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's Upcoming Trip to the Hospital

This coming week will be a little concerning for Aiden, his Mom, Dad and myself. Aiden is going to be getting several of his baby teeth removed. In order to do that he will require an anaesthetic. His front teeth fell out as they were supposed to do. His back teeth didn't fall out, but the second teeth are coming in, therefore crowding in his mouth.

Aiden has a fear of anything new. He especially  has a fear of lying down flat, except to go to his own bed for sleep.This made even the simplest of dental exams very difficult. So he shall be going to the hospital, this week and will be given something to make him sleepy, before going for the surgery to remove his baby teeth.

I have no doubt he shall be sore for a couple of days. Even that too, presents a problem with him taking in nutrition, post surgery. He has an aversion to any foods that are soft and mushy, like pudding, ice-cream, yogurt, jello and the like. All the things the 'professionals' recommend after this type of surgery. We shall try to get his nutrients into him via popsicles made with fruit and nutritional supplements.

We have no doubt his shall recover nicely. Our main concern is the anaesthetic.  His parents have spoken to an Anaesthetist who feels this procedure will go smoothly.
So we are confident  that things shall go well and his recovery will  be uneventful.

Please keep him in your thoughts and prayers.

A quick update:

Aiden is home after having 11 baby teeth and 1 abscessed second tooth removed. After some medication, for the evening for his sore mouth, Aiden settled well and and slept all night, without waking in pain. Tough little guy he is!

This morning he had a soft scrambled egg, milk, juice and water.  His Mom is hoping to get him back to school soon as soon as he can eat regular food again.

Thanks you for the prayers and well wishes. They have obviously helped. 

By the Way. He got 12 shiny Loonies from the Tooth Fairy!

Good Bye and God Bless You, Bob...We Will Always Love You!!

I’ve been putting off how to even write this post.  At the beginning of my first post, I said I wanted to do my best, to put a positive spin on the Myotonic Muscular Dystrophy – Our Family’s Journey, blog.

So today I decided this would be the day to continue with the posts. I have sad news, yet I am feeling Blessed.  On March 1, 2014, my beloved husband (Bob), whom, I described as David, died, following a courageous battle with complications of Myotonic Muscular Dystrophy.

His epiglottis (the little muscle that keeps food from going into your lungs but down to your stomach) stopped working. He was required to have a feeding tube inserted in August of 2013.

Following that first one,  he was hospitalized two more times, for aspiration pneumonia. Then, this year, he developed pancreatitis. This was probably inherited from his Mother, who survived the surgery quite nicely. This would normally, for everyone else, be a routine stone and gallbladder removal.

He recovered from the initial stone removal in stint insertion, but because of the need to remain off food to resolve the inflammation, was too  weakened for even limited activity. Because of this, his strength waned. 

He was started once again, on the tube feedings and was even up to his maximum daily requirements. Then, one evening he vomited and aspirated. He stopped breathing and despite the hospital’s valiant effort to save him he did not survive the code blue.

I know this sounds very depressing, but please, don’t stop reading.

Once we, as his family, came to accept his death, we were able to reflect on the time we had with him. Bob was very much, a loving Husband,  a devoted Father, a fun loving Grandfather, a cherished Brother, a  loved Brother-in-law,  an Uncle, a Cousin and Friend to so  many. This was made clear to us, at his wake, funeral and memorial service.

During these days, we shared how we were Blessed to have him with us,  how smart, funny, kind and gentle he was to so many during his life with us. Although we will miss him forever, it will be those qualities of his, that will live on in his children, grandchildren and someday great grandchildren.

He fought a hard fight, to remain with us. But there is not one among us, who would wish him back in the condition he was in, at his time of death.

We will always remember the strong, happy, teasing and fun loving man he was. We will continue to do our best to honor his memory, by continuing to live as he would have wanted us to do. All of the qualities he possessed will remain with his family, for as long as we each live, until the end of time.

May he now reside in  grace and peaceful rest in the arms of Our Lord.

God Bless you Bob, We will love you and miss you forever.

Now, to find a new normal....

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.