go into. Maxine and I are gong to send some information to the ambulance service and see if we can educate them a little. I am thankful they sent an ambulance with power this time even though we travelled on our battery back up system.
Once we arrived at the hospital we had to go into the ER where our Dr. met us to check Shira out. By this time Shira was in a great mood but not able to come off bipap without crashing so we decided to stay until morning. We were moved into a room of our own in the ER (thank g-d). Shira was hilarious calling out to our nurse Craig, “Craig, where are you, help me Craig!! I think the ER enjoyed having Shira there as a welcome break from all the adult problems they have to deal with.
All of you know how we try and bypass the ER because of germs and go straight to the pediatric intensive care unit and get placed directly in an isolation room to avoid germs; well I was freaking out washing down the room and everything. We had a wonderful night in the ER listening to a woman scream out in pain for 5 hours straight and people vomiting endlessly. I was nothing less than horrified that Shira will catch something.
In the a.m we were moved up to the PICU and into an isolation room. All of the tests for influenza and RSV came back negative and after the consultation with the nurses and doctors we determined that Shira was dehydrated. Shira’s food was put on continuous which cut the rate in half and I started adding more water and she started to recover! It was great seeing everyone in the PICU but of course we prefer running into our nurses and doctors around town rather than in the hospital! We arrived back home at around 3:30 and Maxine let me sleep for a couple of hours as I was up giving Shira her treatments in the hospital through the night while her secretions were starting to loosen up.
I made good use of our time in the hospital this time having our dietician weight Shira, measure her and perform a skin fold test on her. Shira is doing well nutritionally and still growing well! I have plans to have a DEXA Scan done on Shira and with those results see if we can optimize her diet further based on our findings. I’m also arranging for Shira to be looked at by the department of physiology at the University of Victoria and have extensive testing on her physical make up done there also to cross reference with the other tests done on Shira. I really want to understand Shira’s physical makeup and take her nutritional requirements to the next level by being able to deliver nutrition based on more science rather than a lot of conjecture. So while it is always a horrible and very stressful experience dealing with plugging and desat episodes we used our time well in the hospital and got out of their as quickly as possible!

Thank you for all the thoughts and prayers it really helps knowing so many are behind us when the going gets tough!! Brad and Maxine.

Thursday, July 16, 2009

Sammy Is Fundraising Please Give!!


Hello everyone. Our son Sammy is helping to raise funds for Chai Lifeline an organization that helps terminally ill children and their families. Camp Gan Israel the camp Sammy is attending is holding a jump a thon where the kids do jumping jacks to raise money for sick kids. Please sponsor Sammy as this is a front line organization that truly helps families and children in crisis when they are dealing with Life Threatening Illness; we know, they have helped us tremendously! Please give what you can by going to Sammy’s Chai Lifeline Web Page and donating here http://www.chailifeline.org/chai-a-thon/mypage.php?myid=2325 !!!! Thinking of all of you! Brad.

Tuesday, July 7, 2009

U.S. stem cell funding rules finalized

U.S. stem cell funding rules finalized
Last Updated: Tuesday, July 7, 2009 | 8:54 AM ET Comments4Recommend3
The Associated Press
New rules unveiled Monday allows for research on older stem cell lines to qualify for U.S. government funding.New rules unveiled Monday allows for research on older stem cell lines to qualify for U.S. government funding. (Paul Sancya/Associated Press)

The U.S. government issued final rules Monday expanding taxpayer-funded research using embryonic stem cells and easing scientists' fears that some of the oldest batches might not qualify.

The administration under former president George W. Bush had limited taxpayer-funded research to a small number of stem cell batches, or lines, already in existence as of August 2001.

Current President Barack Obama lifted that restriction in March, potentially widening the field — there now may be as many as 700 stem cell lines around the world — but letting the National Institutes of Health set its boundaries.

But the final rules issued Monday settle a big question: Would new ethics requirements disqualify many of the stem cells created over the past decade, even the few funded under the Bush administration's tight limits?

