EazyHold

As a parent of a child with a severe disability, I know how much time and effort is invested in therapy. When Brennen was younger, we spent much of our time at physiotherapy, occupational therapy, and speech therapy sessions. As part of an Early Intervention Program, these sessions are vital to children with special needs. I was willing to do anything and everything to help my child progress, so like most parents, I supplemented my son's schedule with music therapy, art therapy, hydrotherapy, hippotherapy, and anything else I could find that had the word "therapy" attached to it.

Structured therapy sessions are important, sure, but I am also aware that as parents, our role in providing real life experiences and opportunities for participation in everyday activities and providing support in areas where they need it is perhaps the most critical part of their development.

Brennen has poor fine motor skills and very little (basically no) grasping ability. We have tried many different types of adaptive devices and specialized equipment to help him hold on to toys and other objects to give him a little bit more independence, but we hadn't found anything to be overly successful for us until I discovered the EazyHold. We know so many children and families who could benefit from this product, and I am excited to share it with you guys here today!

 

EazyHold is an innovative universal cuff that easily attaches to tools, toys and utensils to support the hand and fingers and help relieve the stress and fatigue associated with tool use. It is made with one piece of flexible, stretchable, soft-yet-strong FDA food grade silicone, and can be used by people with little or no grip strength.

The EazyHold was developed by three sisters who were discovering that many tasks around the house and garden were becoming a challenge because of the arthritis in their hands. All of the activities that needed a continuous grip that they did so effortlessly when they were young were now becoming difficult and painful. They wanted to continue to be active, and needed a solution.

"Frustrated one day while sweeping out the barn, Kerry had to resort to making a duct tape loop on the broom handle to finish the job without pain. Wondering if there was any kind of an easily attachable soft strap to help her get a grip on the handle of her broom and rake, her search proved fruitless... there wasn't anything! Enter Merrily and Wendy - her two very crafty sisters who brainstormed to come up with a solution to this problem. We knew there had to be a better way. We were familiar with the previous generation of grip assistive straps, as we'd done volunteer work in therapy centers before. The standard assistive devices are made of elastics, leather, plastics and hook and loop. They are scratchy, uncomfortable, bulky and unsanitary. We wanted to make something more comfortable, hygienic, adaptable, attractive and more affordable. So we decided to head in a new direction: a comfortable, colorful, silicone strap that could fit on virtually anything!
   
We explored different rubber materials, shapes and sizes. Made the molds and poured the first rubber prototypes ourselves in our kitchen. We put them on a variety of objects and headed to the Ventura flea market for a little customer feedback.
 
What we never could have imagined was the extent of the need beyond our own arthritis. The people passing by gave us suggestion after suggestion of what they would put an EazyHold on. Like the man who wanted to put one on his paint roller, and the nurse who needed one for her tiny patient's spoon and rattle. And later, in visiting with therapists, hospitals and convalescent homes, we learned that our simple, inexpensive EazyHold straps could become a valuable resource for those with Cerebral palsy, Stroke, Parkinson's, ALS, Spinal cord injuries, and many more individuals with special needs.

Imagine the joy we felt to see a baby who was unable to grip, now holding a rattle for the first time, marveling at it. The outpouring of thanks from parents who have children with disabilities has been unbelievable. Their gratitude makes our journey so exciting and meaningful. We never could have thought the need would be as great as it is and we are motivated every day to get our product out there to those who need it!"

*****

We have used the EazyHold on objects such as crayons, markers, drumsticks, shakers, a paintbrush, Brennen's spoon, his toothbrush, and some small toys.

Here is Brennen rocking out on the drum - holding on to the mallet all by himself and tapping away with no assistance!

He loves to feed himself, and can do so with the EazyHold and just a little bit of support at his elbow -

Our sweet friend, Ava uses the EazyHold for all kinds of things, like painting beautiful pictures independently -

..and using the shovels and rakes to explore our sensory bin!

