If you know of someone sick, lonely etc. call them and make contact. Don't wait to be supportive to somebody. We no longer live in villages so we are encapsulated in our homes, walled in and surrounded by fear of loss; us loosing what we have. Being supportive to someone doesn't cost a dime it just costs a few minutes of your day.
The Laws Of Visiting The Sick - When a person is ill it is a Mitzvah (good deed) for everyone to visit him/her, for we find that the Holy One, Blessed is He, visits the sick, as our Sages of blessed memory explained the verse, "And God appeared unto him (Abraham) in the plains of Mamre, teaching us that, "He cam to visit Abraham when he was sick.Even a great man should visit a less important person even many times a day. The more one visits the more praiseworthy it is, providing it is not becoming bothersome for the sick person
The essence of the mitzvah to visit the sick, is to determine the needs of the patient to see what has to be done for him, and to make him comfortable with his friends. You must also bear in mind to pray for mercy on his behalf. - Kitzur Shulchan Aruch
Saturday, July 19, 2008
Thursday, July 17, 2008
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.
Wednesday, July 16, 2008
July 16, 2008 Update
July 16, 2008
What a great couple of days or weeks rather. The weather has been amazing and the weather though a dull subject in most conversations really affects SMA patients. Since last year Shira has been obsessed with baseball. Starting in March a teenage girls fast pitch league has been playing down the street at a local park. Shira and I sit in the stands taking in the baseball and gross out all the parents in the stands as I suction and re position Shira. I never have to worry about a place to sit. All I have to do is start suctioning Shira and that opens up a few spots. Shira loves the energy of the spectators at baseball games, the uniforms, the sound of the ball cracking off the bat, the ball flying through the air. Since the games are free and held at local parks spectators bring the dogs and Shira is crazy about dogs!!; Enough about baseball.
Shira has also taken a liking to her standard. A standard is a device used to hold a patient in place using straps etc. while you change their position from the horizontal to vertical position. It was thought that this device and standing helps a patient develop bone density. Its now known that there is very little evidence that bone density is increased but the obvious positive outcome of using a standard would be better internal organ alignment and socialization benefits from an upright position. Shira used to hate the standard and would scream and cry when placed in it. Now Shira asks for it and really enjoys her time in the standard. Its my opinion but I believe there is also a correlation between consistent physio therapy sessions that make it easier for a patient to be able to handle the standard.
On another note. I learned through another parent that a family fighting to get their child on the NIV Protocol used Shira's web site to convince doctors that the NIV Protocol is viable treatment. Unfortunately the doctors moved so slowly that the child is now in the PICU and I haven't heard what has happened to the child. Yesterday was a really fun day. Our local community of Saanich puts on a musical series in local parks for a month and last night the event was held at the park down the street. A latin band was playing and Shira and Sammy had a blast. Sam was up playing with the band while Shira had the greatest time watching all the kids and people dance. There is nothing like sun and latin music (it would have been nice to be sucking back a few cold beers or margaritas at the same time).
What a great couple of days or weeks rather. The weather has been amazing and the weather though a dull subject in most conversations really affects SMA patients. Since last year Shira has been obsessed with baseball. Starting in March a teenage girls fast pitch league has been playing down the street at a local park. Shira and I sit in the stands taking in the baseball and gross out all the parents in the stands as I suction and re position Shira. I never have to worry about a place to sit. All I have to do is start suctioning Shira and that opens up a few spots. Shira loves the energy of the spectators at baseball games, the uniforms, the sound of the ball cracking off the bat, the ball flying through the air. Since the games are free and held at local parks spectators bring the dogs and Shira is crazy about dogs!!; Enough about baseball.
Shira has also taken a liking to her standard. A standard is a device used to hold a patient in place using straps etc. while you change their position from the horizontal to vertical position. It was thought that this device and standing helps a patient develop bone density. Its now known that there is very little evidence that bone density is increased but the obvious positive outcome of using a standard would be better internal organ alignment and socialization benefits from an upright position. Shira used to hate the standard and would scream and cry when placed in it. Now Shira asks for it and really enjoys her time in the standard. Its my opinion but I believe there is also a correlation between consistent physio therapy sessions that make it easier for a patient to be able to handle the standard.
On another note. I learned through another parent that a family fighting to get their child on the NIV Protocol used Shira's web site to convince doctors that the NIV Protocol is viable treatment. Unfortunately the doctors moved so slowly that the child is now in the PICU and I haven't heard what has happened to the child. Yesterday was a really fun day. Our local community of Saanich puts on a musical series in local parks for a month and last night the event was held at the park down the street. A latin band was playing and Shira and Sammy had a blast. Sam was up playing with the band while Shira had the greatest time watching all the kids and people dance. There is nothing like sun and latin music (it would have been nice to be sucking back a few cold beers or margaritas at the same time).
Monday, July 14, 2008
Shira in Standar Video
Shira talking in her standar July 13, 2008
Shira used to hate her standar now she asks to be in it.
If you would like more information on standars you can go to
Shira's web site at www.asonginthisworld.com under the care tab and look under
Occupational Therapy/Standar
Photos of Shira July 13, 2008
Here are some photos of Shira in her standar. We use Ankle Foot Orthosis as well as Knee Immobilizers so that Shira is supported while standing. Oh yeah we also use a Hensinger Neck Brace.
Saturday, June 28, 2008
Shira Watching Baseball
Here is a photo of Shira watching girls fast pitch baseball. We watch games about 5 days a week and Shira just wants more. I love spending time with Shira at the park watching the games, holding hands.
Shira and Sam
Here is a photo of Shira and Sam. Shira is doing so well! We are so proud of Sam also . Sam graduated from Kindergarten this last Thursday. We are blessed to still have Shira with us! Keep up the good fight everyone. Brad.
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