January 23, 2010

THE GWENDOLYN STRONG FOUNDATION CAME IN 6TH PLACE AND WON $100,000 THANK YOU TO ALL THOSE THAT VOTED.  THIS IS A LARGE AMOUNT OF MONEY THAT WILL GO TO RAISING AWARENESS AND RESEARCH INTO FINDING A CURE FOR SMA. ~ BRAD FISHER

"Never doubt that a small group of thoughtful, committed citizens can
change the world. Indeed, it's the only thing that has." -- Margaret
Mead

We did it! We really, truly did! Together, we accomplished the
monumental. Together, we raised a TON of awareness of SMA. Together,
we are having a material impact on curing it. Together, we are
changing this cruel disease -- FOREVER! Out of more than 500,000
charities, the Gwendolyn Strong Foundation, striving to END SMA,
received nearly 52,000 votes in 8 days and placed 6th -- sixth place!
For that honor, we'll receive a $100,000 grant from Chase which will
be used to accelerate awareness and research toward a cure.

Never before have we been part of something like this -- a true
grassroots movement. Something so much bigger than ourselves. Baring
witness to a change occurring -- a shift in what has been before. We
are humbled, moved, and motivated by the extraordinary that has
happened this week.

We are so proud of the amazing SMA community. The families who
virtually stopped all else in their lives. The parents who ferociously
fought and bore their souls to expose the agonizing reality of this
disease. And did so with painfully beautiful poignancy.

We are humbled by the extraordinary acts of kindness, the grassroots
activism, the tireless persevering, the enormous favors called in from
those both impacted by SMA and not, but who regardless took it up as
their passionate cause -- because the health of all babies is
important to all of us.

The things we witnessed people doing, the energy and creativity behind
each effort, the pure passion to prop the Gwendolyn Strong Foundation
and SMA on our collective shoulders and compete against these much
larger organizations to remain on the leaderboard -- person by person,
family by family, company by company, organization by organization,
ask by ask, email by email, tweet by tweet, vote by vote. Each of us
refused to relent. And we know we are only aware of a fraction of what
occurred in this movement. Take a look at this incredible list (click
here - http://bit.ly/7jioKN) of celebrities, athletes, musicians,
organizations, publications, blogs, etc. that threw their support
behind our cause. Humbling. Simply humbling.

The Gwendolyn Strong Foundation doesn't have a fancy national
headquarters or hundreds of chapters or a big marketing budget or a
team of employees. No, we're just two parents in a house in Santa
Barbara, California with two MacBook laptops caring for our terminally
ill two-year-old daughter and fighting any way we can to save her
life. But, in this Chase campaign the Gwendolyn Strong Foundation was
much, much more than the three of us. It was also two parents in a
house in New York. And three people in a house in Spain. And three
people in a house in Ohio. And 25 people at a company in Mississippi.
And one family in a house in Australia. And one person in a house in
Texas. And five people in a house in Arizona. And two people in a
house in the England. The list goes on and on. And together --
collectively -- UNITED -- relentlessly -- all of our amazing
individual efforts and our enormous unwavering passion amassed into
this wonderful grassroots effort.

We should all be so proud of ourselves. We have done something that
has never been done before. We always knew this Chase Community Giving
campaign was an incredible opportunity for SMA, but it has become so
much more than we could have ever imagined. We are so very honored to
have fought for this with you. Together, we have helped change the
future of this cruel disease.

~Bill Strong (Father to Gwendolyn Strong, SMA Type 1)

 

January 9, 2010

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." 

December 29, 2009

Swing-Enabling System

http://www.canassist.ca/swing

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.

December 22, 2009

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!" 

November 24, 2009

 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!

November 18, 2009

"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."

November 16, 2009

CLICK ON ME TO WATCH 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.

August 17, 2009

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. 

July 20, 2009 

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.

June 16, 2009

 Shira's Birthday Video click here!

Shira's 4th Birthday is Today!!! 

We are deeply moved and proud to announce that today is Shira's 4^th 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

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.

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!!!  

May 24, 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!! 

May 23, 2009

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!!  May 16, 2009

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

May 07, 2009

Lately i've been thinking a lot about what it means to be a hero.

http://www.wikipedia.com/  Definition: hero (male) and heroine (female) came to refer to characters (fictional or historical) that, in the face of danger and adversity or from a position of weakness, display courage and the will for self sacrifice - that is, heroism - for some greater good, originally of martial courage or excellence but extended to more general moral excellence.

People have told me that my wife and I are heroes for the way we take care of disabled daughter Shira and our regular son Sammy.  I don't feel like a hero I just feel like a father that doesn't want to loose his child to a horrible terminal disease.  Some people believe a hero is someone that has overcome great odds and persevered against great odds.  Does this mean the people that survived the Titanic are heroes while those that died are not?  Are the survivors of the Holocaust heroes while those that died at the hands of Nazi Germany not heroes?  Not long ago I watched a show about American War Heroes.  The subject of the show was to figure out what separated these heroes from the regular population of people.  None of the heroes interviewed felt like heroes and none of them could explain why they put themselves in mortal danger sacrificing themselves for the good of others.  A wave of selflessness took these heroes over making them act putting their comrades lives ahead of their own.  

Since our daughter's diagnosis (with Spinal Muscular Atrophy Type 1) I have met hundreds of families that "go beyond the call of duty" to care for their children.  Is there a limit as to how much effort, time, money etc. they should put into their children?  Is there a limit as to how far one should go to insure the safety of another human being?  The great child advocate June Collwood said,  "If you see an injustice being committed, you aren't an observer, you are a participant."  Are the men and woman that save people during times of genocide like the holocaust in the second world war, Ruwanda, Serbia Croatia War, or the current African conflicts heroes?  Shouldn't saving people from harm be the norm not the exception?

A few years ago when a bridge collapsed in Minneapolis we saw acts of heroism by passersby saving people trapped underwater in cars, on the bridge, near the bridge etc.  I started to wonder if these heroes were also heroes in their daily lives or were their actions to act and climb down a collapsed unstable bridge just a primal reaction of the moment?

It's my opinion that there are different levels of acting in heroic ways and that heroism is in fact subjective.  Those that act heroically only to gain fame or monetary reward is the lowest level of heroism; their actions are still heroic but the actions are offset by their own personal needs. 

