A Song In This World

ADVOCACY

October 2005

After finding out our daughter was diagnosed with Spinal Muscular Atrophy Type 1 we had to advocate (fight) to have the NIV Protocol of Dr. John Bach implemented so that Shira would not die an untimely death.

http://www.youtube.com/watch?v=QlGICREBGhE

December 2005

The medical system in B.C. where we lived fought us every step of the way not to implement the NIV Protocol of Dr. Bach.  Even after telling them we wanted Shira vaccinated against RSV they were so slow in doing anything that Shira contracted RSV.  If the system had tought us about proper disease prevention and given Shira the RSV synagis her chances of being hospitalized would have been slim.  B.C. has only an end-of-life care philosophy when it comes to Spinal Muscular Atrophy.  I hold the system responsible for not moving in a timely manor and putting Shira on the NIV Protocol and taking proper disease prevention steps for her first long term hospital stay.

http://www.youtube.com/watch?v=DFhZr8VQguc

June 15, 2007

Shira is about to turn 1

http://www.youtube.com/watch?v=jIgQ6v0h9nQ

BIRTHDAYS

June 16, 2007

We were so freaked out by our experience with the medical system and the poor quality of care we were having birthdays for Shira every month so we missed the first birthday. On the news.

http://www.youtube.com/watch?v=jIgQ6v0h9nQ

June 16, 2007

Shira’s Second Birthday

http://www.youtube.com/watch?v=_KzN4LfhpIg

Shira’s 4th Birthday

http://www.youtube.com/watch?v=agrUaC9jq7E

MEDICAL PROCEDURES

Mickey Button Change Out

http://www.youtube.com/watch?v=vX-VZT-Px8g

Venting and Flushing Mickey Button

http://www.youtube.com/watch?v=f0FsjQElvvM

Taking Shira Off Bipap

http://www.youtube.com/watch?v=PQ8AFx2Ng_I

OCCUPATIONAL THERAPY

August 2007

Shira Sitting Up In Sling With Hensinger Neckbrace and Tumbleform Chair

http://www.youtube.com/watch?v=O_2027cG5No

June 2009

Shira Brushing Her Teeth

http://www.youtube.com/watch?v=H_1xxD8lDrU

Shira In Her Stander September 2009

Part 1

http://www.youtube.com/watch?v=upoNGx5fN3E

Part 2

http://www.youtube.com/watch?v=v1JeDopOQl8

Shira Swings On Her Jennyswing and The Shira Swing Built By CanAssist

http://www.youtube.com/watch?v=4qOzV_rGvlI

MAX EASY S STROLLER  This stroller isn’t being made anymore but it is fantastic.  For SMA Type 1 children its imperative to have a stroller that lays flat and can carry your gear.  I strongly advise you to call BL Myers at www.exomotion.com as she is the most experienced when it comes to seating for SMA Type 1 children.  Here is a video of Shira in her stroller.  Thanks BL!!!

http://www.youtube.com/watch?v=E6H6VJqE3NE

Shira at Cedar Hill golf course in her Max Easy S stroller

http://www.youtube.com/watch?v=z1ETv6qIPLU

PHYSIO THERAPY

Performing Chest Physio Therapy (CPT) on Shira

Part 1

http://www.youtube.com/watch?v=zzc0pPeEicY

Part 2

http://www.youtube.com/watch?v=l4Fs5naMUyw

PERFORMING BECKMAN MOTOR ORAL THERAPY ON SHIRA

It’s the opinion of many of us SMA parents that there is not enough intervention regarding speech language pathology with SMA children.  The domain of the body is the physio therapists domain while the face is the domain of the SLP.  Heaven forbid that a physio therapist touch a patients face.  If it wasn’t for an SMA parent posting her video on motor oral therapy I would not have heard of it because our SLP at that time was not forthcoming with any out of the box thinking.  I first learned how to perform Beckman Motor Oral Therapy from a video and then got a new SLP who guided and corrected my technique.  This therapy has improved Shira’s range of motion in her face drastically.  I recommend this therapy highly and suggest you start it from the time your child is a baby to keep range of motion and help prevent jaw contractures.  This therapy also helps develop the THE_VESTIBULAR_SYSTEM.  Handout of how to perform Beckman Motor Oral Therapy with diagrams Beckman Motor Oral Therapy Handout

Beckman Motor Oral Therapy Part 1