Showing posts with label Myotonic Muscular Dystrophy. Show all posts
Showing posts with label Myotonic Muscular Dystrophy. Show all posts

Sunday, January 4, 2015

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!

Saturday, March 29, 2014

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....