Aiden and Brian's Annual trip to the Stan Cassidy Center for Rehabilitation

The boys made their annual trip to the Stan Cassidy Center for Rehabilitation, in Frederiction this week. For anyone not familiar with this Center  here is a link to their site. SCCR

They have an expert team of specialists in many disciplines including Physiotherapy, Occupational Therapy, Speech Therapy, Respiratory Therapy, Recreational Therapy, Dietian, Social Work, the Fundy Chaper of Muscular Dystrophy Director, all coordinated by a Paediatric Medical Director who has become very familiar with the family over the years they have been seeing them. 

We are very fortunate to have these services available for us, here in Canada, at no cost to the boys and their family.

Several areas of concern and needs were addressed by the parents and team. Then, plans were formulated to work towards achieving these goals. It was a very busy, information packed, but productive day for the boys, their Mom, Dad and me (Grammie).

The boys took a few minutes break in the center's gymnasium, which is fully equipped for assessment  and play for all various levels of ability.

Aiden showing off his ball throwing skills.

Aiden playing with a downward spiralling car track, as Brian watches on.

Brian showing off his free weight skills.

       

Aiden, not to be outdone, showing off his skills, with the free weights

                                             

                                     

After getting bored with all the "technical talk', Aiden borrowed Grammie's camera to do a little photographing on his own.

 Aiden's capture  of his Dad and brother,as one of the staff is speaking with the rest of the family.

Big brother, Brian, Mom and Grammie, captured by Aiden.



For more information on Myotonic Dystrophy, please select the this link  Myotonic Muscular Dystrophy

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.

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.

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.

Global Giveaway Hop

Welcome to the Global Giveaway Hop!   
This is a giveaway hop in which you can win some fantastic prizes. It's hosted by Simply Stacey. 

 After you are done entering my giveaway you'll want to check out everyone else's.

Don't forget to follow our host -

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My prize, is a duo of these beautiful Seagull Pewter Christmas ornaments, specially crafted, each year, to support Muscular Dystrophy Canada.
Congratulations to Michael Dale Grim on winning these two beautifully crafted keepsake ornaments!!

BUY IT -

To find out more about Muscular Dystrophy or purchase one or more of  these beautiful hand crafted Seagull Pewter ornaments, please visit here at  Muscular Dystrophy Canada

WIN IT - 
Using the Rafflecopter form below, simply follow the instructions, complete the mandatory entry,  plus any or all of the optional entries for your chance to win this amazing prize!  Good luck!

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Beginning with Knowledge - Part 7

Together We're Stronger

Our family has been affected by Myotonic Dystrophy, for many years. I've been wanting to blog about it for some time now, but didn't know how to begin. 

There is way too much information to cover in one post. So, to make it easier for me...and easier for everyone reading to understand, I have decided to break it up into a series of weekly posts.

As we travel this journey of learning together, I would like to think of this blog as a place where, if any others are affected, they too can offer comments and voice their concerns and suggestions on families dealing with this condition.

All comments and thoughts are my own. Resource information will be linked to it's source.

Our Story - continued:

Finally we had a name for the problems the two smaller boys, Christin, and her father had been experiencing. It was called Myotonic Dystrophy. We were told this was one of a  vast number of neuromuscular disorders, under the larger name Muscular Dystrophy.

It was such a scary thought, that this disorder, would be associated with our family. Before we did the research, horrible thoughts ran through our minds. Searches on the World Wide Web, turned up even more, shocking stories. 

It was at this point that help began to come to our daughter and her family. And with the direction of professionals, we were able to sort out the important facts. 

What about research?

Researchers are trying to determine how the expansion of the repeated section of DNA in genes on chromosome 19 or chromosome 3 destabilizes muscle cell function. Other scientists are studying the actual process of muscle degeneration in myotonic dystrophy and also, the effect of myotonic dystrophy on other parts of the body.

For more information on this subject, please refer to: Muscular Dystrophy Canada

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.

Beginning with Knowledge - Part 6

Together We're Stronger

Our family has been affected by Myotonic Dystrophy, for many years. I've been wanting to blog about it for some time now, but didn't know how to begin. 

There is way too much information to cover in one post. So, to make it easier for me...and easier for everyone reading to understand, I have decided to break it up into a series of weekly posts.

As we travel this journey of learning together, I would like to think of this blog as a place where, if any others are affected, they too can offer comments and voice their concerns and suggestions on families dealing with this condition.

All comments and thoughts are my own. Resource information will be linked to it's source.

Our Story continued:

Before Aiden was born, we had many unanswered, family health, questions. Why was Brian not meeting the 'normal' milestones of holding his head up, sitting up, standing, walking and talking?

Christin, Brian's Mom, had trouble opening jars and had stiffness in her hands. She thought she had arthritis, at the young age of 24. 

David, her father had cataracts at 39, a heart attack at 48, premature balding, difficulties swallowing some foods, gastroenteric problems and severe apnea. 

Each one of these things, of course, were investigated and treated by the proper 'specialist' in each area.  But not until Aiden was born did it all begin to come together and begin to make sense to us.

 What are the symptoms of Myotonic Dystrophy?

Cataracts may develop frequently in people with myotonic dystrophy. They develop fairly slowly, but can occur in people as young as 30 years.

Myotonic dystrophy may affect the heart muscle. A person my experience palpitations (rapid, bounding pulse) or dizzy spells, or thy may have no symptoms whatsoever.

A person who has myotonic dystrophy may have difficulty swallowing. This is due to involvement of smooth (or involuntary) muscle. Cold foods may cause some individuals to choke.

