March 02, 2013
Wow it has been a long time since I have posted a journal entry here. There have been many many made in other places but I have neglected this site so here is a quick update. Shira is now 7 and is 50 inches tall and weighs 46 lbs. Shira is homeschool with an educational assistant supplied by our local school system 2 hours a day 5 days a week and is in grade 2. As far as computers go Shira uses the mytobii p10 and is loving it. We are able to use 3rd party applications with the eyegaze system though sometimes we have to use a microlite switch as the right click along with the eyegaze. Every Wednesday Shira rides horses at the Victoria Therapeutic Riding Association. Riding is a lot of fun but tough it takes 4 of us so that she can ride. I use an obus form back rest adapted with Velcro to hold the existing straps in place for her arms and another belt holding the straps across her chest. Maxine also attends these sessions working with Shira as she rides.
Everyday I give Shira physical Therapy while on vibrating massage matts, Chest Physio Therapy X2, Beckman Motor Oral Therapy. Shira’s diet is updated quarterly or as needed and she is still on vivonex on the AA Diet. I don’t give Shira processed food other than the vivonex and prune juice and supplements the rest of the diet is whole foods and juices.
Finally we have been approved for the Trilogy Ventilator so I’m hoping in a week or so we’ll say goodbye to the bipap. March is now here and on Monday I will weed the garden, order some soil and we will plant it on time this year! I can’t believe I’m cutting the grass and working in the garden already.
To keep myself together since I’m in the house so much and my days are 17 hours long minimum I’ve been practicing Ashtanga Yoga. Yoga is a great way to keep your mind, body and spririt together and you can do it for free in your own home without exposing yourself to disease. I highly recommend yoga for keeping it together while you are caring for your children!
That’s it for now. I’m going to be really ramping up this blog so stay tuned!
Tuesday July 7, 2011
The Bridge Of Life by Brad Fisher
Lech Lecha. G-d said to Avraham, “Go (further) away-for your (own benefit)-from your land, your birth place and your father’s house, to the land which I will show you.(Parshas Lech Lecha)” I’m not the most religious Jew but I am spiritual and I identify deeply with my culture and heritage and religion. I’m the father and main caregiver to a 6 year old beautiful little girl who was only given 2 years to live. There are moments I deeply identify with Avraham being sent by G-d to an unknown land. I just returned from a Canada Day celebration that we were not able to attend at the last minute because our daughter Shira lost her vital signs and went into respiratory arrest as I was parking at the event. It’s moments like these I feel I’ve been sent to an unknown land. I don’t have time to think of anything at times like this but work on our daughter and make her live. I suctioned the secretions from her mouth like mad with one hand while pulling the thick secretions out of her mouth and nose with my other hand. I was standing on the edge of the abyss again watching our beautiful little girl slip away into G-d’s hands as I desperately worked on her to keep her with us. Our daughter suffers from the number one genetic killer of infants and toddlers called SMA Type 1 or Spinal Muscular Atrophy Type 1. 1 in 40 people carry the gene and one in 5000 babies are born with it. It is considered such a serious threat that it’s included in the updated version for the genetic screen for Ashkenazi Jews even though the rates aren’t higher for this population over the rest of the population. At 4 months of age Shira was diagnosed with SMA because we noticed she was not meeting regular physical developmental milestones. Days like today (reviving our daughter) are not uncommon and our lives are governed by the 24 our multi-disciplinary intensive care we deliver to our daughter Shira. I’m crying as I write this, tearful, fearful, shaken to the core of my soul once again. I hear our daughter’s beautiful little voice echoing from the other room as she lays on the floor playing with her bubby.
When Shira was diagnosed we were told, “There is nothing you can do just take your child home and love her until she dies.” In some ways this statement echoes true for all of us even those of us with regular healthy kids. We all take our children home and love them until they or we die don’t we. What a thing to say to a patient and her family. Shouldn’t the more appropriate response after diagnosing anyone with a terminal illness be we can’t cure your daughter of this disease but we can support you in caring for her and help you deliver a high quality of life to her? What drives doctors to be so HOPELESS? In our world we believe there is only endless HOPE not a hopeless end. There is also a big difference between delivering daily care to a person with a life threatening illness and just diagnosing them with an illness. Most doctors have never had to care for a sick human being they just advise other’s on what to do and I’m sure 50% of the time the advice is riddled with personal biases and no experience to base the advice on. We have only met one doctor who said, “I have no experience with this illness but together we will find out what to do, create a plan and implement it.” We have realized that doctors are people to and suffer from the same daily afflictions the rest of the population suffers from and so great care must be taken when prognosis and advice is given. You must be on your toes and advocate for your child at every moment, due diligence becomes second nature and conventional wisdom must be locked away.