 For me the true heroes are: the woman living down the street that has cared for her disabled daughter for 46 years, the parents who care for children with life threatening illness at home and spend all their time insuring their regular children live full lives, or as Christopher Reeves put it, ""When the first Superman movie came out, I gave dozens of interviews to promote it. The most frequently asked question was: "What is a hero?" I remember how easily I'd talk about it, the glib response I repeated so many times. My answer was that a hero is someone who commits a courageous action without considering the consequences. A soldier who crawls out of a foxhole to drag an injured buddy back to safety, the prisoners of war who never stop trying to escape even though they know they may be executed if they're caught. And I also meant individuals who are slightly larger than life: Houdini and Lindbergh of course, John Wayne and JFK, and even sports figures who have taken on mythical proportions, such as Babe Ruth or Joe DiMaggio. Now my definition is completely different. I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. The fifteen-year-old boy down the hall at Kessler who had lannded on his head while wrestling with his brother, leaving him paralyzed and barely able to swallow or speak. Travis Roy, paralyzed in the first eleven seconds of a hockey game in his freshman year at college. Henry Steifel, paralyzed from the chest down in a car accident at seventeen, completing his education and working on wall street at age thirty two, but having missed so much of what life has to offer. These are real heroes, and so are the families and friends who have stood by them." 

For me heroes are: those that have a choice to act or not act selflessly and choose to act in such a way as to give of  themselves to a greater good other than themselves, and those that over come great personal obstacles becoming examples to others.   A greater good can be something as small as giving up a vacation so that your kids can go to camp or crossing the street just to help someone needing help . 

Two weeks ago Help Fill A Dream was at our home erecting a playground in our back yard that was donated to our daughter so that she could play with other children and her brother.  The men that showed up on their own time, on a Saturday to spend 7 hours working just so our daughter, whom they had never met, could have more happiness in her life.  These men are  HEROES!!  

Everyone really does have the potential and capacity to be a hero because heroism is not measured by the type of action but by acting solely for the better good of someone else beyond ones self!

The other day I ran across a quote by Ghandi that really described how each of us could live a selfless heroic life. 

"I will give you a talisman. Whenever you are in doubt, or when the self becomes too much with you, apply the following test. Recall the face of the poorest and the weakest man [woman] whom you may have seen, and ask yourself, if the step you contemplate is going to be of any use to him [her]. Will he [she] gain anything by it? Will it restore him [her] to a control over his [her] own life and destiny? In other words, will it lead to swaraj [freedom] for the hungry and spiritually starving millions?
Then you will find your doubts and your self melt away." - Ghandi

Every day I meet more and more people and get to hear their stories of heroism.  Their stories inspire me to "Let my self melt away" by reaching out to other's in need.  It is my hope that this little article is not taken as holier than thou but as siren call stirring the hero potential within all of us! - Brad Fisher

February 08, 2009

 Illness has once again taken over our household. Maxine and Sammy are both sick so Shira and I have moved downstairs and quarantined ourselves off. I have started taking Sammy swimming again every thursday after not doing anything with him for about a year. I have been so focused on Shira but I have to put some time into Sam.

The meeting with Help Fill A Dream went well the other day and they have ordered the play ground for Sammy and Shira. I asked for a play ground for both of them rather than a trip to Disney Land because Shira can not get insurance which would cover her pre existing condition of Spinal Muscular Atrophy. Yes we could get travel insurance for her which would cover other injuries etc. but if it is related to her existing illness it would not be covered. So what do people do that travel to the States to go to Disney Land with sick kids? They go with no insurance!!! They might think they have insurance but there existing illness will not be covered. We should have the play ground built in the back yard the first 2 weeks of March. Sammy and Shira are in the dark about this so please keep it secret until it happens as Help Fill A Dream put on a special event for the kids.

Shira loves to swing and the swing that will come with the play ground is called a Jennyswing. I am also going to build a platform swing in our home for Shira. Kids that can't move love to swing as it gives them the feeling of motion. The motion also helps develop their vestibular inner ear. The platform will be hung from the ceiling and will be large enough to hold her and a dvd player so she can swing and watch movies.

The last few days my upper right back near my shoulder blade has been hurting me in a relentless way. I have never had back problems but my lack of exercise and weight gain i'm sure are the culprit so I have to ramp up my exercise regime and loose some weight.

I hate being seperated from Sammy and Maxine but it is the only way to insure Shira stays healthy. The weather has been pretty mild and we have been getting out but not enough. Tomorrow we will walk up the mountain.

I just watched this amazing program about a man who lived in pristine wilderness in Alaska for 30 years. It's amazing check it out http://www.dickproenneke.com/
Sometimes homesteading sounds like a great idea! I'd like to take the whole family and get the hell out of here but that's just my fight or flight reaction to the insanity of living with a life threatening illness.

Spring is on the way so I have to fix our garden and plant it in March this year unlike the last 6 years where I planted too late. This will be our banner year for our garden and we can juice our home grown vegies for Shira's food.

Prayers to all the families out there with sick kids!!!

January 21, 2009

"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 to 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!

January 14, 2009

Thank you for the well wishes everyone. Life is crazy with SMA. We spent our Anniversary in 2 separate parts of our house. I was in the basement with Shira and Maxine was upstairs with Sammy who has a cold. We move downstairs to our basement the minute anyone starts showing signs of being ill in our house to try and keep Shira healthy. Sammy is feeling a lot better but he has one of those coughs that you get when your cold is breaking up so we didn't want to expose Shira to that. Maxine made a beautiful meal and we had some wine with dinner. I ate downstairs and Maxine ate upstairs. It seems crazy but Maxine and I are so on the same page with Shira's care and what we have to do to keep her healthy that we just do it and it just seems to make us stronger and closer. Since Shira's birth life seems to have really picked up speed. Our focus on Shira's care is so intense that life is just whizzing by faster than ever. Don't get me wrong as we have a lot of joy with Shira. The other day Shira and I went for a 2 hour walk in the pouring rain and yesterday Maxine and I went for an Anniversary walk with Shira. While its quite traditional for many of us to go out and celebrate our Anniversaries Maxine and I have been home the last 4 years on our anniversary sharing it with our children. Sammy was so excited to have a "small family party" as he put it. I don't remember any of my parents anniversaries because they were always seperated then divorced when I was so young. I can't imagine how Sammy is being influenced by constantly having both parents here for him and him being able to celebrate in our Anniversary and all the other events together. It's amazing how the worst case scenario (your child having a life threatening illness) also has such a positive aspect; the ability to draw the family closer together. We are thankful for what we have, the celebrations we get to share as a family and each day we get to spend together! Thank you for all the well wishes and out pouring of love and kind words.

