Monday, June 29, 2009

Shira's 4th Birthday Party Video

video

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

Mommy, Daddy, and Sammy.

Tuesday, June 16, 2009

Spinal Muscular Atrophy Shira Fisher Turns 4

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

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

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

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

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

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

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

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

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

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

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

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

Love Mom, Dad and Sammy

Thursday, June 11, 2009

Shira's 4th Birthday Party

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

Monday, June 8, 2009

Charlotte and Shira On Mt. Doug




I think this photo just says it all!

Tuesday, June 2, 2009

Weight, Height, Growth-Spinal Muscular Atrophy

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

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

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