The NIH came up with a compromise, saying it deems those old stem cell lines eligible for government research dollars if scientists can prove they met the spirit of the new ethics standards. Further, NIH will create a registry of qualified stem cells so scientists don't have to second-guess if they're applying to use the right ones.
'A reasonable compromise'

"We think this is a reasonable compromise to achieve the president's goal of both advancing science while maintaining rigorous ethical standards," acting NIH director Raynard Kington said Monday. "We believe that judgment is necessary."

He wouldn't speculate on how many old stem cells ultimately would qualify, but scientists welcomed the change.

"I expect that most existing lines will be found to have been ethically derived," said Dr. Sean Morrison, director of the University of Michigan Center for Stem Cell Biology. "This will eventually make hundreds of new stem cell lines available for use."

Researchers hope that embryonic stem cells — master cells that can morph into any cell of the body — can be harnessed to one day create better treatments, maybe even cures, for ailments ranging from diabetes to Parkinson's to spinal cord injury.

Culling those stem cells destroys a days-old embryo, something many strongly oppose on moral grounds. Once created, those cells can propagate indefinitely in lab dishes.

Federal law forbids using taxpayer money to create or destroy an embryo. At issue here are rules for working with cells that initially were created using private money.

NIH sifted through 49,000 comments from the public in finalizing the rules, which take effect Tuesday. The draft changed little, as stem cells created solely for research in whatever manner, including cloning, won't qualify.

Monday, July 6, 2009

Diet and Advocacy Spinal Muscular Atrophy. Use this to fight for your kids health!! CDC Growth Charts for Children with Special Health Care Needs.

http://depts.washington.edu/growth/cshcn/text/page1a.htm


The CDC Growth Charts for Children with Special Health Care Needs.

Diet is one of the main factors of an SMA patients daily therapies. Without good nutritional support SMA patients don’t thrive well. Diet creates a lot of problems in our doctor patient relationships also because there is so little information as to how diet affects SMA Patients. Doctors hold fast to conventional wisdom and the BMI index when calculating an SMA patients needs.

The above site will steer you health care professional, doctor, nutritionist in the right direction. I suggest carefully reading this site, copying it into hard copy and saving the link in case you need it to train your health care provider as to your childs special needs!

Here is a quote from Section 5 of the site:

“ in bone size and fat and muscle distribution make the use of the reference data for many estimators of body composition inappropriate for many children with special health care needs. For example, BMI-for-age may not identify overweight in some children who are "overfat" because of decreased muscle mass.
Since the body composition of a child with special health care needs may differ from that of the reference population, skinfold measurements, along with BMI-for-age, may provide additional critical information about a child's body composition. This information can be useful for monitoring changes in an individual's body composition and growth pattern.”
When it comes to diet health care professionals just guestimate and I say its time for them to start taking notice and performing skin fold tests etc to more accurately come to conclusions and recommendations!
I hope you have found this information useful! Brad.

