Tuesday, November 24, 2009

Beckman Oral Motor Therapy-Sometimes It All Comes Together

A few months ago I discovered a new oral therapy while reading through posts on http://www.smaspace.com The therapy is called Beckman Oral Therapy http://www.beckmanoralmotor.com/. Because SMA Type 1 patients get jaw contractures and have very limited range of motion in their jaws I have always been concerned about what the future holds for Shira's ability to keep speaking. I knew I had to take some kind of action before it was too late and this video appeared http://smaspace.ning.com/video/romansspeech-therapy-oral Today the head speech pathologist came over to improve the techniques I had learned by watching the video. I will post a video soon as well as the instructions I received from Phil Harmuth on Beckman Oral Therapy. I can't say enough about Shira's progress from our daily Beckman routine. Shira's jaw has more movement than ever before and she can actually seperate her upper and lower jaws. If you aren't already performing oral therapy on your child I strongly suggest doing some form of oral therapy to help prevent contractures and keep some range of motion in the jaw. This therapy also has relieved a lot of pressure in Shira's face. Sometimes everything just comes together and this is one of those days. Thanks Phil Harmuth and the Queen Alexandra Centre!

Wednesday, November 18, 2009

2 Great Books By Christopher Reeve--Advocacy

"So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable. If we can conquer outer space, we should be able to conquer inner space too--the frontier of the brain, the central nervous system, and all the afflictions of the body that destroy so many lives and rob our country of so much potential."

While Christopher Reeve did not suffer from a degenerative disease his catastrophic accident which left him a quadriplegic and vent dependent changed his life forever. Christopher Reeve's insight into living with paralyzes and how it effects your life is profound. Christopher wrote 2 books and I strongly suggest everyone read them as they give great information on family dynamics, hope, and the books are heavily weighted on advocacy. Without Chistopher Reeve stem cell research wouldn't be where it is today as he really increased funding for stem cell research as well as political will to a whole new level while he was alive creating the environment or stepping stone for scientists today.

Christopher Reeve "Still Me": This book deals with Christopher before and after his accident. This is his first book and obviously an inspirational story of his entire life. You get an eyeful of his child hood through adult hood, his injury, emotional and physical trauma and how he rebounded into one of the most effective advocates for the disabled in the United States ever!!

Christopher Reeve "Nothing Is Impossible": This is a must read for us advocates!!! The book is not deep but it goes into Christopher's thought process's one goes through after a catastrophic diagnosis or injury:
1) The First Decision
2) Humor
3) Mind/Body
4) Parenting
5) Religion
6) Advocacy
7) Faith
8) Hope
Christopher Reeve was an avid sailor and the lighthouse does not have religious meaning here. Here is an excerpt from his book:

"When the unthinkable happens the lighthouse is hope. ONce we find it, we must cling to it with absolute determination, much as our crew did when we saw the light of Gibb's Hill that October afternoon. Hope must be as real, and built on the same solid foundation, as a lighthouse; in that way it is different from optimism or wishful thinking. When we have hope, we discover powers within ourselves we may have never known---- the power to make sacrifices, to endure, to heal, everything is possible. We are all on this sea together. But the lighthouse is always there, ready to show us the way home."

Monday, November 16, 2009

4 year-old Shira Fisher is terminally ill in the news


VICTORIA - 4 year-old Shira Fisher is terminally ill with Spinal Muscular Atrophy or SMA. Her parents were told she had months to live, when Shira was first diagnosed four years ago. But the young girl continues to defy the odds.

Her parents, Brad and Maxine, have become advocates for Shira and other SMA kids. Last week, they were told their application to get Shira a vaccine to fight out RSV (a virus that attacks the respiratory sytem) was denied. Shira has twice beeen hospitalized with RSV and both times nearly died.

Her parents believe the vaccine can keep Shira out of the intensive care unit this winter. The Fishers contacted A News and within 48 hours, BC Children's Hospital announced its vaccine protocol for the province would include children with SMA who are under 15 kilograms. Shira now qualifies and was given her first set of anti-RSV shots today.

The Fishers believe Shira's original rejection was over money - the vaccine costs about $8,000 and they worry about other families with special needs children won't fight the system to ensure quality care.