Thursday, March 14, 2013

The boys yearly medical team visit - March 13, 2013

Together We're Stronger

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


Each year the boys, along with their parents, travel to a city about an hour and a half drive away, to be seen and assessed by a whole team of medical professionals.  Each professional has their own field of expertise. They spend time with each of the boys as well as have discussions with the parents. Then, at the end of a very busy day, they co-ordinate all their observations, with the parents and a team leader, for a final wrap up session.


Aiden, waiting for one of the therapists to come to see him.
It is a very psychologically exhausting day for the whole family, with each boy seeing so many individual professionals.
Aiden playing in the waiting room while his Mom, Dad and older brother are at the wrap up session.
But, they are very fortunate that such a team exists and that they have access to this team. These yearly assessments are designed to co-ordinate a plan of care,  for each of the boys and to help the parents cope with their ongoing care, for the next year.

Both boys posing for a picture before heading out for the long drive, back home again.

For more information on  Myotonic  Dystrophy please  click  here.


Disclaimer

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.


5 comments:

  1. Great pictures of those handsome boys! They are so good natured and sweet to sit for "Grammies" photo call after a long day!

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    1. Thanks for your kind comment. They were very good. Brian is aware of the benefits of contributing to the yearly sessions, but for Aiden is was just a round of what must have seemed like school testing an being poked and prodded for most of the day. He was pretty anxious to get going home at the end.

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    1. Indeed they are, Norah. Nothing was done to hurt them, of course, but especially little Aiden frightens so easily. They need to get their assessments done, but he takes more time than a regular child, because he needs to be coaxed into doing so many things.

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