Aiden helping out!

Even though a child is disabled, they can still help out to their ability. This is Aiden helping to clean the tops of his Grampy David's tube feeding cans. He called it "making bubbles".

Aiden helping out.

Stan Cassidy Center for Rehabilitation

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.

The boys posing at the doorway of their bedroom, of the mini apartment, at the center where we stayed.

Our large picture window, looking out on the outdoor rehabilitation garden.

Another angle of the 'apartment'.

All of us together.

With the boys heading out for a walk, around a very large, Fredericton block.

Aiden & Brian

Posing beside an antique snow plowing machine, (probably pulled by horses).

By one of the beautiful birch trees we passed by on our walk.

For more information on Myotonic Dystrophy, please 
follow this:link

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.

Continued Assessments for Stan Cassidy Rehabilitation Center

Myotonic Dystrophy - Our Family's Journey

Together We're Stronger

The one day the boys were seen at the Stan Cassidy Center, in March was not enough time to complete the assessments the team needed to help the boys go forward with this condition to achieve a positive outcome.

So, over the next few weeks, in preparation for a couple of intense days at the Stan Cassidy Rehabilitation Center, the boys will be seen by a number of medical professionals in preparation for this visit.

So this will mean time missed from school along with coording these appointments so  they're is no over lap in times and they all get completed, in time, for the team to be able to view  the results before the visit next month.
We look forward to several busy weeks.

For more information on Myotonic Dystrophy please follow this link:

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.

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.

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.

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.

Update - January 26, 2013

Together, we're stronger!

I guess I spoke a little too soon with my previous blog update. Brian, the eldest boy, is now in the hospital. The blood results have revealed that he has the flu, which has led to excess fluid in his lungs. 

He hadn't been feeling well for a few days, which happened to have occured over the weekend when family phycians can't be reached. Then, on Monday he was kept home from school again, in the hopes that one more day would lead to his feeling well enough, to be able to go  back to school. He was then seen by his family physician, who felt it was the flu or the beginning of pneumonia and he was given an anti-biotic. He walked in and out of the doctor's office on his own accord and seemed to be in the actual 'getting better' side of things.

He was checked by his parents at midnight and appeared to be sleeping well. Then, in the morning he awoke with severe shortness of breath, rapid and small respirations, unable to carry his own weight and poor capillairy return in his fingertips.  He was taken directly to the hospital where he was admitted, given the proper treatment and admitted to the intensive care unit there. 

Having Myotonic Dystrophy, he doesn't have the muscle tone to cough hard enough to dislodge the mucous from his lungs.

He is now in an isolation room on the main children's floor and being watched very carefully. Our main concern now is his inability to maintain a proper oxygen saturation, while breathing only room air and his complete lack of appetite. So, he's still on a small amount of oxygen and has intravenious fluids going, along with  two IV antibiotics. He gets aerosols and regular percussion to his back to help loosen some of the mucous in his lungs. 

Brian's Mom had been staying with him, but she isn't feeling well herself and their youngest boy, Aiden, has been coughing more over the past couple of days. She's felt it best to stay home with him. Dad is  now at the hospital with Brian.

They don't have an operating vehicle right now, so Grammie had been doing a lot of driving back and forth, from their home and to the hospital.  I'll be taking a turn at the hospital, early next week to give both parents a break.

We're thankful that so far, it's just been the one child afflicted with this nasty flu. We're very confident that he will have a full recovery and gain back his lost weight. Teenage boys have a tendancy to do that.

We're still remaining positive and are appreciative of the kind thoughts and prayers sent by many family and friends.

If you'd like to find out more information on this flu, please click here.  If you'd like more information on Myotonic Dystrophy, please select the name highlighted.

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.

Everyday life with Myotonic Dystrophy - Jan 20, 2013

Together we are Stronger

Starting at the Top

David, the grandfather of the boys has been down with a common cold. You or I would shake it in a few days, but for him it takes longer. For one, he's unable to give a good cough due to decreased muscle tone. Then, even with cold medications, one has to be careful that the medications are not too strong. They seem to effect people with Myotonic Dystrophy harder. So striking a balance between keeping him comfortable and the symptoms at bay without causing harm can be difficult.

So in Winter the things he'd usually be doing, like snowblowing our driveway after a storm, just don't happen. Thank the Lord I'm healthy enough to be able to shovel, some. But in those times, we need to rely on a neighbour to plow us out.

It also means that I don't venture out much, because I don't like to leave him when he's not well. But this too shall pass and our grandparenting lives will be back on track soon.


Christin, the Mom of the boys, had her work cut out for her over the Christmas break, because neither of the boys likes to go out in the snow and cold, more specifically it's the wind that upsets them and seems to take their breath away. So, for the most part, she was housebound along with them. There were times she managed to get out when her husband could stay with them.

Now the boys are both back in school and Christin can get out more, but only between the hours the boys leave in the morning for school and the first one returns home around 2:00PM. She's happy to be able to get out when ever she can and always very grateful for some adult company, besides her husband, of course.

Brian, the eldest of the boys is 16 and in High School, in a modified program. He's finding it a little easier, this his second year in the same grade, but being a teenager, he typically doesn't like to study. This, combined with the fatigue and cognitive delays, it's still a rough go for him and his parents. His Dad is super in helping him with his studies, so that has been a blessing for them.

Aiden, the youngest boy is loving school as long as things don't change. He fixates on things, until a new  interest comes along. Since Christmas it's been a new digital camera. Rather than discourage him from this, his parents let him indulge in one of the few things he 'can' control. It's as simple as keeping the rechargable batteries charged and downloading the photos he takes when the batteries run out, which is usually every day. His Dad does a quick 'look through' the downloaded photos and usually deletes most of the pictures, keeping very few from each group.
As long as the photography doesn't interfere with his regular routine; meals baths, after school work, etc, Aiden's allowed to continue.

That pretty much covers how our family is dealing with Myotonic Dystrophy to date. Please feel free to comment or to tell us your own story.

If you'd like to ready more about this condition, please go to Myotonic Dystrophy.  

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.