Children with physical disabilities are children first. Like all children, they need opportunities to make choices and do things for themselves, within the limits of their ability. We have found so many uses for the EazyHold! It will be of great benefit to Brennen, and to many of the children in our child care program. Unlike other devices we have tried that can be bulky and uncomfortable, the EazyHold still allows the individual to feel the sensation of the utensil in their hand. They are perfect for use at home or at school, and will come in handy for lots of different activities. Doing things independently helps build self-confidence, and that can make a world of difference to a child with special needs.

EazyHold products are available through their online store at http://eazyhold.com/

Tulip Tales: Liam

At just 10 months old, Liam Wrice was diagnosed with a brain tumor at the Northern Lights Regional Health Care Facility in Fort McMurray. His parents, Jerry Wrice (of Carbonear, NL) and Natasha Hewlin (of Cow Head, NL), share their son's incredible story.

***** 

On December 28th, 2014 our little miracle arrived at our home. He couldn’t wait to come into this world! He wouldn’t even let us get to the hospital to deliver. It was then that we knew we had a determined little guy on our hands! Through the first 10 months of Liam’s life, we watched his progress, his development, and marveled at how smart of a baby he is - a baby with a smile that could melt your heart, a baby who brought us the true meaning of what life is really all about. 

Liam never experienced a day of sickness until the early days of November, 2015. It was on Thursday, November 5th that Natasha and I decided we should take Liam to a doctor. Early symptoms were virus-like - a small fever, a little vomiting, and sleeping lots. The first visit was to our family doctor in Fort McMurray. We thought it was a virus and needed to run its course. We were told to go home and give him some Tylenol for the fever. Two days later, on November 7th, we took Liam to the Emergency department at the Northern Lights Regional Health Care Centre. Again, we were told it was a virus and that it needed to run its course. 

The following day, Sunday November 8th, Liam had a couple of blisters break out in the temple area of his head and we took him back to the hospital once again. It was then that they ordered blood work and urinalysis, but nothing was found. They told us the blisters were likely his fever breaking and that it should clear up in the next couple of days. On the morning of Tuesday, November 10th, I was getting ready for work and noticed Liam lying awake in his crib. I knew that wasn't like him. Typically, if Liam is awake he wants to be up and playing, so I picked him up and put him in bed with Natasha. I went to work and wasn’t there 20 minutes before I received a call from Natasha saying that Liam’s lips and tongue were moving uncontrollably, and they were on the way to the hospital. Upon arriving at the hospital, I met Natasha there and they took us in immediately. The pediatrician took a quick look at him and ordered an MRI scan and a spinal tap. Prior to getting the MRI, they hooked him up to a heavy antiviral drug in case it was a virus that had spread to his brain. Once the MRI was done we understood that a spinal tap wouldn’t be required and that we would be going back to the emergency department to wait for the doctor to come and discuss the results with us. It was about 15 minutes later when the pediatrician came in to our room at the emergency department and delivered the shattering news that Liam had a mass on his brain and that a medical team was on route to airlift us to Stollery Hospital. At that moment, it honestly felt like someone dropped the world on our shoulders. Our whole life came crashing down.

Upon arrival to the hospital in Edmonton, surgeons were expecting to have to perform surgery right away based on the size of the tumor (9cm x 9cm x 9cm). When they had the opportunity to meet Liam, it was determined that surgery wasn’t an immediate requirement and that they would have a little more time to plan the surgery.

It was determined that Liam would undergo surgery to resect the tumor on Friday, November 13th. At approximately 9:45am, the nurse practitioner came to the waiting area where our family was anxiously waiting news on the progress. The first update was that the tumor was proving to be difficult and it was likely they would not be able to resect the entire mass during this surgery and that based on their findings under the microscope, it was going to be an uphill battle. Not another hour had passed when the neurosurgery team came to update us again. They were there to say that the entire tumor had been resected! What appeared at first to be challenging wasn’t so challenging after all! They came to an area that they thought would be difficult, however, there was a fine delineation between the brain and the tumor and thankfully they were able to lift it out without issue. 

