I went with the boys and their Mom and Dad to the Stan Cassidy Center for Rehabilitation. These were two extra days, added on to their annual yearly assessment, that the staff felt they needed to formulate working goals for the boys.
It's always a busy time for the boys and their parents with a lot of information to squeeze in to a short period of time. As a grandmother, I was glad I was there, to stay with the boys, so Mom and Dad could speak in private to the specialists at the center.
Some concrete goals were set for Aiden and some great suggestions were put forth for Brian. Now, to initiate these goals and work to complete them. I'm so glad they have the Summer vacation coming up soon, to work toward those goals.
We stayed at the mini apartments provided by the center for just these circumstances. Very nice accommodations and lots of extras.
Here are a few photos of our trip.
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| The boys posing at the doorway of their bedroom, of the mini apartment, at the center where we stayed. |
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| Our large picture window, looking out on the outdoor rehabilitation garden. |
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| Another angle of the 'apartment'. |
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| All of us together. |
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| With the boys heading out for a walk, around a very large, Fredericton block. |
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| Aiden & Brian |
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| Posing beside an antique snow plowing machine, (probably pulled by horses). |
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| By one of the beautiful birch trees we passed by on our walk. |
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Great pics. We are so fortunate to have places like Stan Cassidy Center in this province. Thank you for taking the time to let us know the progress the boys are making. They are growing up so quickly and becoming even more handsome!
ReplyDeleteThanks, Pat! Yes we are very fortunate to have such a great facility so near us.
DeleteThanks for the update Kathy, I was wondering how the boys were doing. I said it before and I'll say it again, some people complain bitterly about our health care system but we are so lucky to have facilities such as the Stan Cassidy Centre available to anyone who needs it!
ReplyDeleteLove all the pictures, they are growing up quickly!
It was so nice to stumble upon this blog. My family is also affected by DM1. My grandmother, father, younger brother, myself, and my son all have this condition. We only learned that I had this condition when I was 6 weeks along with my son. During our second ultrasound we were able to see many of the signs of the congenital form - excess amniotic fluid, position of the feet, etc. A few days after birth we got his repeat count of 1020. Our son was also born 8 weeks early and spent 2 months in the NICU before he was able to come home. He had to be intubated, and he was also fed via a NG tube. He has done well since coming home, but he too is late in meeting the developmental milestones. He is now 9 months/7 months adjusted and just beginning to hold his head up, though he still cannot sit independently. He is an aspirator, so he takes thickened feeds to prevent pneumonia. Our family has so many questions about his future, and there is so little information about the congenital form. It is nice to find something out there on the web about what other families are experiencing and how they are coping with the diagnosis. We are fortunate to be living in Rochester, NY where the research for a treatment for DM1 is taking place. Our son's neurologist is one of the doctors on the research team and we are able to get the most recent updates when we see her every three months. She is confident that they have a treatment that will be ready for clinical trials in the next couple of years. This link talks about the research going on now - http://www.urmc.rochester.edu/news/story/index.cfm?id=3572. Please keep the updates coming! My prayers and thoughts are with your family as you go through this journey as well.
ReplyDeleteHello and welcome to this blog. The boys are looking forward t the news school year. They each have E. A.'s of course. Please check out my facebook site of this as well.
Deletehttps://www.facebook.com/MyotonicMuscularDystrophyOurFamilysJourney
There may be some new information you haven't come across as yet.
Best wishes on your own journey.