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.

It has been a while since I have done an update mostly because we haven't had much help around here until recently so my time was limited.  I have finally laid down the law with myself and started getting outside with Shira no matter what the weather is like.  I have purchased a down mummy sleeping bag from Mountain Equipment Co Op which works fantastically for Shira and her equipment.  I am able to run her food line and Oxymeter chord through the double zipper at the bottom of the bag.  This allows me to put Shira in the bag and completely cover her from head to toe with nothing exposed thereby allowing us to venture out below 4 degrees Celsius.  Last year I was putting Shira into a snow suit which sometimes would give me a nervous breakdown by the time I was finished getting her into it.  It's hard to put someone that can't move their limbs into such a confining space.  The sleeping bag just unzips and I lay her into it and zip it up and go.  We also have really great rain screen protection for the stroller so we are set now and have been out every day rain or shine.  Today we went on a 4 hour walk.  During our walk we went through Mt. Doug Park a 400 acre park with a mountain a block from our house.  While there we ran into lots of people with dogs and 5 people on horse back.  Shira loves horses and dogs so it took us some time to get through the park.  There is a 60 mile paved trail through Victoria called the Galloping Goose trail.  Once through the park we took the trail through farm land, a sub division and finally to a strip mall and did a bit of shopping and picked up a video for Shira and then made our way home.  Some days we go out in the pouring rain and Shira seems to really enjoy it.  The rain can be a little challenging when suctioning Shira in her stroller but we are able to manage with only getting slightly wet. 

The other big news in our life is that our Occupational Therapist has arranged and organized a preschool for both Shira and another younger girl with SMA Type 1 named Charlotte.  The class is formal and takes place at the Queen Alexandra Rehab Hospital once a week.  The class room is closed off and cleaned on a Friday and not re opened until the Tuesday of our class for our class.  This is to ensure that the room is germ free.  Shira is loving the classes and being around other people.  Shira is so enthusiastic about learning.  Shira is only 3 years and 5 months old but she knows her whole alphabet upper and lower case, can count to 20 and 10 in Hebrew, knows her Aleph Bet (Hebrew alphabet), prayers in Hebrew, and can spell if you sound out the word.  Shira is a smart little girl and has a deep desire to learn.  Shira is also extremely playful and loves to spend time playing dress up, do arts and crafts, play make believe with Sammy her brother and she loves sports.  Shira loves baseball!!!  I can't wait for summer again so we can spend day after day at the baseball diamond.  Anyways back to school.  So at the school either Shira's Occupational Therapist or her Physio Therapist are there to assist the Teacher.  Shira loves her teacher Susan and is totally into the concept of school.  With all my justifiable complaints about the antiquated conventional medical system I have to say that the school and arrangements made for germ control are really first rate.  I have to give the credit to Susan our Occupational Therapist she has really done a fine job arranging all of this and really put something into place that has really increased Shira's quality of life!!! 

Tonight Maxine was out performing as an elf at a mall that was doing a fundraiser for children's hospital so I was at home with Sammy and Shira.  Sammy is so great with his sister giving her hugs and kisses and calling her sweety all on his own.  Shira just loves Sam.  Shira beams a brilliant smile when her kisses her.  Sammy loves kung fu panda and we were on the web site and he explained the whole movie to Shira and who and what all the characters can do.  It's really beautiful to watch how gentle and loving he is to his sister.  I'm very proud of my son!  It's amazing to watch how such a young boy can be so sensitive, understanding and aware  of Shira's needs.  For many of you that haven't  met Shira she is very weak and for a reference point is extremely disabled.  The only description of Shira's care that makes any sense is Dr. Bach's  "Intensive Multidisciplinary Care." 24/7 one on one care with eye contact.  My son is so aware of how fragile she is.  It just make your heart break with the most expansive breadth of joy and the deepest darkest sadness all at the same time.  I can hear Shira singing a Hebrew song in the room next to me over the monitor as I write this.  Shira is on her BiPAP (Bi level Positive Airway Pressure)  or non invasive ventilator so I can leave the room when she is on her Oxymeter which reads her vital signs and has an alarm should she crash and I can see her in our video monitor.  Ok, Shira is about to sleep and then I will relax doing something mindless like watch t.v.  Have a good week everyone and thank you for checking in!! 