Liam spent the next 5 days in the Pediatric Intensive Care Unit, where he was under 24 hour care. He proved to our whole family at that time just how strong he was. Just a short while after surgery he started to follow voices with his eyes. He ate a Popsicle just a couple of days after surgery, and started doing other silly things that Liam was known for.

After 5 days in the PICU, Liam was brought back to the post-surgery floor. This was time for recovery and time to understand the pathology of the type of tumor on his brain. Liam experienced some swelling during this time and there were a couple of anxious moments.

After a few days up on this floor, our family was advised that the pathology was back and it determined the type of tumor Liam has. We were called in to a meeting and were told that Liam has an AT/RT (Atypical Teratoid Rhabdoid Tumour). AT/RT is an aggressive, fast growing and very rare cancer which mainly occurs in children under the age of 3. The chances of getting it are 1 in 3,000,000. In the United States each year, approximately 30 children get diagnosed with this type of cancer. The prognosis is based on many factors such as age, location, metastases (spread), and ability to resect the tumor. The team at Stollery Hospital in Edmonton did tell us that they have had very little success with this type of cancer. However, in Liam’s case there are high hopes and great optimism. They were able to completely remove the tumor, and there was no spread to his spine and kidneys (which are the only other areas to which this type will spread). We were advised that over the next 9 to 12 months, Liam would receive an aggressive chemotherapy protocol.
 
Liam was placed on the oncology ward at the Stollery Hospital. After a couple of days there, it was determined that Liam would require a shunt to be placed in his head due to the swelling. This surgery went very well, and Liam recovered rather quickly.

A couple of days after the shunt surgery, Liam was discharged for a week so he could return to Fort McMurray and spend some time with his family before returning to Edmonton to begin his chemotherapy. Upon returning to Fort McMurray, he enjoyed a full week at home playing with his toys, living a 'normal' life, and celebrating his 1st birthday.

Liam returned to Edmonton on December 13th, to be readmitted to hospital. On January 11th, 2016 Liam and Mommy traveled to Calgary via medevac for Liam to have a stem cell harvest. Part of Liam’s chemotherapy protocol is to have high dose chemotherapy. This completely suppresses the bone marrow, therefore Liam needs his stem cells to go in after his chemotherapy and rescue him. This stem cell harvesting needs to be done in between his standard chemotherapy cycles, when his counts are the highest. On Wednesday, January 13th, Liam had his stem cell harvesting procedure done at the Calgary Children’s Hospital. The required number of stem cells he needs for his future therapy is 150 million. At first they advised us that there was potential to have to do this procedure a second time if they didn’t get enough stem cells, but just 4 hours into his procedure they had 165 million stem cells!
 
On Friday January 15th, Liam and Mommy came back to Edmonton. Liam had a couple of baseline tests performed - one for hearing, the other for kidney function. Both came back fine. Also on that day, Liam finally got 'evicted' from the isolation room, after being in isolation for over a month! They cleared him from all viruses, which meant that he could leave his room and go out for walks. On January 19th (just this week), Liam began round 2 of induction chemotherapy. 

To date, Liam has proven to be a champion, a true inspiration and a superhero. He is stronger than you could imagine, braver than anyone we know, determined as can be, and happy even on his worst days. He will win this fight, and it is the love, support, prayers and well wishes from all over that will help him get through it. Our family thanks everyone from the bottom of our hearts for the support shown to our son, Liam. 

If there is one message to be delivered to any parent out there, it is that you know your child better than anyone - better than any doctor or any nurse. If your child is acting different or is not feeling well, you know it. Be persistent with the medical team and ask questions. We were very fortunate that in just 3 visits to the Emergency department, they found the tumor on Liam’s brain. The average time to diagnosis is between 4-7 visits to an ER.

