If You Or Someone You know Has Blount's Disease, I Really Want To Hear From You! Please Email Me!

Now, there is a place to go... Now, we are no longer alone...


Tuesday, September 11, 2012

Update: Shea's Story, Continued...

Everyone remembers Shea. Her sweet little baby face; and her warrior Momma Zoe... I am so thankful to have maintained contact with them throughout this past year; as they traveled on their journey through Blounts Disease.

Zoe is a member of the Ben Has Blounts Network on Facebook; and has kept us all updated on Shea's progress. The following, is what she wrote to share with all of you...

"After Shea's Diagnosis of Blount's in April of 2011, I have seen doctors in NYC and Denver; and then I went to a clinic for Shriner's Hospital in Denver, and Shea was accepted as a patient. After being seen by doctors there, I felt that Shriner's was the place that I felt most comfortable and confident that Shea would get the best treatment.

All the other doctors that saw Shea wanted to do surgery as the first option of treatment because they did not believe that bracing can be successful. As a parent, I did not want surgery to be the first option for treatment, since there is a window of opportunity for bracing I wanted that to be tried before surgery. With that being said the doctors at Shriner's wanted to keep a close eye on Shea.

Over the past year or so we have done x-ray's every six months. There is a period of development that happens from approximately age 12 months to 2 1/2 years, that a spontaneous correction can happen. When the doctors did not see that happening, bracing was suggested in July of 2012.

 Shea started wearing her KAFO braces in August of 2012 and has been such a “ROCK STAR” having to relearn to walk, run, and all the things that she was able to do before her braces. Now September, Shea is wearing her braces 23 hrs a day and walking, running, and climbing. Shea wears them at night for sleep in the locked position and free motion during the day. We have had her braces adjusted 2x and they are saying that they already see improvement in her legs."

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