http://depts.washington.edu/growth/cshcn/text/page1a.htm

Monday, June 29, 2009

Shira's 4th Birthday Party Video

video

What a day. Today was Shira’s birthday party. For several days we have been preparing for the party. Our good friends Marie and Kenny dropped off some table and chairs for us to use yesterday. Sammy also helped me clean up the yard, put away all the toys/pieces of toys and other assorted pointy dangerous items laying around. This morning we all woke up early with excitement. My mother arrived at the house at 7:30 and started preparing her famous fruit platters, lox and bagels, etc. etc. Our friend Marie came over around 10 and did a great job putting up decorations. The weather started off with heavy black clouds and lots of rain. My mother had given me a huge blue tarp the other day which came in handy. I connected the tarp to our existing tent and playground. We were able to fit over 40 people beneath the tent and tarp together. Luckily the sky started to clear and blue sky’s appeared by the 11 a.m. start time. We rented a blow up bouncy castle so between that and the playground the kids had an absolute blast. My cousin Beth from South Carolina that I haven’t seen in many many years came to the party with my other cousin Sharon from Seattle. My dear friend Jennifer Rogers and her husband Peter were in town and also attended. We had a ton of kids from the neighbourhood as well as Sammy’s school here. Our neighbours on 2 sides and their kids also came. Charlotte, Tamara and Benjamin also came and it was great to be with them all together. We missed Charlotte’s birthday because they were sick at that time so we got an extra cake and we all sang Charlotte happy birthday as well. Shira made all of us sing happy birthday to her and Charlotte 4 times. Finally I had to get our care worker to sing happy birthday to Shira. Sammy and Maxine missed the cake etc. because Sammy tore the nail off of his toe next to his little toe and I thought he should go to the hospital. It turns out they waited there for hours for nothing. They X-rayed the toe and it wasn’t broken, put some saline and polysporen on it, dressed the wound and sent him home!! It was beautiful day and Shira had a really great time. She is still saying, “I had a great time daddy, I had a great time.” She is a munchkin and it was so great to be hanging out with a group of people celebrating Shira’s life together. It turned out to be a dream day with way too much action, hot sun, good food, great company and lots of fun and before we knew it the day was over but it was over after an hour for Maxine, Sammy and our cousin Meghan who spent the day at the beautiful emergency facilities at VGH. It was a great day and celebration but one day did not seem like enough to celebrate a year in Shira’s life. I think we’ll return to celebrating Shira’s birthday every month like we used to!! Happy Birthday Shira “Sweet Pea, Little Miss Boops” We love you.

Mommy, Daddy, and Sammy.

Tuesday, June 16, 2009

Spinal Muscular Atrophy Shira Fisher Turns 4

We are deeply moved and proud to announce that today is Shira’s 4th birthday! The last 4 years have been years that we would never wish upon anyone yet we are thankful, grateful and feel truly blessed by our daughter Shira. Shira is beautiful, happy, and smart but more than that Shira is a human being like all of us reading this not just a sick kid.

The biggest worry most parents celebrating their 4 year olds birthday is the stress of who to invite, how large it should be and should we have goody bags. With us each year a birthday comes along and we don’t know if it’s the last; we celebrate but we always wonder if this is the last. We try not to think these thoughts but we are surrounded by statistics, mortality rates, and watching friends loose their children to this horrible disease.

Laughter, joy, love, adventure and frustrations make up Shira’s day like anyone else. We sit here in bewilderment, awe, and unconditional love for one another. Most days we don’t see Shira’s disability. Shira’s soul and personality shine brighter than the harsh reality of Spinal Muscular Atrophy and its mortality rates.

There is much heartbreak in raising a child or caring for a person with Life Threatening Illness. Boundaries and walls are everywhere as you make your way through each day. I have never met so many people, great people as those caring for children or adults with disabilities. These caregivers meet these boundaries and walls with the clenched fist of advocacy time and time again. Life! I really never understood what a life was until we were told Shira has Spinal Muscular Atrophy Type 1, a terminal genetic disorder and that she was very weak and probably wouldn’t live to be 1.

Our story is like many stories about doctors misdiagnosing Shira saying there was nothing wrong with her, then being given no choices of care or therapies which may prolong Shira’s life or at least insure she experienced the highest quality of life, being told “There was nothing we could do so just take her home and love her until she dies.” It was a total, full blown out and out brawl of wills to get the doctors here on track to do what we wanted for Shira. Finally the doctors relinquished and got on board to help us deliver the NIV Protocol of Dr. Bach of The University of Medicine and Dentistry of New Jersey. These therapies would not cure Shira but they would help to prevent an untimely death!

We have met a lot of amazing, caring, compassionate people along the way. Our sister in law Abbey had found out about Dr. Bach in New Jersey and we felt we had to go see him. Maxine called Alaska air and while talking to the ticket agent she mentioned we had to go to NJ as our daughter was very sick. The ticket agent asked if our daughter had SMA Type 1 and this was before we had the official diagnosis back. Well we were taken aback that he would just blurt out the disease our daughter has. It turns out we were speaking to Mr. Mortenson the grandfather of a child living in Denmark! Mr. Mortenson connected his son and us and it was from this man I learned about what we were dealing with and the severity of the illness and the timely manner in which we needed to get Shira on ventilation and a g-tube before she got ill.