Other potential problems may include bowel problems (constipation and stomach pain) and uterine problems in females. Affected individuals may be susceptible to respiratory problems such as infections and shortness of breath.

Premature balding may occur in some males, while females my experience thinning of hair. In addition to the symptoms of the adult form, symptoms of the congenital form of myotonic dystrophy include: difficulty breathing, sucking and/or feeding, weakness in virtually all muscles and slowness and difficulty in developing language and, motor skills.

This information comes from: Muscular Dystrophy Canada 

  

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.

 

Beginning with Knowledge - Part 5

Together We're Stronger Our family has been affected by Myotonic Dystrophy, for many years. I've been wanting to blog about it for some time now, but didn't know how to begin.  There is way too much information to cover in one post. So, to make it easier for me...and easier for everyone reading to understand, I have decided to break it up into a series of weekly posts. As we travel this journey of learning together, I would like to think of this blog as a place where, if any others are affected, they too can offer comments and voice their concerns and suggestions on families dealing with this condition. All comments and thoughts are my own. Resource information will be linked to it's source. Our story-continued: After receiving a diagnosis of not one, but four, family members who had this condition, we knew we'd have a long journey ahead of us. The geneticist suggested DNA testing of my husband's siblings, as well as the children of his father's siblings. So far only one brother has been known to be affected and not to the extent of any in our family. For that we're thankful! DNA testing along with a family history and physical examination was all that was needed to make a diagnosis in our case. But without Aiden's birth in 2004, none of this would have come about. It was because of him that this condition was diagnosed in our family and our journey began. How is myotonic dystrophy diagnosed? A physician makes a diagnosis based on family history and a physical examination. Tests that will assist the physician in making his diagnosis include DNA analysis, an electromyelogram (to measure electrical activity in the muscle), a muscle biobsy (to study muscle cells for signs of the disease) and in the case of possible cataracts, and eye examination. Is there any cure or treatment for myotonic dystrophy? There is no cure for myotonic dystrophy at the present time. Treatment is symptomatic. That is, problems associated with myotonic dystrophy are treated individually. For example, surgery is available for the correction of cataracts. Medication may be prescribed to counter the effects of myotonia. A heart specialist, depending on what symptoms are experienced, will treat heart problems. Speech therapy and a modified school environment can assist children with developmental delays. Remaining as active as possible is recommended for everyone with myotonic dystrophy. For more information on 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.

Beginning with Knowledge - Part 2

Together We're Stronger


Our story-continued:
When our second grandson was born, he had some problems early on. For privacy purposes I'll call him 'Brian'. He spent a few extra days in PICU (Pediatric Intensive Care Unit) because he had difficulty breathing on his own and had to be monitored. This resolved itself quickly. Brian was also, what they referred to as a 'floppy' baby, meaning he didn't have the usual drawn up arms and legs of a newborn.
He had difficulty latching on for breast feedings, so had to be changed over to a bottle. He was late achieving the usual milestones of holding his head up, sitting up, walking and talking.
Even with all this, there was no official diagnosis. He had Physiotherapists, Speech Therapists and Occupational Therapist and Early Childhood Educators, working to improve his 'symptoms'.
 With no diagnosis or prognosis it was frustrating, but we were happy to have the assistance of these professionals, to help him and his family out, however they could.

To learn  more about this disorder, please go to:Muscular Dystrophy Canada

 Who can be affected by Myotonic Dystrophy?

Anyone can be affected my myotonic dystrophy. It is a genetic disorder passed on to children of either sex by one parent who has the disorder.

Myotonic dystrophy can affect people at any age. The majority of people are diagnosed by the time they reach their early twenties. With each successive generation, the symptoms of myotonic dystrophy seem to get more severe, and the age that they appear gets younger. This phenomenon is known as anticipation.

Common symptoms in the adult form include:

- Myotonia that results in a delay in the ability to relax the muscles after a prolonged contraction,

- muscle weakness of the voluntary muscles, starting gradually and progressing slowly,

- muscle stiffness,

- drooping eyelids,

- unclear pronunciation of words,

- difficulty raising the head when lying,

- difficulty holding and object firmly or lifting it,

- a shuffling gait when walking,

- difficulty climbing stairs or getting up from a seated position,

- a long, rather expressionless face.

People with myotonic dystrophy may also have symptoms affecting other parts of the body

  

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.

Beginning with Knowledge - Part 1

Together, we're stronger!

Our family has been affected by Myotonic Dystrophy, for many years. I've been wanting to blog about it for some time now, but didn't know how to begin. 


There is way too much information to cover in one post. So, to make it easier for me...and easier for everyone reading to understand, I have decided to break it up into a series of weekly posts.


As we travel this journey of learning together, I would like to think of this blog as a place where, if any others are affected, they too can offer comments and voice their concerns and suggestions on families dealing with this condition.


All comments and thoughts are my own. Resource information will be  linked to it's source.


To start I'll include a definition of Myotonic Dystrophy from the Let's Make Muscles Move site, here in Canada.


To learn  more about this disorder please go to: Muscular Dystrophy Canada



Myotonic Dystrophy, also known as Steinert's disease, is the most 
common form of muscle disease, affecting approximately one person in 
8,000 worldwide. It is a disorder characterized by progressive muscle 
weakness and wasting and by myotonia (difficulty in relaxing the muscles 
after they have been contracted). It is  a multi-system disease, typically 
involving a wide range of other tissues as well as muscle.

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.