December 31, 2008

Shira Update

Well we have been back from the hospital since the 24^th of December.  When Shira was sick she was on bipap for about 17 days straight which means she became dependent or biapap dependent.  Bipap is bi level positive airway pressure and is the type of respirator she uses.  This type of ventilation is considered non invasive vs. tracheostomy which is considered invasive because it takes a surgical procedure to introduce the system to the body.  Anyways, we left the hospital while Shira still had a little adolectasis in her left lung but she was well enough at that point to be managed at home.  Because we have a battery back up system and true sign wave inverter we were able to transport Shira back home while on her respirator.  We took an ambulance from the hospital because it is so much easier to load her onto a gurney with all of her equipment, slide her into the ambulance and have the extra 2 sets of hands to bring her into the house.  Once home the recovery really started.  It was so great to get out of the toxic hospital air and lighting.  Our first days at home were spent getting Shira slowly off of bipap and getting her food back up to speed.  Shira is fed through a tube in her stomach and has been fed this way since 6 mos. Of age.  Shira is now on her regular feeding schedule and volume as well as spending about 6 hours a day off of bipap.  Yesterday was our first walk in 22 days which is way too long to be indoors although I remember being inside for more than 3 mos. At a time when Shira was first diagnosed.  Shira is a little weaker than before going into the hospital but it is my hope that she will gain back her strength.  We have been spending our days playing, learning, Shira is a real sponge.  You don't notice what she knows or doesn't knows because expressing herself takes a lot of effort but then you ask her a question out of the blue and she gives you the answer or sings something on her own.  She knows so much and can almost read.  If you just sound out a word she'll tell you all the letters.  Shira loves to finger paint and do all sorts of art work.  I am going to build a new repair shop in my basement for repairing musical instruments and making adaptable devices for Shira so that she can do more.  We are looking forward to getting back on track with learning how to drive Shira's power chair.  Oh I forgot to mention that Help Fill A Dream approved us to build an accessible playground in our back yard with a special swing for Shira so she can play with Sam and other kids.  We are really looking forward to some better weather so that can happen.  Also, ChaiLifeline is sending Maxine and Sammy to Disney World in Florida in January on their way to visit Bubbe Ruth in Hollywood Florida.  Maxine has a cousin with a little girl slightly older than Sammy that lives near Disney Land so they will get a chance to visit with them.  Shira and I are going to start to run again and we'll see how it goes.  I have some foot problems these days due to many years of sports and I'm about 30 lbs over weight so hopefully some weight loss will take care of the foot problems.  Shira and I want to try and run at least the half marathon next October again and beat our time of 2:22 but we will train for a full marathon in the hopes of doing that as a fundraiser.  I have to thank everyone again for the love and support so many of you gave us while in the hospital.  These life and death situations with our kids are gut wrenching and take an enormous amount of energy and concentration to get through.  The love, prayers and contact make it a lot more easy to make it through the critical moments.  Maxine, Sammy, Shira and I wish all of you a Happy, Healthy, Successful 2009!!!!!! 

December 25, 2008

Merry Christmas, Happy Chanukah and Happy Holidays to everyone!!  We are so happy to be home as a family!  I feel like its a Chanukah Miracle that we have been spared more time together.  Though I haven't seen any kids pass away from RSV since joining chat all those that have been through it know that without life saving treatments are kids can easily die!  There were a lot of tense moments during this illness but I feel we were better prepared than the first time.  The first time Shira contracted RSV we did not have any of the NIV equipment and the medical establishment was against us using any of the equipment.  This time, with everything in place I believe Shira was able to manage the illness better.  I always seem to learn something new when I go into the hospital with Shira.  Some of you might already do what I have learned and some of you might think its obvious to do what I have just learned.  While in the PICU this time I learned that Tamara Hodgson was  doing CPT on Charlotte while on bipap.  In the past and in our past visits the PICU team always took Shira off of bipap for CPT and neb treatments.  When they told me about what Tamara does I that that's a great idea and it was.  Shira had no extreme Bradichardias while doing CPT after we decided to do them while she was on bipap.  I also had the PICU nurses bag in Shira's nebs with oxygen and we ran inline oxygen in with the cough assist during treatments.  Shira did have a lot of extreme Bradichardia's but we were able to lower the amount of them by doing as much as we could with  Shira being ventilated and running in O2 wherever possible.  I have never liked using Sims or yonkers etc. on Shira but there was a NICU nurse that brought in some NICU equipment.  The NICU equipment is much softer and gentler on the patient and I loved the NICU Bebeonkers Caalog #16-2 and have ordered some from http://www.small-beginnings.com/  The worst part of this hospitalization besides Shira suffering and coming close to being intubated was the fact should Shira be intubated they were going to med vac us to another city because there are not enough nurses where we live to care for more than 2 intubated patients at a time.  This terrified me!  I am starting my letter writing campaign and going to straighten this out.  After watching so many children get intubated and extubated I was prepared for Shira to be intubated should need be but I was not prepared to be separated from my family.  This hospitalization was for 12 days instead of the 42 days the first time Shira had RSV.  I know the shorter hospitalization was due to Dr. Bach's methodology and I am even more of a believer today in his methods than yesterday!  The NIV works so well for our kids!  Keep up the good fight everyone and have a great time with your kids and families this holiday season!  I can't thank all of you enough for the support and knowledge that has helped us keep our Sweet Pea, Little Miss Boops alive and happy all these years.  With love, deep gratitude, thanks and all good things.  Brad 

December 09, 2008

We regret to inform everyone of the passing of Dr. Abe Chames. Dr. Chames sent us an oxymeter (so we could monitor Shira's Oxygen levels and keep track of her heart rate) when Shira was first diagnosed out of the kindness of his own heart. Dr. Chames touched our lives profoundly and was a man of deep integrity. Dr. Chames told me that he did not understand how to treat SMA but that he would help our family any way he could. Most doctors have many opinions and most of them incorrect when it comes to the treatment and care of Spinal Muscular Atrophy. We are deeply sorry to loose such a strong supporter of our family and what we are doing to deliver Shira a high quality of life. We send our deepest and most sincere condolences to Dr. Chames's family! You will be missed.

Breath in.

Breath out.

When avoiding the sick takes the place of reaching out

Breath in.

Breath out.

When indifference takes the place of compassion

Breath in.

Breath out.

When fear takes the place of love

Breath in.

Breath out.

When dogma takes the place of the devine

Breath in.

Breath out.

When war takes the place of peace

Breath in.

Breath out.

When revenge takes the place of action

Breath in.

Breath out.

When a child is shunned takes the place of inclusion

Breath in.

Breath out.

Breath in.

Breath out.

Breath in suffering.

Breath out compassion.

By Brad Fisher

September 05, 2008

September 03, 2008

Boy does time fly!! Sammy started grade one this week. We are so proud of Sammy. Sammy spent all summer in different camps and really enjoyed himself. Sammy is a little man these days. He keeps himself busy doing a lot of dress-up, performing his own shows for us and Shira and playing with kids in the neighborhood. He is so good with Shira it just breaks your heart to watch how gentle and loving he is with her. Sam understands Shira so well they are really best of friends. Shira lights up when Sam dots on her. So, here are a couple of photos from this week. Our help situation is really bad at the moment but we refuse to settle for anything less than a dedicated person that really wants to do this kind of work and isn't settling.