Our fight began at this point. I was scared to death because no doctors were listening and no one wanted to pursue the course of treatment we found out about. Maxine being the brave one in the family did not listen to the naysayers and promptly called the media. While we fought with the medical system to deliver the treatment and care we had researched Lora Stants who had lost 2 children to SMA and started SmaSupport Inc. sent us all the NIV equipment right to our door. Angela Trick a mother who had lost her son to SMA about six months earlier than Shira’s diagnosis sent us her son Jacob’s Cough Assist Machine. The doctors here were still not convinced to use this equipment as they were caught up in medical hubris. After being in the hospital for well over 30 days I took the machine in, plugged it in, watched the video on its use and started practicing on myself. It was at this point the doctors jumped in, decided to understand the machine and how it is used and we proceeded to use it on Shira. Shira’s lungs started to heal quicker and coupled with non invasive ventilation she was healing fast. All the way along it has been a comedy of errors, lack of information, and terrible relationships with the medical profession. Everything starts as no and you have to advocate (fight) hard to get what you need for your child. I have never been involved with so many educated people giving advice on a subject they no very little about. How can people advise you on daily care when they have never cared for a child with this type of disability? It happens all the time and unfortunately the children then die untimely deaths.

Doctor Bach is my hero and I bow to him for standing up against the emdeity of a medical systems conventional wisdom on the subject of Neuromuscular Diseases and their treatment and care of them. I have learned that as much as there is science involved in medicine there is also a lot of personal feeling which go into diagnosis, prognosis as well as modes of treatment and care and these can be skewed by everything from: sickness, mental illness, addiction, relationship problems, discrimination and on and on just like the regular population.

I have had people to tell me to stop complaining because here we are now and Shira is 4. The reality is we see the same terrible advice and medical treatments being given to patients today as we did for us and to families before us. Advocacy never stops and we will never stop advocating for Shira or anyone else that needs help! We were told not to go on chat groups because the parents on them were obsessed with their children’s care! Huh! We were told not to have false hope! Hope is never false!!! We have been told that we chose to care for such a child and we got what we asked for!

The list goes on and on and it never surprises us as to what we are told as to the reasons this happened to Shira or to people’s reactions to Shira. There have been angels come to us from where we least expected and angels disappear from us from where we least expected.

We want to thank everyone who has supported us while we go about our daily life keeping Sammy’s life as regular as possible and Shira happy. Without our family and friends emotional support, our friends on Sma Support Inc. chat group support, Dr. Bach, Dr. Schroth, Dr. Swoboda, Dr. Beck, Dr. Barclay, our OT Susan Gmitrosky and PT Joan Glover, Andrea Hofmeyer, Cheryl Dawson, Jane Henderson, Marie and Kenny, Bubby Ruth and Bubby Harriet, Amy and Rafi Gelbart, Chai Lifeline, SmaSupport Inc. and Laura Stants, Help Fill A Dream, President’s Choice Children’s Charity, Vancouver Foundation, Muscular Dystrophy Association of Canada, Shira’s life would be very different. But mostly thanks has to go to Maxine Shira’s mom who makes every day possible for me to care for Shira while making sure Sammy is leading a healthy inclusive life and is not neglected in any way. It really does take a village to raise a child!!!

Happy birthday Shira “Little Miss Boops, Sweet Pea” we love you and are proud of you. You have shown us how precious life is and how to live it with dignity!

Love Mom, Dad and Sammy

Thursday, June 11, 2009

Shira's 4th Birthday Party

Shira Is Turning 4 and You are invited to Shira's Party Sunday, June 21 Time 11-2PM Where: Our back yard 4478 Majestic Dr Victoria, B.C. RSVP Maxine 250-686-7582 Children must be accompanied by an adult!!! Please do not come if you are sick which includes, runny nose, cough etc. If you have been sick you must be symptom free for 24 hours before coming over

Monday, June 8, 2009

Charlotte and Shira On Mt. Doug




I think this photo just says it all!