When death is near and has been fended off again you can’t help but feel you are walking on the Bridge Of Life (Gesher Hachaim). It’s thought that the bridge of life is a bridge between past and future. When people ask me if I have received any gifts from my experience caring for our daughter or learned anything I respond with, “ I have never been so present, I don’t have time to think of the past and I certainly don’t think of the future because the future almost always does not include being with our beautiful daughter. Being completely present, in the moment, aware of our daughter’s breath, this is the gift!” “ (Tehillim 34:13) If someone wants to live (a true life), he must “love days” – love his days to the extent that they should not be lost, but remain preserved for him(Gesher Hachaim by Rabbi Tucazinsky).” Another soul shaking lesson I have learned is visit the sick. Compassion without Action is empty and one must act and actually do something that will benefit someone in need. Bikkur cholim or Visiting The Sick has become a passion of mine. Until our daughter was born I’m afraid I did not do my share of visiting the sick. If I could pass on any advice from our families experience it is to reach out, visit and help out those in need after all it’s a Mitzva (good deed). We have felt so lonely at times, abandoned, and left out. Yes illness is scary but you will find when you get to know these people, children, with life threatening illness you will increase the joy and remove a lot of the oye from your own life. Another question we are often asked is what keeps you going? Why do you do this? Well we love our daughter and we would do anything for her is our reply. The second answer I give is a quote from a Hasidic Sefer (from a book titled Wrestling With The Angel Published by Schoken) I read when our daughter was about a year old that gave us comfort, peace and hope. “How will we recognize those we loved when we meet them after 120 years in the world-to-come? If they died young, will they have grown old? If they were hurt or wounded, will they have healed? How will we know them, how will they know us if we have changed or aged? The answer is that we will know them, we will recognize them because they will be clothed and cloaked in the mitzvahs we do in their name.”
Shira and her new Swing Enabling System
Shira loves to 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.”
(This device was delivered in October 2009.)
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
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, 2009CLICK 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 4th birthday! The last 4 years have been years that we would never wish upon anyone yet we are thankful, grateful and feel truly blessed by our daughter Shira. Shira is beautiful, happy, and smart but more than that Shira is a human being like all of us reading this not just a sick kid.
The biggest worry most parents celebrating their 4 year olds birthday is the stress of who to invite, how large it should be and should we have goody bags. With us each year a birthday comes along and we don’t know if it’s the last; we celebrate but we always wonder if this is the last. We try not to think these thoughts but we are surrounded by statistics, mortality rates, and watching friends loose their children to this horrible disease.
Laughter, joy, love, adventure and frustrations make up Shira’s day like anyone else. We sit here in bewilderment, awe, and unconditional love for one another. Most days we don’t see Shira’s disability. Shira’s soul and personality shine brighter than the harsh reality of Spinal Muscular Atrophy and its mortality rates.
There is much heartbreak in raising a child or caring for a person with Life Threatening Illness. Boundaries and walls are everywhere as you make your way through each day. I have never met so many people, great people as those caring for children or adults with disabilities. These caregivers meet these boundaries and walls with the clenched fist of advocacy time and time again. Life! I really never understood what a life was until we were told Shira has Spinal Muscular Atrophy Type 1, a terminal genetic disorder and that she was very weak and probably wouldn’t live to be 1.
Our story is like many stories about doctors misdiagnosing Shira saying there was nothing wrong with her, then being given no choices of care or therapies which may prolong Shira’s life or at least insure she experienced the highest quality of life, being told “There was nothing we could do so just take her home and love her until she dies.” It was a total, full blown out and out brawl of wills to get the doctors here on track to do what we wanted for Shira. Finally the doctors relinquished and got on board to help us deliver the NIV Protocol of Dr. Bach of The University of Medicine and Dentistry of New Jersey. These therapies would not cure Shira but they would help to prevent an untimely death!