August 24, 2008

Dealing with the public and living with SMA is enough to make you loose your mind. We had another person quit working us recently to take on another job that would be better for her career. I don't have problems with people wanting to follow their dreams but I do get upset when they are dishonest and only use us. One of the questions we ask potential employees is, have you applied for any other positions? and if you have and you are hired for that position would you accept it over our position? We have had several employees leave us after answering that they have looked for other work but this is the position they want. We even go so far to inform the potential employee that this is a family you are working with and that we have a daughter with a terminal genetic disorder. We bring to their attention that we rely heavily on them to ease some of the demands for caring for a child like Shira and that this is not the place to take advantage of someone. If you want to take advantage of an employer to make money until your dream job comes along please do so at Starbucks or a company that can deal with high turn over and that is a less important job. People look you right in the eye and insure you that they are honest and that they would never do such a thing. Then, weeks later after lots of effort and training they tell you they got a call back from a job that they really wanted. We are seriously being tested here. Our level of patients for dealing with mediocrities has been taken to an extreme level.

I have to honestly say that the only people that really understand exactly what we are going through are people that are disabled, parents and caregivers of the disabled, or other people faced with or have been faced with life threatening illness. I've had a family member even tell me once after I suggested a video for them to watch on SMA that, "I'm not interested, it doesn't affect my life." I've had other's suggest that we should have no complaints as we made our own choice to care for someone this disabled when we also had the choice just to let her die. I have realized that though I live in the west, in a democratic society that there is still a mob mentality and that there is a lack of caring and positive attitude when it comes to quality of life issues and the disabled. We have people in positions of power controlling and pushing their belief systems on people that do not have the ability to affect immediate change to their direct circumstances and that they are forced to let their children or family members die based on powerful peoples opinions.

So, today people mostly suck! Again, we have found that we have experienced a great outpouring of love and support from where we least expect it and the least from where we most expect it. People often ask, "then what do you want, what do you need?

We have come to realize that when you mention support the first thing people think is, "they want money!" If you ever want to get rid of anyone really quickly out of your life just be bold and ask them to give you money, you can be assured you won't hear from them again. When I say support, what I am talking about is emotional support. Everyone gets on their computer every day and just an email or a quick phone call to let families know you are there is enough. Of course physical help can also be very helpful.

So this is a call to you. Pick up the phone or send an email to someone you know that needs it and keep on doing it. I know that from my work experience I could call 50 people in 2 hours. I did this almost every day to generate leads. Many leads became customers, many leads introduced me to customers and some leads became friends, some leads become customers and friends and remain friends. Its funny how many people can make phone calls for money but they find it extremely difficult to call people that need to be supported. One is fake, make believe, acting while giving someone support is the real you. All I can say is is that if you are not supportive to those you know it is a reflection on you. Think about it. Everyone knows someone who is old, fragile, sick, or grieving. If you are close to these people in good times but aren't there just to listen in times of bad how does that look? Those people you do that to will know you are not friends, and that in reality, you are only shallow acquaintances.

I had an epiphany the other day. There are so many problems in our medical and social systems regarding the care of the elderly and children. The problem is no one cares and no one is being supportive of these adults and children. The viscous cycle of lack of love and support is taking place under the roof of these care facilities and it is a mirror of our society as a whole. It used to be that the elderly were held in high esteem and respected as people of knowledge while the young were depicted as our nations future, but our corporate minds have been branded through extreme marketing to measure ones worth by wealth alone. Unfortunately, chivalry, gallantry, and the lessons of King Arthur and his noble knights have been lost to the status quo, conventional wisdom, logo and instant gratification by the acquisition of empty material objects.

Have a nice day :)

August 18, 2008

This story below showed up on my google alert. My heart and prayers go out to the parents. Judging by the article it sounds like another case of bad doctoring as the article does not mention the doctors giving the parents any choices i.e The NIV PRotocol of Dr. Bach, Tracheostomy etc. Most of the time kids die untimely deaths because of misinformed, conventional Dr.'s that can't get past their own egos of not knowing what to do. Unfortunately because these doctors do not have the will to just get on the computer and look at the http://www.fsma.org/ or http://www.smasupport.com/ site and look at the links page and contact doctors with lots of direct experience caring for SMA Children in the U.S. the kids die untimely deaths because the doctors are plainly "Egotistical Jackasses." I have to add that i HOPE the doctors did give this family choices but I highly doubt it.

Baby's death: parents want to advise others
17 August 2008, 13:43
Click Here
By Noelene Barbeau

A young Durban couple's new- born son died recently from spinal muscular atrophy, a motor neuron disease.

In his memory, they want to create more awareness of this disease and help fundraise for expensive equipment that many families cannot afford to buy their children.

Spinal muscular atrophy (SMA) affects the voluntary muscles used for activities such as crawling, walking, head and neck control and swallowing.

Lavon Chetty was just 56 days old when he died. His parents, Dean and Terene Chetty, of Parlock, were thrilled to welcome him into the world on June 1.

However, a week later, after a series of tests, they learnt he had SMA type zero, a new classification of the disease and apparently the worst. At present, there is no cure for SMA.

'The day we found out, we came home and started doing some research on the Internet. We had never heard of such a disease and the internet just listed three types of SMA.

'SMA zero is when a baby has the disease from birth. At first Lavon could move his fingers, hands and legs, but slowly this stopped. From the time he was born he couldn't breathe without the ventilator. He also had to have a drip and a tube placed through his nose that went to his stomach,' said the grieving dad.

'He was a very alert child. He would smile when we spoke to him and would frown or cry if something was hurting, but his eyes told you his story. We had a short time with him, but we formed a close bond. The nurses were also very fond of him. They really went the extra mile for Lavon,' said Terene.

They were regulars at the neonatal ICU ward at St Augustine's Hospital and had a team of doctors to help. Forming part of the team was Prof John Rodda, a paediatrics neurologist from Johannesburg.

He said SMA affected children across all race groups and was the most common neuromuscular disorder in children.

'Regarding testing for SMA, it won't be detected in women who are pregnant for the first time, unless there's a family history of SMA,' he said.

'Antenatal testing can be done if the couple suspect their unborn child could have SMA.

'A child's blood can also be tested if his or her parents think he or she might have it.'

Terene was not tested for SMA while she was pregnant with Lavon because neither Dean nor Terene's family had a history of SMA.

But knowing what she does now about SMA, Terene feels every pregnant woman should be tested for it at their first eight-week check-up and from there make an informed decision if SMA is detected.

The couple said they had known a few days before Lavon's death that he was going to die.

'We had to plan a funeral for him before he died. That was the hardest part,' said Dean.

The Chettys searched the internet for a local website that could help them speak to parents who had been in a similar situation.

They found the Leah Reilly Foundation and met Cara Reilly, whose daughter Leah died a year ago when she was 19 months old. Leah was diagnosed with SMA type 1.