Tuesday, June 2, 2009

Weight, Height, Growth-Spinal Muscular Atrophy

Almost everything to do with the care of an SMA Type 1 child is up for debate. Except for the Conventional wisdom of Tracheostomy all other modes of therapy are often looked down upon by physicians and other medical professionals. Can you imagine doing double blind studies on terminally ill children allowing some to just die while giving life saving treatments to others. I have observed many children now while caring for my daughter Shira who has SMA Type 1. My greatest frustration is parent's not receiving a list of choices for therapies that would insure their child does not die an untimely death. It's true that a course of action can be strictly palliative and I support parents that want to go that way if they have been exposed to all the modes of therapies available for our children before making their choice. This is a long discussion so I will get to the point I would like to make today. Diet! Yes diet is another mode of therapy for SMA Children that is a heated topic and of great debate. I am tired of doctors telling me that the AA diet or Amino Acid diet is unproven and might be dangerous. I have watched more children suffer from other diets than from this diet. The other diets also available for our children are also unproven in the SMA world and are also just as anecdotal in effectiveness as the Amino Acid Diet. So, if you are butting heads with your nutritionist and doctor over the AA diet just ask them for Clinical or Empirical information Expressly Written that proves that the diet they would like to see your child on has been studied on SMA patients. I can tell you right now no diets have been studied on an SMA Population!

Also, one of the measures doctors and nutritionists use is the traditional BMI or Body Mass Index to chart SMA childrens development. Unless nutritionists and doctors adjust for SMA patients low musculature etc. the outcome will show the SMA patient to not be thriving which just isn't the case. I have recently found an Index that might be more inline and accepted to use for the SMA population than the BMI and that is the Kennedy Krieger Institutes Growth References for Children with Quadriplegic Cerebral Palsy. Growth Charts

If you need more information to back up what you are talking about with your Doctor, Nutritionist and other medical professionals regarding the AA diet you can also go to Shira's web site at Shira's Web Site

Wednesday, May 27, 2009

Serendipity? Coincidence? Fate?

Yesterday was another really good day for Shira and I. Poor Sammy is starting to feel a little left out so I’m hoping we can move upstairs today or tomorrow. Our close friends from Israel are in town now and I’m really looking forward to spending some quality time with them. Yesterday was a lot of fun. Shira and I decided to go to the Victoria Art Gallery. Shira had more fun playing with some business cards while we walked around the gallery than actually viewing the art ……lol but I thought I would give the gallery a try. Again we are travelling on bipap, laying on her side using the EZon vest. After the gallery we drove down to my mother’s house and hung out there for a couple of hours as she didn’t have any guests and therefore we wouldn’t be exposed to any illness. We went for a walk down to Victoria’s inner harbour to feed more seals. A strange thing happened while down at the harbour. My mother had just given Shira a little stuffed Panda Bear but while on the docks in the harbour I dropped the bear. A First Nations ran up to us to bring the bear back which we hadn’t noticed was gone. This is getting weird all these First Nations People and Bear energy coming into are lives again!!! I’m not a superstitious person but is this more than consequence? We ate dinner on the docks (Halibut Burger Mmm), walked back to my mother’s and headed home once again on bipap. When we arrived home Sammy was so happy to see us. It has been 31/2 years since I have left the house on my own with Shira so unless I had someone go with me to suction Shira or drive so I could Suction Shira we would stay close to home. Sammy never experienced Dad and Shira leaving for the whole day before. I put Shira on bipap for at least 1-2 hours a day to recharge and not get overly tired but yesterday we played it by ear and I just kept an eye on her in case she needed a break but she was fine with 2 short bipap breaks while we drove from point A to B then B to C. All in all another fantastic day mixed with a mystical experience! And let’s not forget feeding the Seals which is always too much fun!!!