-Much love from Natasha and Jerry

*****

Jerry and Natasha, I can only imagine what you are going through. My thoughts and prayers are with you and your family, and especially to sweet Liam. He is strong. He is a fighter, and he will get through this thing. It must be such a scary time for you all right now, but I can only hope that your fear and worry is swallowed up by the day to day joy that your little boy brings. 

Liam’s journey can be followed on Facebook by searching - #LIAMSTRONG – Liam’s Journey to be AT/RT Free.

The family has also made available for purchase #LIAMSTRONG bracelets. These bracelets are dark grey in color, which symbolize brain cancer. These are being sold for 2 reasons - as a fundraiser, and to raise awareness of brain cancer, specifically in children and infants. Childhood brain cancer is the second most common type of cancer in children, after leukemia. It isn’t heard of often, it isn’t talked about enough, the study and research into childhood brain cancer is not where it needs to be. There needs to be a cure. Wear a #LIAMSTRONG bracelet proudly and share Liam’s story. Please feel free to direct people to the Facebook page so they can follow his journey. Awareness is key in finding a cure.

Liam's father, Jerry says, "We will some day, some way, some how, find a way to thank every single person who has been a part of Liam’s journey in one way or another. Natasha and I have made a commitment, and that commitment is – At the end of this journey, if there is 5 cents left over from the fundraising and support that has been given to us, we will pay it forward to someone who needs the same support we required."

#LIAMSTRONG

The Wondrous World of Brennen

"You can find magic wherever you look. Sit back and relax, all you need is a book." - Dr. Seuss

There is a special place in my heart for quality children's books, and one of our most favourite gifts this Christmas was a book that Andrew and I ordered for Brennen from Wondrous Ink.

Wondrous Ink makes the most beautifully illustrated personalized children’s books, where the letters in the child's name become part of the adventure. The company was started by Mike and Angelica Brittain, a husband and wife team with a real passion for bringing back the magic of books and engaging children through learning and reading.

The inspiring story-line uses each letter of the child's name to show them why they are so special and unique in the world. Along the way, they help a host of colourful characters in different ways, discovering something new about themselves with each interaction, until at the end they realize that those qualities actually spell out their very own name!

"One day a boy came home from school and said to his busy mother, "There are millions of people, we learned today, and each one different from the other. Out of all the boys in all of the world, not one is exactly like me. So what makes me different from everyone else?" the boy asked curiously."

You can also include a special message to your child, which is printed on the inside cover for no additional charge.

I have high standards when it comes to quality and durability in printed products, and Wonderous Ink really delivered. Each book is printed on high quality, thick paper and wrapped in bright fun packaging, perfect for gifting!

By integrating a young reader in any book, you are engaging them in a new way and igniting their imagination. Putting your child at the centre of the story creates a timeless keepsake packed full of magic! This is a book that our family will treasure for years to come.

We have a large collection of children's books downstairs for the little ones in our daycare - accessible shelves stocked with board books and hardcover picture books, sturdy enough to weather the wear and tear of their curious little fingers. This book, however, will have a special place in Brennen's room, it's words beautifully preserved on his nightstand, among the gifts and treasures and all of the other little things in his space that say "You are loved".

You can preview what your book will look like before you purchase. Try yours HERE!

To save 15% on your first Wonderous Ink order, use my referral link!

Creating a Positive Image of Disability

In late October, the Coalition of Persons with Disabilities - NL (COD-NL) launched a campaign called "Creating a Positive Image of Disability Through Marketing and Media". The organization received $50,000 from the provincial government to support the campaign, with the hopes of promoting inclusion in Newfoundland and Labrador.

Shortly after the launch, COD-NL partnered with The Overcast to build a bank of stock photos that aim to change the way we think about disabilities. They released a contest, calling on local photographers to submit photos of individuals with disabilities carrying out their everyday activities. See details of the contest HERE.

