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).