Monday, May 25, 2009

Strength, Courage and The Bear




When you care for children with SMA you have as much routine in your day as a soldier does in the military. Today we went awol from our routine a little with Shira sleeping in an extra hour so we missed our morning Chest Physio session. As soon as Shira was ready I asked her if she wanted to go downtown and have another adventure and her answer was a loud Ahhh Ha! We have now mastered the art of travelling alone with Shira placed on her side in her EZon Vest while on bipap. I advise anyone travelling alone with their SMA child to travel this way as it helps prevent desat situations as well as managing secretions. We arrived downtown parked unloaded etc. which is a chore in itself when you are alone. Amy my hat goes off to you for the years you spent caring for Lily on your own and thank you for teaching me so many valuable skills!!!! Shira loves to walk through stores especially the stores playing funky loud music. It took Shira and I about an hour to walk a mile because we stopped at every street musician so Shira could sing with them. Yes you heard me. Shira has a microphone and speaker so people can hear her speak because her voice is so low in volume. Now Shira is heard very well and she can also hear herself better. Shira has an excellent ear and can match pitch very well with most melodies. So the street musicians got a kick out of Shira humming along with them. I would put a couple of quarters in Shira’s hand and wheel her over to their guitar case and hang her hand over it and she would work very hard to drop the quarters into the case. We worked our way through downtown to the waterfront where there are more street musicians and lots of artists of all kinds. At the end of the row of artists is an embankment where all the First Nations people sit making arts and crafts. Shira loves to with everyone. She is so cute. She loves to say, “Hello, nice to meet you!” It just makes people melt. We walked the line of all the First Nations Artists and one of them a big burly man with hands the size of warn baseball gloves looks deeply at Shira and says, “take the small bear drum there I want her to have it.” Then he says to her, “You need strength and courage little one. The bear will bring you strength and courage.” And he says to me, “She will play the drum for both of you, you need strength and courage too.” Man it brought me to tears. I shook the mans hand and we walked on. As the Oglala Sioux would say charging into battle to count coup, Hoka Hay! My heart was soaring. This man connected deeply with Shira, he could see, no words needed to be spoken between us for understanding. After our spiritual encounter Shira and I headed off towards my mother’s house. On the way we stopped and played with the huge draft horses that pull carriages full of tourists. We only stayed long enough at my mother’s to say hello and take a bag of carrots from her to feed the horses on the way back to our car. While feeding the horses the owner came up to me and basically mistook Shira for Charlotte Hodgson who lives in that area and is often feeding the same horse with her mom Tamara. SMA children have many of the same physical traits and Shira is often mistaken for Charlotte when we are in their neck of the woods. After feeding the horses our bag of carrots and sharing our carrots with another little girl that was there so she could also feed the horse Shira and I headed back to the car. So now not only did we miss our physio session in the morning but we were way past Shira’s respirator break, bad dad!! We got back to the car and I put Shira on bipap and she relaxed and breathed easy all the way home. When we got home and moved all the gear inside I placed Shira back on bipap, I drank a gallon of water and looked in the mirror only to notice that I had a sunburned face that started half way down my forehead because I was wearing a hat. Another adventurous day with Shira!!

