Greetings!
If you’ve visited before, “Welcome Back!”
If this is your first time here, let me introduce you to Ellie. She was born prematurely in March ‘05 and spent the first 4 weeks of life in a Neonatal ICU before going home amid high hopes that her troubles were over.
Unfortunately, by 9 months, it was obvious her motor skills were delayed. Ellie was diagnosed as having periventricular leukomalacia (PVL), caused by a stroke in utero or shortly after birth. This damaged the white matter of her brain, affecting muscle control.
As a result, Ellie has Cerebral Palsy and needs lots of special care. She has all kinds of therapies at many different places, but it turns out her best hope for walking is to have Selective Dorsal Rhizotomy (SDR) surgery.
If all goes well, she’ll have that surgery at the B.C. Children’s Hospital in Vancouver. The doctor there studied under Dr. Park from St. Louis Children’s Hospital, known as the best SDR surgeon in the world.
After the surgery, Ellie will need 4 months of intensive daily therapy, and the best place for her to get the right kind is at a center in Orlando, Florida.
Obvously, this is a major deal! Stay tuned to hear more about Ellie and her experiences dealing with Cerebral Palsy and treatments to help restore as much body function as possible!
{ 2 comments… read them below or add one }
Dear family,
Whe are verry interested in the progresses that Ellie make.
Maybe our son is getting the same surgery.
Whe live in the Netherlands and we look every day how Ellie is doing.
Lots off luck too you all.
Marike and René
Hi there Marike and Rene!
Thanks for stopping by. Ellie is doing really great right now, and we’re hoping this is going to be a HUGE help to her.
As the process goes along, we hope to have some informative articles on different aspects of the surgery, like Ellie’s mom mentioned doing one on what would have been good to know before going to the hospital.
We hope to put stuff on here that will help people with kids having SDR surgery on a more personal, practical level.