The Reillys also found a lack of support in South Africa, which led to Reilly establishing the foundation.

Reilly said local statistics were not available and she was aware of only eight South African cases.

At a recent fundraiser, University of Witswatersrand lecturer Diane Manning said she would include SMA studies in the medical syllabus from 2009.

 and here is a poem I like:

Discovery of life


Gentlemen! Today is the first time that I realize the presence of life! Gentlemen! I beg you to leave me alone for a moment, so I can savor this formidable, spontaneous and recent life emotion, which today, for the first time, enraptures me and makes me happy to the point of tears.

My joy come from what is unexperienced of my emotion. My exultation comes from the fact that before I did not feel the presence of life. I have never felt it. If anyone says that I have felt it he is lying. He is lying and his lie hurts me to such a degree that it would make me miserable. My joy comes from my faith in this personal discovery of life, and no one can go against this faith. IF anyone would try, his tongue would fall out, his bones would fall out and he would risk picking up others, not his own, to keep himself standing before my eyes.

Never, except now, has life existed. Never, except now, have people walked by. Never, except now, have there been houses and avenues, air and horizons. If my friend Peyriet came over right now, I would tell him that I do not know him and that we must begin anew.
When, in fact, have I met my friend Peyriet? Today would be the first time we became acquainted. I would tell him to go away and come back and drop in on me, as if he did not know me, that is, for the first time.

Now I do not know anyone or anything. I notice I am in a strange country where everything acquires a Nativity relief, a light of unfading epiphany. No, sir. Do not speak to that gentleman. You do not know him and such unexpected chatter would surprise him. Do not put your foot on that tiny stone: who knows it is not a stone and you will plunge into empty space. Be cautious, for we are in a totally unknown world.
What a short time I have lived! My birth is so recent, there is no unit of measure to count my age. I have just been born! I have not even lived yet! Gentlemen: I am so tiny, the day hardly fits inside me.

Never, except now, did I hear the racket of the carts, that carry stone for a great construction on boulevard Haussmann. Never, except now, did I advance parallel to the spring, saying to it: 'If death had been something else....' Never, except now, did I see the golden light of the sun on the cupolas of Sacre-Coeur. Never, except now, did a child approach me and look at me deeply with his mouth. Never, except now, did I know a door existed, and another door and the cordial song of the distances.
Let me alone! LIfe has now struck me in all my death.

---Cesar Vallejo

August 13, 2008

This weekend Shira had a very special treat. While Sammy has had several play dates at home Shira had a special visit by 2 new friends Tete and Helena and their mother Marie. Shira had so much fun!! Because we keep Shira away from sick people, exposure to crowds in enclosed places etc. it limits the kinds of things Shira can do as well as her contact with others. But the day was special and Shira had the best time and the girls were so attentive to Shira. The girls spent alot of time playing beside Shira so Shira could watch and take part in everything they were doing. We look forward to our next play date. Shira had so much fun she cried when the play date was finished. We are so happy for Shira that she has found some new friends.

August 10, 2008

Last night was international SMA remembrance day. The day always makes us a little anxious because it is a day filled with hope for a cure and knowing with the right therapies our daughter will not die an untimely death. The day also reminds us of all the kids that have been lost to this terrible disorder. We have had very close friends loose their children and it only serves to remind us of Shira's mortality and the reality of this terrible disorder. We pray for a cure or a miracle. Prayers to all the angels in heaven and all the parents that have lost these angels. Look down on our Shira and keep her and all the other's here healthy until we find a cure!! We are thinking of all of you tonight and always

August 08, 2008

Hi everyone. Things have been good here. Everyone is healthy. I have added a couple of new photos. Thanks to everyone who checks in and is thinking about Shira and us! We greatly appreciate the support. I'm so proud of Maxine. Maxine made challah for the first time today. It's not the biggest deal but it does bring a level of spirituality into the house on Shabbos.

August 6, 2008

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

Today (Wed) Shira, Maxine and I walked around a golf course that has a trail and duck ponds. It was really hot out and the walk turned into more of a sweaty work out pushing her stroller over a bark mulch path; All in all a really nice day.

On another medical rant I came across something in a book I have been reading called "The Second Brain" by D. Gershon, M.D. The premise of the book is about how the stomach is not controlled by the brain and how it functions with and without the brain controlling it. I found the premise interesting because Shira's brain isn't able to send its signals throughout her body and so I'm hoping there will be some clues within the book that might lead me to some ideas as to how I can improve Shira's diet etc. Since Shira is missing certain cells that the brain uses to send signals to muscles I thought the book would also shed light on how Shira's digestive system is still able to work to such a high degree.

But what I really want to talk about is something Dr. Gershon sheds light on at the very beginning of the book. When I wanted Shira to start using the cough assist Dr.'s were literally trying to talk me out of it saying its unproven, there's no empirical evidence and that the machine is an old idea brought back. Here is what Dr. Gershon has to say about old ideas. "Those of us who deal in science, even the most enlightened of us, have a strong and objectionable tendency to hubris. Hubris for scientists comes from an inadequate knowledge and appreciation of the past. Discoveries are thus made and claimed that are really rediscovered - not new advances at all, but history lessons." "I have to concede priority to people who came before me. Rediscovery is every bit as good as discovery, If what is rediscovered is important and was forgotten. It is better still when the rediscovered information has the capacity to improve the lives of those around us."

It's comforting to know that somewhere in the world there are real scientists with open minds thinking about truly helping people even if it means using someone elses old ideas in a new way.

On another note, apparently Sam told his councillor at sports camp today that he reminded him of Dave a councillor from Sponge Bob Camp except that he had a different face. I just love kids!!!!!

Keep up the good fight everyone.

August 3, 2008

Today was a weird day. We just couldn't get it together. The energy all around us was off. Have you ever had that feeling that you just weren't in step with your surroundings? We had good intentions. After waking and going through the morning routine of waking up, Chest Physio therapy and just getting out the door which can take 2 hours we drove down the road to a farm near our home. The place just had a bad feeling. The animals were behind fences (some petting zoo) and it just drove Shira nuts. When Shira cries she chokes and too much crying just leads to desating (vital signs start to go down because of all the choking). I guess i'm really tense because I read a letter from one of our doctors last year that said, 'Shira is doing well as she must be a stronger Phenotype.' You can read what that is here http://en.wikipedia.org/wiki/Phenotype
You know, when Shira was first born the neurologist looked at her and told us she was so weak she probably wouldn't live a year. Now that Shira is 3 she is considered stronger. None of the medical professionals really discuss the care she gets and the effectiveness of Dr. Bach's NIV Protocol because he is an unproven quack.

