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Julie's Website

Julie's Wheels

New! PT 2011
August 2008 Bethlem Myopathy/Ullrich CMD conference notes
October 2005 Bethlem Myopathy/Ullrich MD conference notes
Update 2006
Update 2005
Update 2004
Julie's Hypotonia Story
The Medical Puzzle
The Muscle Biopsy
The Diagnosis
Physical Therapy--updated in 2008!
Seating at school
Julie's Wheels
The Sleep Studies
Julie's flexible Daddy
Bethlem Myopathy--DNA and Muscles
Julie's Bethlem Myopathy Book

When there is a lot of walking to do, Julie loved to use her adaptive stroller and recently decided she would prefer a wheelchair so she can wheel herself.  She named her regular Graco stroller "Strollie" when she was two and we have been calling her stroller "Strollie" ever since!  At age four, Julie's legs were dragging on the ground in the Graco so with the help of the PT at the neuro we got a Convaid Metro through insurance.  What a difference!  The center of gravity is higher, making it much easier to push.  We used the Metro for three years until Julie became so tall that she had to slump to have her head supported.

Julie at Disney World in Strollie where it was a lifesaver!

Days before Julie turned seven, her new adaptive stroller finally arrived.  We requested it in January at the neuro and it arrived at the end of June!  It is a Convaid Scout and we love it.  Julie named it "Rachel" thanks to her friend Max who names her strollers and other equipment.  Rachel is purple, has all-terrain wheels, a headrest extension for when Julie gets taller, and a sunshade that detaches.  Julie is riding in style!

Julie in Rachel holding her doll Christine

Rachel from the side with the sunshade.

Julie's friend Max was kind enough to send us her adaptive jogging stroller that she can no longer use for Julie to use at camp this summer.  Max named the jogger Daisy and Julie has gladly kept the name!  Daisy was very helpful at day camp which is on a private school campus.  She saved Julie's energy on long walks to activities so she could enjoy herself more at camp!

Julie's wheelchair
The summer Julie turned 9, she began to really want to propel herself in a wheelchair, rather than rely on someone else to push her in a stroller.  We ordered a wheelchair in September of 2007 and finally got it in February, 2008.  Julie named her "Guinevere" after King Arthur's love in...Spamalot!  She is a Quickie 2 and fabulous.  Really comfortable for Julie and easy for her to self-propel.  She fits easily in the car by taking out the seat and folding her up!

Julie in newly arrived Guinevere