Saturday, February 23, 2013

Update - February 22, 2103

Together We Are Stronger
Our family has been living with Myotonic Dystrophy since our diagnosis in early 2004. the following is the most recent update.

Brian is now home from the hospital, eating well, back to school and gaining his strength back. We are very happy about that. He was well taken care of at the hospital by the staff and his Mom & Dad, who stayed with him in shifts during his entire time there.
The rest of our families took turns taking care of Aiden at home, so they could be there.

Aiden had an appointment with the specialist for his scoliosis. For this we had to travel to another city hospital. 

They feel  the degree of his curvature has not progressed any further from the last X-Ray a year ago. So, there was not talk of surgery at this point, which is wonderful news, for now. They talked about the possibility of a brace.The doctor felt that it may or may not help Aiden, due to the location of his curvature being so low on his spine.  It was decided for forego  the brace for now, as well. So it will be just a case of watching him carefully and revisiting the situation next year.

He did very well at his visit and  didn't complain about the procedure at all. He was rather proud to see himself in the X-Ray slides.

If you'd like more information on Myotonic Dystrophy, please click the link.


The material provided on this site is designed for information and educational purposes only. The materials are not intended to be a self diagnostic and/or self treatment tool. I encourage you to use this information as a tool for discussing your condition with your health practitioner.


  1. I look forward to the unique updates that you post on this site. As always, sharing such details not only helps those who, like me, need to learn more about this disease process, but also for those who are experiencing it.

    1. Thank you for your kind words of encouragement. We all have things to deal with in our families every day some days more than others some days less. We can all use and give encouragement when needed.