All us SMA parents here the same thing 1) your child is so weak take them home and love them until they die 2) No you can't put your child on the AA diet its unproven 3) No you can't use the cough assist your child is too young, too weak, you'll give her a pneumothorax (blow out her lung) 4) There's nothing you can do for your child and on and on.

I just get so pissed off when another parent phones or writes me from another part of the world and I hear the same BS come out of the mouthes of these doctors with absolutely no experience in the care of SMA patients through the patients life. And the poor parents see all of us with our older kids and they scratch their heads because if they apply what they are being told and then look at us you start thinking that someone is not telling the truth.

I know how hard it is to fight against a system that is supposed to be helping you. A system that runs on conventional wisdom with all research carried out behind closed doors until a cure is found. We don't here about what happens to all the patients that are tested on we only here about successes.

Then what about the patients that suffer from serious stuff life Shira where they are actually missing genes. Cancer can be cured and you can live with it for a long time because you are a whole person with the added cancer. I'm not downplaying the terror and everything else cancer brings including death but you have a chance of being cured or and going into remission. I'm no fool and I see SMA patients dying left and right, there is no cure and life expectancy is short. The problem i have is that the medical system doesn't like this sort of patient. The medical system likes the patients where they have a chance to live. You hear about how effortlessly and quickly the medical system here responds to cancer patients. I rarely see a cancer patient in the news advocating for their life but I see parents with children with disabilities or families with geriatric parents in the paper advocating all the time.

What is this? Are we only survivalists? Do we only care about winning and not just playing the game anymore. I guess we are only a country of winners and to be a winner you have to be rich its still not ok to be Joe Shmoe and be a winner you have to be a movie star, rock star, business tycoon, habitual bank robber on CNN, and you have to be rich or famous!!! And when you are famous you get service even if you are a real bad but famous criminal, you get quick and effective medical care should you need it.

Now i'm not saying that we don't have what we need now because we do but I relive the terror of loosing my child every time a newly diagnosed family calls me for help wondering how I got what I have for Shira.

I've decided to post the Hippocratic Oath both the old and new maybe if you are having trouble with your doctor you can give him a copy.

Hippocratic Oath -- Classical Version

I swear by Apollo Physician and Asclepius and Hygieia and Panaceia and all the gods and goddesses, making them my witnesses, that I will fulfil according to my ability and judgment this oath and this covenant:

To hold him who has taught me this art as equal to my parents and to live my life in partnership with him, and if he is in need of money to give him a share of mine, and to regard his offspring as equal to my brothers in male lineage and to teach them this art - if they desire to learn it - without fee and covenant; to give a share of precepts and oral instruction and all the other learning to my sons and to the sons of him who has instructed me and to pupils who have signed the covenant and have taken an oath according to the medical law, but no one else.

I will apply dietetic measures for the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice.

I will neither give a deadly drug to anybody who asked for it, nor will I make a suggestion to this effect. Similarly I will not give to a woman an abortive remedy. In purity and holiness I will guard my life and my art.

I will not use the knife, not even on sufferers from stone, but will withdraw in favor of such men as are engaged in this work.

Whatever houses I may visit, I will come for the benefit of the sick, remaining free of all intentional injustice, of all mischief and in particular of sexual relations with both female and male persons, be they free or slaves.

What I may see or hear in the course of the treatment or even outside of the treatment in regard to the life of men, which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about.

If I fulfill this oath and do not violate it, may it be granted to me to enjoy life and art, being honored with fame among all men for all time to come; if I transgress it and swear falsely, may the opposite of all this be my lot.


Translation from the Greek by Ludwig Edelstein. From The Hippocratic Oath: Text, Translation, and Interpretation, by Ludwig Edelstein. Baltimore: Johns Hopkins Press, 1943.

Hippocratic Oath-Modern Version

I swear to fulfill, to the best of my ability and judgment, this covenant:

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and
understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say 'I know not,' nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humbleness and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these
related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with
affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.


Written in 1964 by Louis Lasagna, Academic Dean of the School of Medicine at Tufts University, and used in many medical schools today.

August 2, 2008

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

On another weird note one of my pet peeves that has been bothering me is that where ever we go people see Shira and automatically assume she's sleeping because she is laying down. A couple of very old woman walked past us today saying, 'Oh look at her she's dead to the world.' My heart just sank. I know that they didn't mean any harm by what they were saying but in my head I was thinking, 'you don't know the half of it.'

Nobody really understands exactly what Maxine and I do with Shira. Most people just think Shira is sick and that's it they don't realize we actually keep her alive by the Intensive Care we give her throughout the day. No matter how many times you explain it to some people they just don't realize that you can't leave these kids alone un monitored.

I know that some people think we are over reacting with Shira. They know she is really sick and supposedly has a terminal illness because she is so happy when they see her they don't realize we are giving her hands on 24 hour intensive multi disciplinary care to keep her looking so cheery, happy and freakn' alive!!!!!!!!!!!!!!!!!

The day was good except for the usual freaky human contact I so dread when I go out into world. People mostly suck and really are totally indifferent uncaring, and more interested in themselves than anything else.

Anyways, B'H Shira is well, happy, here and if I had to cut both arms and legs off to keep her here I would in a second.

Tomorrow is supposed to be nice weather as well so we will carry on with our weekend celebrations of our wonderful city. Sam had a blast today and Maxine was a trooper for getting out of the house for a while to help relieve my cabin fever. Keep up the good fight everyone.

August 1, 2008

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

July 28, 2008

Today wasn't that eventful we just played with Shira around the house, the usual routine that kids like to do through the day: lots of reading, art, playing with toys, side lying, standing in the standard etc. Sam went to gymnastics camp in the afternoon but the poor little guy was stiff from riding yesterday. Sam woke up and staggered out of his room saying, "why do my knees hurt" and rubbing his legs. I had to explain to him that you use different muscles when riding. I remember those days of not riding for a while then you get on the horse and the next day you can barely walk. On another note, Shira's left hand is starting to contracture quite severely so I have put in a request to get Shira night splints. We are slowly working on the power chair but it needs some more adjustments to the head gear but Shira will do great. We are looking forward to the first week in August when we will be trialing a computer with eye gaze system for Shira. That's about it. Our injured cat Lila is back to her old killer self. Maxine is a little run down and has a minor cold. That's it that's all.