MusicNL’s “Male Artist of the Year”, Jerry Stamp plays through the joint pain and swelling of psoriatic arthritis. 

(Photo by Joel Upshall for The Overcast).

For local photographers, in addition to the media coverage and cash prizes ($3000 for first; $1500 for runner-up; $500 for 3rd place), this contest gave them a chance to showcase their style and get their name out there, among new audiences. There will also be an art gallery exhibition of the top photos in the coming weeks. This was an amazing opportunity for local photographers with an even more amazing end goal.

Laura George, a COD-NL board member and employee with the Independent Living Resource Centre, says that typically when we see people with disabilities in the media it is with sad or depressed overtones, like "'Look at that poor girl'. It’s always disability focused, I guess. Like, they might have a person in a wheelchair at a hospital or at an accident scene.” Laura says she would like to see a change in how people with disabilities are portrayed in the media. She would like to see images that show men and women with disabilities in strong leadership roles, or in everyday common settings, instead of being focused on their disability.

The idea for the stock photo contest was based on the vision of Changing the Face of Beauty - a nonprofit organization that is committed to equal representation of people with disabilities in advertising and media worldwide. If you're not familiar with Changing the Face of Beauty, you should be. They are doing really good work. The organization was started by a mom of a daughter with Down Syndrome, who wanted to see more people with disabilities represented in the media.

"People with disabilities represent the largest minority in the world, yet they're the least represented in our media. Our hope is that we will change that."  - Katie Driscoll, founder of Changing the Face of Beauty.

As the mother of a child with a disability, I also worry about my son growing up in a world where kids can be so cruel to those who might look a little different, or who might do things in a different way, but the world we live in is vastly more accepting of people with disabilities now than it was a generation or two ago, and things are changing, slowly but surely, to reflect a more realistic representation of people and the wonderful things that make us unique. There is still a lot that can be done to empower people living with different abilities, and advocating for inclusive imagery is just one way to help change the standard of beauty, and challenge traditional ideas of what is considered "normal".

The results of the photo contest were released HERE.

Photographer, Nathan Gates was the first place winner, with his photos of Liam Hickey. Liam is a wheelchair athlete on the Canadian Senior Men’s National Wheelchair Basketball Team, and is currently training for the 2016 Paralympic Summer Games.

Melissa Pelley took second place for her photos of Brennen and I, and Sheilagh O'Leary was the third place winner. Congratulations to the winners, and a big high five to all contributors for helping to build our local stock photo library!

"We hope the contest helped to change the way our city thinks about “disabilities” and those in our community living with them. Awareness and education can help us build a more enlightened, inclusive, accessible city for all of us." - The Overcast

Best of 2015

2015 was a big year. For us, it was a year full of health and happiness, growth and opportunities.

At the end of each year and the beginning of a new one, I love to reflect on all that has happened and to take stock of what is going right, what needs work, and determine where to focus my energy in the year to come.

Glennon Melton posted the following today on her 'Momastery' blog -
"I don't want a new, better life in 2016. I just want new eyes to see that my life is already staggeringly beautiful."

I agree wholeheartedly. I can honestly say that I am in a place right now where everything seems to be just right, and I wouldn't change a thing.

It was hard to narrow down my favourite photos from 2015. There has been so much love, light, happiness and growth. This wild, beautiful adventure of life has offered so much to my family. Here is just a glimpse of our year in 2015!

Read our story in The Herald - HERE 

It doesn't get much better than this!

I am so thankful for my beautiful family, and my darling little boy. To be a part of his life is a privilege, and I couldn't be more proud.

Thank you to everyone who continues to believe in me, and pushes me to better myself and be the best I can be. Thank you to those of you who are on this journey with me. My year would not have been the year it was if I didn’t have the support of people like you, so thank you for all of the love and encouragement!

I hope that 2016 brings much peace and happiness to all of you! Happy New Year!!!

Love, Julie xo