We have met a lot of amazing, caring, compassionate people along the way. Our sister in law Abbey had found out about Dr. Bach in New Jersey and we felt we had to go see him. Maxine called Alaska air and while talking to the ticket agent she mentioned we had to go to NJ as our daughter was very sick. The ticket agent asked if our daughter had SMA Type 1 and this was before we had the official diagnosis back. Well we were taken aback that he would just blurt out the disease our daughter has. It turns out we were speaking to Mr. Mortenson the grandfather of a child living in Denmark! Mr. Mortenson connected his son and us and it was from this man I learned about what we were dealing with and the severity of the illness and the timely manner in which we needed to get Shira on ventilation and a g-tube before she got ill.
Our fight began at this point. I was scared to death because no doctors were listening and no one wanted to pursue the course of treatment we found out about. Maxine being the brave one in the family did not listen to the naysayers and promptly called the media. While we fought with the medical system to deliver the treatment and care we had researched Lora Stants who had lost 2 children to SMA and started SmaSupport Inc. sent us all the NIV equipment right to our door. Angela Trick a mother who had lost her son to SMA
about six months earlier than Shira’s diagnosis sent us her son Jacob’s Cough Assist Machine. The doctors here were still not convinced to use this equipment as they were caught up in medical hubris. After being in the hospital for well over 30 days I took the machine in, plugged it in, watched the video on its use and started practicing on myself. It was at this point the doctors jumped in, decided to understand the machine and how it is used and we proceeded to use it on Shira. Shira’s lungs started to heal quicker and coupled with non invasive ventilation she was healing fast. All the way along it has been a comedy of errors, lack of information, and terrible relationships with the medical profession. Everything starts as no and you have to advocate (fight) hard to get what you need for your child. I have never been involved with so many educated people giving advice on a subject they no very little about. How can people advise you on daily care when they have never cared for a child with this type of disability? It happens all the time and unfortunately the children then die untimely deaths.
Doctor Bach is my hero and I bow to him for standing up against the emdeity of a medical systems conventional wisdom on the subject of Neuromuscular Diseases and their treatment and care of them. I have learned that as much as there is science involved in medicine there is also a lot of personal feeling which go into diagnosis, prognosis as well as modes of treatment and care and these can be skewed by everything from: sickness, mental illness, addiction, relationship problems, discrimination and on and on just like the regular population.
I have had people to tell me to stop complaining because here we are now and Shira is 4. The reality is we see the same terrible advice and medical treatments being given to patients today as we did for us and to families before us. Advocacy never stops and we will never stop advocating for Shira or anyone else that needs help! We were told not to go on chat groups because the parents on them were obsessed with their children’s care! Huh! We were told not to have false hope! Hope is never false!!! We have been told that we chose to care for such a child and we got what we asked for!
The list goes on and on and it never surprises us as to what we are told as to the reasons this happened to Shira or to people’s reactions to Shira. There have been angels come to us from where we least expected and angels disappear from us from where we least expected.
We want to thank everyone who has supported us while we go about our daily life keeping Sammy’s life as regular as possible and Shira happy. Without our family and friends emotional support, our friends on Sma Support Inc. chat group support, Dr. Bach, Dr. Schroth, Dr. Swoboda, Dr. Beck, Dr. Barclay, our OT Susan Gmitrosky and PT Joan Glover, Andrea Hofmeyer, Cheryl Dawson, Jane Henderson, Marie and Kenny, Bubby Ruth and Bubby Harriet, Amy and Rafi Gelbart, Chai Lifeline, SmaSupport Inc. and Laura Stants, Help Fill A Dream, President’s Choice Children’s Charity, Vancouver Foundation, Muscular Dystrophy Association of Canada, Shira’s life would be very different. But mostly thanks has to go to Maxine Shira’s mom who makes every day possible for me to care for Shira while making sure Sammy is leading a healthy inclusive life and is not neglected in any way. It really does take a village to raise a child!!!
Happy birthday Shira “Little Miss Boops, Sweet Pea” we love you and are proud of you. You have shown us how precious life is and how to live it with dignity!
Love Mom, Dad and Sammy
Tuesday June 2, 2009
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.
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