July 27, 2008

What a day. When we woke up it was completely over cast and looked like it was going to rain. Our plans for the day were to take Sammy and Shira horseback riding in the morning and try and make the Chabad picnic at 4:30. It's always difficult to plan anything for the afternoon with Shira because she really needs her ventilator breaks to recharge. I advise all parents to definitely give their children bipap breaks through the day. You don't want to burn our kids out just to make them as regular as possible. Our kids have SMA and need support through out the day. Anyways, we had a great time at the stable. Sammy road in the ring and then I led him around the property. Sammy rode for about 45 minutes which is good considering he hasn't been on a horse for over a year. Shira was so excited. One of Shira's favourite videos is Elmo's Wild Wild West video. Shira has picked up some cowboy lingo and she loves to say, "Yeehaw, Giddyup, Yahoo." She is so cute. When that big grey draft horse stuck her head in Shira's face Shira just beemed. That huge horse was so gentle. We made it home by about 2 o'clock and Shira went down for a nap. At 3:45 we woke Shira from her nap which we never do to go to Sammy's summer camp final barbecue. Shira had a bit of a hard time with the extremely windy conditions at the beach but we were there for about 2 hours. When we arrived home Shira wanted to stand in her standard so we did that for about an hour and a half and watched elmo and different things on the computer together. At 8pm the usually routine with Chest Physiotherapy, bath, hair combing, teeth brushing, preparing her food for the night, etc. then back on bipap at about 10:20 and here I am writing in our diary. That was our day. And so it goes (to borrow a phrase). Just so everyone knows Maxine took all the photos today so that is why it is the Sammy, Shira, Daddy show today.

July 24, 2008

Well the last 2 days have been extremely stressful. Where we got the idea that we could have another pet is beyond me. I guess we just want to give our son and family every regular household has but in reality we couldn't deal with the added stress of another animal in the house; I guess I'm enough! 2 days ago at 6 in the morning I am woken up by the horrible stench of feces and as soon as I opened my eyes I saw the culprit; our little baby cat David. There was feces all over the pillow next to my head and it was stuck between the poor little guys paws. Under regular circumstances I can deal with this type of stuff but when you sleep as little as I do and have no free time as I do I just couldn't handle the fact that we have something else we have to care for. Some families have many more children and several animals but I can't deal with it as I want to spend any extra time I have with my son and my music etc. Needless to say I had to wash the poor little guys paws under the faucet and we all know how much cats like that. After cleaning the kitty litter boxes I went to throw the dirty litter bag onto the front stoop to be taken out later by Maxine when all of a sudden the cats slipped out between my legs and I was so tired I didn't see it. As I walked back up my front steps inside the house I noticed how quite it was and realized I had let the cats out. I looked out front and couldn't find them and as I walked around the side I saw David but not Lila. I wasn't worried about Lila being a full grown cat. As I walked towards David of course he started to run from me so I ran and dove on him which didn't impress him. I haven't had to make a full on tackle for a while but lucky for me I had lots of weeds around the side of the house that the cat got caught up in as he saw me flying through the air towards him. I caught him safely and brought him into the house only to notice that he had even more feces stuck between his back toes and dried all over his fir so we had to do the bath again. I finally got him all cleaned up but I realized this is not fun and the stench in the house was out of control. Under regular circumstances I can deal with this but you have to realize that Shira lies on the floor all over the house and we have to suction her therefore we have to keep a decent level of cleanliness within our home. What is suction? We stick a suction catheter to the back of Shira's mouth and suck out the secretions just like at the dentist but further back. So, we no longer have the cat. If the kitten was our only cat we would have kept him but since Sam already has a cat he chose from the SPCA it was hard for him but he understood and he still has a cat. Live and learn is the name of the game but we are often reminded of Shira's disability or our limitations due to dealing with Shira's disability. Its hard not to consume, consume, consume in our society and we have been living very low for a few years now. We are in unchartered territory here living and caring for Shira so our main course has stayed true with keeping life as regular as possible for Sam and delivering Shira the highest level and best care.

On another note. Maxine's mother Ruth was here for the last 2 weeks. Both Sam and Shira had the best time with Ruth, reading, singing, going to Playland in Vancouver, playing at the park and the days Ruth spent with Sam at Camp Gan Israel. I know they will miss their Bubby very much as well as Maxine and I. Thank you for the joy you bring to the kids Ruth!

July 21, 2008

Today was a usual day except for the fact that Maxine and I got out on a walk together with Shira of course. I never leave Shira. As I am the best one at reviving Shira when she crashes I have to be close at hand and Shira is always with me. The only time I leave Shira is for a haircut or to go to the doctor and then Shira is on her bipap at nap time. Maxine is proficient at looking after Shira but I have always been the one that can bring her back from the extremely low vital signs. We went for a walk in our neighbourhood and stopped at Starbucks for a cold drink.

Yesterday was a day when all the fears for Shira and her life show up and there is nothing you can do but sit with all those fears of what her death might look like, what life might look like after death, how it might affect our son etc. Its just terrifying stuff. It's a lonely road looking after someone so ill. Most people really just don't have the time of day for healthy regular people let alone someone that needs the support Shira needs or her caregivers need. People mostly suck when it comes to giving a piece of themselves but I have learned once again how totally selfish the human race is. All you have to do is read books like, "How To Win Friends And Influence People" by Dale Carnegie to really understand that. I got this book when I was 16 and have read it over 30 times in my life and again recently. The whole premise of the book is how to manipulate people in a way that makes them think you like them. Really your supposed to find some trait you do actually like in a person and focus on that so you don't come across as fake. Its really a pitiful statement of society in general because it really focuses on getting what you want out of other people.

Acceptance is a very hard thing to do and accepting other people's weaknesses when it comes to accepting something out of the norm such as a disability; and its especially hard under these circumstances. Having and giving compassion to others while you really need it is the most challenging position I have ever been placed in. People will call me up, tell me about their life, their worries, their losses, their business problems and not even ask about Shira and how its going. It just sucks the life right out of you sometimes. I was going to sensor myself on this web site but again why should I. This web site is set up to help the countless people that have kids like Shira and I'm not going to white wash how incredibly hard it is to care for a child like Shira. The fact remains that the hardest part of caring for someone who is sick is the lack of compassion and emotional support from people. You think when this happens to your family that systems and family are in place and for some it is true but of the many, many families I have spoken to most of them feel abandoned or that the shelf life of compassion and understanding for their situation is about the same as the apples in your refrigerator.

Then you have those that will tell you that you chose to care for your kid, you could have let them die and you wouldn't be in this predicament. Well, those people are on my do not resuscitate list and should I see them lying on the street I'll be sure to step over them as I pass by them watching them gasping to live. That's what I would like to think anyways and that is my reaction to how that statement and those people but in reality I would and do help anyone in trouble.

All I can say is thank god to SMA Support, Youtube, etc. that have given me the ability to reach out and be reached by other parents of SMA children. Without other parents that have experienced what we are experiencing we wouldn't have a bench mark to use to navigate through the insane waters of the medical system. Other parents have been buoys that keep us off the rocks of our mostly incredulous society. We have met some wonderful people but most are indifferent. This journey has been an interesting forced study in society, social matters of conscience, inter personal relationships etc.