Saturday, May 23, 2009

Traveling Solo With Spinal Muscular Atrophy Type 1


The last few weeks have been tough. Sammy was endlessly sick the last part of the winter and now Maxine is very sick. Maxine went in to have swabs and tests done so we will hear on Monday if she has anything nasty. Today was a reprieve for Shira and I that have lived in our basement way too long this winter. A Channel news that helped us in the beginning by putting pressure on the Health Minister and Doctors here called us to come down and speak at a rally. The rally was for the television that was trying to make a point as to how important the news was beyond entertainment. Canadian television companies are not doing well these days because of the slow down in the economy and they are fighting with the cable service providers that charge them a fortune to carry their signal. Long story short Maxine and Sammy did not come with us because they are sick. So Shira and I went for our first solo car ride. We followed Lily Barnett’s car travel protocol by laying Shira on her side and traveling while on bipap. Usually I only travel with another person so that Shira can be suctioned but this time we had to go solo. Everything worked out without a hitch and all the way there and back Shira kept saying, “I’m having fun daddy!” “I’m ok daddy!” She was so funny! When we got to the event I was surprised to see the street blocked off, a jazz band playing, food, mascots etc. The journalist that has helped us out many times greeted us as well as the anchor. I thought I was just going to be interviewed and it would be on the air but it turned out that I was to speak in front of 250 people. Shira was great and had a lot of patience while I spoke. When I was done Shira just wanted to watch the band play. After about an hour Shira said, “Daddy walk around.” So we left the event and walked around downtown. We went to the Gap where Shira picked out an outfit (Gap Girl athletic lime green jacket and pink pants) and then we walked around downtown. We stopped to listen to a guy playing guitar on the street and Shira sang along with him using her microphone and speaker. After about an hour of walking around and talking to people Shira and I headed back home. The ride was un eventful and fun all the way home. When we got home Shira rested for about 2 hours on bipap and then we headed out to watch baseball until 9 at night. Sammy came with us which is not usual as he hates to walk but he did tonight. Of course when we got to the game Sammy just wanted to leave and he hounded me the entire time for pop which I wouldn’t buy for him. On the way home Sammy wanted me to carry him on my shoulders of which I refused so he started telling me he was going to have a heart attack he was so tired. I didn’t give in and carry him this time and we had a race for part of the way back, stopped at a park to play for a and chatted up a storm. 6 year olds are hilarious. We talked about a wide range of subjects from brain damage, how clouds are made, why people of color aren’t as famous as white people (then he remembered about Barack Obama), who the most famous person in the world was, why the giant boulder he climbed on was hot, why the two men that walked by us were different shades of brown, why we can’t take flowers out of peoples yards and on and on and on. Now Shira is on bipap and tucked away in bed and I’m writing this. It was a good day!!

Saturday, May 16, 2009

It's Never Too Late

I'd be lying if I didn't say that things have been tough for me hearing about all these children and people dying from SMA. Some parents and children I have met only briefly through email and telephone conversations some more intimately through video conferencing. It's hard to experience the pain of children dying over and over again, trying to understand the suffering of parents, syblings and close friends. There are so many things I don't like anymore that once I enjoyed like war movies, violent action movies and other art forms that push the buttons of conventionality. I'm always on edge, on high alert for Shira and every time I hear of another child sick, even regular kids something inside me makes my sences more heightened. When I see a parent scold a child outlandishly, spank a child, smoke in the car, or parents not closely watching their kids as they play in the park I feel fear for those children. I never felt this way before, not even when Sammy was born. Sure, I wore my heart on my sleeve a little more when Sammy was born but I came from that school of "Let the boy go he'll learn." or " what doesn't kill you will make you stronger mentality." I just finished watching The Curious Case Of Benjamin Button while Shira lays in her bed on bipap not feeling 100%. The movie is a must see and I won't watch and tell other than to say, watch it. Here is an excerpt from the movie that I liked about facing life:

Excerpt from The Curious Case Of Benjamin Button



“For what it’s worth it’s never too late to be what you want to be. There’s no time limit, start whenever you want. You can change or stay the same, there’s no rules to this thing. We can make the best or the worst of it. I hope you make the best of it. I hope you see things that startle you, feel things you never felt before. I hope you meet people with a different point of view. I hope you live a life you are proud of. If you find that your not, I hope you have the strength to start all over again.” – Benjamin to his daughter.


I can honestly say that I have never been so proud of myself as I am now for the way Maxine, Sammy and I care and deal with and for Shira and each other and how proud I am to know so many people that put so much energy, love, compassion and care into their children or friends children like the people on smasupport. There is a real energy on smasupport chat that keeps so many families going inspiring them to deliver intensive multidisciplinary care to their kids or others day after day after day. Here's a big pat on all of our own backs or as many of you put it, "Hugs!" Brad