October 06, 2008

Today Shira and I were downtown. While there I took Shira to our favorite local toy store. Shira wanted a bunch of barn yard animals so we chose a bunch. I had been in this store many times through the years and have always gone there first to support local business. I noticed at the cash register it said 25% off starting next week. I asked the cashier if we could have the discount because its hard for me to get downtown with Shira. She said no. I then told her that Shira has a terminal illness and I didn't understand why they couldn't make an exception considering there was a store wide sale the next week. There was also nobody else in the store. The clerk went into the back office which was open and we could here her ask the stores owner if we could have the discount. You could here the owner say, "no its against company policy." The clerk returned to the counter and informed me that it was against company policy. So, I let her ring up the itemes, run them through on my credit card and then I informed her that I decided I didn't want the items. Now I can understand not getting 25% off if I was just asking for it but in this case there was a sale next week. a sign on the check out counter and i informed them that it was difficult for me to get downtown with my daughter who suffers from a life threatening illness and they just said no! I will never shop there again and I will spread the word. The heartless store is called Kaboodies located at 1320 Government Street Victoria, B.C.  Canada phone: 250-383-0931 www.kaboodies.ca Please spread the word that this is a heartless business person. I ask that everyone boycott this store this Christmas season and hopefully forever!! Please spread the word. I'm pissed!!!!!!!!

September 25, 2008

THE SHOFAR BLOWER -Kadya Molodowsky

The shofar blower keens a melody,

An old melody to G-d.

Above him-

A sky without stars,

Primordial darkness lost in darkness,

The shofar blower keens a melody:

Teki'ah, Teru'ah, Shebarim.

The blackness-a wind, a wall,

There is no congregation,

No quorum at all.

The shofar blower keens a melody

An old melody:

Hallelujah.

Near him, an extinguished thorn,

As he stares into even blacker darkness,

The shofar blower keens a melody,

An old melody,

And waits-

The thorn shall begin to burn,

A flame shall inscribe on a wall.

Above him, a sky without stars,

And primordial darkness,

And deadly venom.

But this does not interrupt,

Does not silence the horn:

Teki'ah

Teru'ah

Shebarim.

September 19, 2008

It's been a good week. Sammy is in his second week of grade 1 and loving it! Sammy starts soccer this weekend. He actually asked to play in a certain league because his friends are playing in it. What a guy. This week the kids next door made a little zip line they were playing with in their garden and they wouldn't let Sammy play so I took Sammy to Home Depot where we purchased 50 feet of rope, a pulley and doweling to make our own zip line. I strung the line from the porch to a tree 25 feet away. Well the kids wanted to come over and play in our yard where Sammy was king (the little buggers). Now we always have kids in our yard flying across the yard. Yesterday they were zipping over the yard and landing on the upside down blow up pool. Maxine made another beautiful challah. Nothing like home made challah cooking in your home. Maxine is so beautiful and amazing to us. She really keeps everything running while i'm concentrating on Shira. She keeps Sammy's life 'Normal.'

Shira almost has the entire Hebrew Alphabet down. At the moment Shira knows the entire english alphabet in any order and numbers up to 20 in any order read off of flash cards. I'm working on reading and its coming as well as addition. Physically Shira is doing great. Her physio sessions 2 times a day I think help her a lot. We are using our standar more all the time and still working on power chair driving skills.

That's about it from our end. We are all healthy as we head into the dreaded flu season. Last year I only spent 4 weeks seperated from Maxine and Sam and I pray that this year will be less. The year before last I spent 7 weeks downstairs quarantined but Shira hasn't had a major illness since her RSV hospitalization when she was 6 months old. Keeping my fingers crossed and I just knocked myself in the head.

Oh yeah. Shira and I got a chance to watch some good baseball last week. Boys about 15 years old. Pretty good ball but the boys aren't all that coordinated at that age but you can really see the talent emerging. Whenever we go to these games we always seem to clear an entire bleacher of seats once we get suctioning etc. I have a microphone and speaker for Shira so she can yell obscenities at the umpire.

If you are looking for something good to read check out Zora Neale Hurston; absolutely amazing writer!!

Have a good weekend and shabbos. Brad

September 14, 2008

Breathing

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 ability to choose animals with great dispositions. That was our day: Blue skies, baseball, our new power chair, and the new addition to our family.