I'm going to constantly remind people to reach out to people. In the words of the Dali Lama "It is not enough to be compassionate. You must act................When there is something that needs to be done in the world to rectify wrongs with the motivation of compassion, if one is really concerned with benefitting others, it is not enough simply to be compassionate. There is no direct benefit in that. With compassion, one needs to be engaged, involved." - The Fourteenth Dalai Lama

So find a person, a family etc. a kid, and make them your project. Many people have asked if I do this and yes I do this. There is nothing that eases the pressures of our situation more than reaching out to others and helping them get through there challenge. So don't wait reach out to someone today and consistently, go past the shelf life.

Yesterday we had Sam's councillors here from his camp Camp Israel and they played with Shira and Sam for a couple of hours. Shira really enjoyed herself and she wanted to stand in her stander and show them what she can do. The day ended uneventfully which is always good news in the SMA world.

July 21, 2008

The story below is a worldwide problem. Its not a story about racism but a story of people's value systems. I experience the indiference of people everyday walking around with Shira. The indiference shows up when you see people you know that you haven't heard from in years and they tell you they have been thinking of you but if you hadn't run into them you would never have known. The people at the baseball game that move away from the cripple. The people that only want smiley faces and everything good unless its in their back yard. What ever happened to community? What has happened to people reaching out to each other and being supportive, not financially but emotionally. What ever happened to decensy? Anyways this article just hit home with me because I see it everyday and it has to do with how people react to my daughter and it really pisses me off.

Italian outrage over Gypsy drowning photos

• Story Highlights
• Italian outrage over photos of sunbathers at a beach where two Gypsy girls drowned
• Photos showed girls' bodies lying on sand covered in beach towels
• Newspapers report beach goers eating lunch, sun bathing as bodies carried away
• Incident occurred amid heightened tensions between authorities, Roma minority
  
  

(CNN) -- Italian newspapers, an archbishop and civil liberties campaigners expressed shock and revulsion on Monday after photographs were published of sunbathers apparently enjoying a day at the beach just meters from where the bodies of two drowned Gypsy girls were laid out on the sand.

The bodies of two drowned Gypsy girls were laid out on the sand under beach towels.

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Italian news agency ANSA reported that the incident had occurred on Saturday at the beach of Torregaveta, west of Naples, southern Italy, where the two girls had earlier been swimming in the sea with two other Gypsy girls. Reports said they had gone to the beach to beg and sell trinkets.

Local news reports said the four girls found themselves in trouble amid fierce waves and strong currents. Emergency services responded 10 minutes after a distress call was made from the beach and two lifeguards attended the girls upon hearing their screams.

Two of them were pulled to safety but rescuers failed to reach the other two in time to save them.

The Web site of the Archbishop of Naples said the girls were cousins named Violetta and Cristina, aged 12 and 13.

Their bodies were eventually laid out on the sand under beach towels to await collection by police. Photographs show sunbathers in bikinis and swimming trunks sitting close to where the girls' feet can be seen poking out from under the towels concealing their bodies. A photographer who took photos at the scene told CNN the mood among sunbathers had been one of indifference.

Other photos show police officers lifting the bodies into coffins and carrying them away past bathers reclined on sun loungers.

"While the lifeless bodies of the girls were still on the sand, there were those who carried on sunbathing or having lunch just a few meters away," Italian newspaper La Repubblica reported.

Corriere della Sera said that a crowd of curious onlookers that had formed around the bodies quickly dispersed.

"Few left the beach or abandoned their sunbathing. When the police from the mortuary arrived an hour later with coffins, the two girls were carried away between bathers stretched out in the sun."

The incident also attracted condemnation from the Archbishop of Naples, Cardinal Crecenzio Seppe. "Indifference is not an emotion for human beings," Seppe wrote in his parish blog. "To turn the other way or to mind your own business can sometimes be more devastating than the events that occur."

Recent weeks have seen heightened tensions between Italian authorities and the country's Gypsy minority amid a crackdown by Silvo Berlusconi's government targeting illegal immigrants and talk by government officials of a "Roma emergency" that has seen the 150,000-strong migrant group blamed for rising street crime.

That has provided justification for police raids on Gypsy camps and controversial government plans to fingerprint all Gypsies -- an act condemned by the European Parliament and United Nations officials as a clear act of racial discrimination. Popular resentment against Gypsies has also seen Gypsy camps near Naples attacked and set on fire with petrol bombs by local residents.

In a statement published on its Web site, the Italian civil liberties group EveryOne said Saturday's drowning had occurred in an atmosphere of "racism and horror" and cast doubt on the reported version of events, suggesting that it appeared unusual for the four girls to wade into the sea, apparently casting modesty aside and despite being unable to swim.

"The most shocking aspect of all this is the attitude of the people on the beach," the statement said. "No one appears the slightest upset at the sight and presence of the children's dead bodies on the beach: they carry on swimming, sunbathing, sipping soft drinks and chatting."

July 19, 2008

Today was a nice day. We started the day as usually with CPT then Physio. After physio I put Shira in her standard and chased Sam around the house. Then we all went onto the back porch and spent some time outside while Shira was in her standard. Shira spent a lot of time with her Bubby today reading and playing. After our naps we all spent a lot of time in the living room putting together puzzles, reading and just hanging out together. Our full grown female cat Lila disappeared all day and we couldn't find her then Maxine noticed Lila in the window of our neighbours garage. Fortunately Lila was not lost and she returned home hungry and that's it. Our newest addition to our house is our new male cat that Sam named David. I don't know why he chose this name but I think it has something to do with King David he learned about in Hebrew School. We all said Havdalah tonight which was nice. Usually its just Shira and I at night. Shira loves the candles and songs. That's it. And so it goes.

July 19, 2008

Laws Of Visiting The Sick

July 17, 2008

Wow, what a beautiful day!! Shira had her power chair delivered today. We still have a couple of things to do on the chair but for the most part it is done. For all you newer SMA patients out there many of our kids can better manage their secretions as they get older. As I mentioned yesterday Shira has been using her standard every day now. The positioning in the chair is quite a bit different so it will take some time for Shira get used to the chair but once she gets the hang of it I know she will be begging to get in the chair often. Right now our local senior mens baseball league is in playoff mode. Shira and I went to a game tonight. Shira absolutely loves baseball. Baseball is an amazing sport. After watching a couple of innings you feel like you have been transported to a different time. Baseball flows very differently than contact sports. Most of the time the ball is driven low and hard and caught for an out or popped up for an easier out. Every once in a while plays take great skill, agility and strength. Shira has really connects to baseballs flow and mellowness. I'll never be able to watch a game again without it reminding me of my daughter. I almost forgot. Sam and Maxine brought home a kitten from the pound today. The cutest little male cat with smooth fur mixed with spiny fur. The cat has black stripes and looks similar to our cat Lila. I'll post a photo soon. Sam picked out the cat. We let Sam pick the animals as he seems to possess an uncanny abi