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.

Community Christmas Party Dec. 15, 2012

The local community Christmas party was pretty busy. Young Aiden made himself a colorful bracelet and went on a scavenger hunt, for tree decorations, on a local nature trail with his Mom and cousin. When the noise of the 52 plus young children and their parents got to be a little much, for him, he took refuge in the kitchen and watched the festivities from there.
He did well and only had a little melt down when a youngster was brought into the kitchen crying. He was quickly consoled by his loving Mom. So, he watched the rest of the festivities from there in the kitchen, until it was time to leave. He was very proud of his bracelet he'd made, but didn't even want to peek at Santa though the doors of the kitchen, as he handed out gifts to all the children. He ended up going home with a treat from Santa anyway.

Making a colorful bracelet with a little of Mom's help.

Showing off the finished bracelet.

Scavenger hunting for tree decorations on the local nature trail with  Mom and a cousin.

Global Giveaway Hop

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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!!

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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

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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.