Sunday, March 29, 2015

The Trinity Loop

Every now and then, as often as we can, Andrew and I like to go on little adventures - road trips or 'bay-cations' (like I talked about HERE). We've had so many great adventures and visited so many awesome places around the island, mostly before I started this blog, so I haven't been able to share them, until now! I've decided I am going to start posting some of our adventures from the past few years. We've had some incredible experiences, some crazy times, and we have LOTS of beautiful photos to show for it.

I'll start with the Trinity Loop. A couple of years ago, Andrew and I took a drive out to the town of Trinity (about three hours from St. John's, on the Bonavista Peninsula). Trinity is known as the "Pearl of Newfoundland Outports" and a "Must See" for visitors to our province. It is quaint and picturesque, quiet and colourful.


But this post is not as much about the Town of Trinity, as it is about the Trinity Loop.

The Trinity Train Loop was once part of the Newfoundland railway, until it closed in the 1980's. Instead of taking apart this stretch of the railway, it was turned over to the Town of Trinity, and then sold to an entrepreneur, who repaired it and turned it into an amusement park with a working train and passenger cars. The amusement park operated until 2004, and has been left, abandoned, ever since.


Visiting the site today, you will find old train cars in various states of disrepair. 
There is a stage that once showcased live entertainment, and a canteen that apparently once sold "Good Food". 


The railway was destroyed quite significantly during Hurricane Igor in 2010. 
All that remains are some washed out sections of the tracks leading down to the old amusement park.


We have some wonderful memories of our time in Trinity. We had lunch at the Dock Marina Restaurant, where I enjoyed fresh mussels harvested from the waters just off-shore (we saw the nets as we drove in). Andrew had the North Atlantic cod fish cakes, which were amazing. We shopped at the Dock Art Gallery and Craft Shop, and Andrew bought me an iron letter-opener at the Green Family Forge. (There is something so romantic about opening a hand-written letter with an iron letter-opener made by a local blacksmith in an outport museum!)

Andrew and I love to explore the little nooks and crannies in the tiny communities around our province. We will continue to make our own adventures, and I look forward to sharing some more of them here on my blog! (**Our next adventure involves getting new passports! Stay tuned!)

Thursday, March 26, 2015

Purple Day for Epilepsy

http://www.purpleday.org/


Every year, on March 26th, people around the world wear purple to show their support for those with epilepsy and to raise awareness about the condition.

Approximately 50% of children with cerebral palsy have seizures - episodes in which abnormal nerve activity disturbs the functioning of the brain. We don't typically say that Brennen has epilepsy, but that he has a seizure disorder along with cerebral palsy. Seizures are so common among children with cerebral palsy because brain injuries provide focus for abnormal nerve impulses to occur. Children with quadriplegia (like Brennen) or hemiplegia are most likely to have seizures.

Brennen has been having seizures for quite a few years, and though we have gotten used to them, it is never easy to watch your child go through something so traumatic. Brennen's seizures are usually short, lasting just a minute or two, and he is very sleepy afterwards. We have tried a number of different medications to try and control his seizures. Many have had side effects that we didn't like, and some just did not work for him. It is a bit of trial and error to get the proper therapeutic dose, but we seem to have found the right prescription for Brennen, and his seizures have been less frequent and less severe. I used to get texts from his teacher at school saying, "Brennen just had a little seizure. He is doing fine now, in someone's arms having a cuddle and a rest." I haven't gotten a message like that in a few months. (That being said, he had a small seizure yesterday at breakfast, and missed school because he slept the whole morning). Brennen is certainly not seizure-free, and probably never will be. We have accepted this as our 'normal', and we try to make him as comfortable and as content as possible. 

Brennen is followed closely by a pediatric neurologist, and has EEGs (Electroencephalograms) regularly to measure his brain wave patterns. EEGs are painless and non-invasive, and typically take about an hour. They also usually videotape his EEGs to try and record a clinical seizure on tape.


Brennen has only ever had one seizure that lasted longer than five minutes. It was not stopping on its own, so I had to administer emergency medication (Ativan), which we keep on hand "just in case", and we took him directly to the hospital. He had come around by the time we got there, so they just checked his vitals, monitored him for a couple of hours, and sent us home.

As scary as it is, anyone can have a seizure at any time. One in every ten people will have a seizure at some point in their life, and over 10,000 people in Newfoundland & Labrador have epilepsy right now.

A seizure may appear as a brief stare, unusual movements of the body, a change of awareness, or body convulsions.

Seizure First Aid


First Aid for seizures involves responding in ways that can keep the person safe until the seizure stops by itself.

Here are a few things you can do to help someone who is having a generalized tonic-clonic (grand mal) seizure:

  • Keep calm and reassure other people who may be nearby.
  • Prevent injury by clearing the area around the person of anything hard or sharp.
  • Ease the person to the floor and put something soft and flat, like a folded jacket, under his head.
  • Remove eyeglasses and loosen ties or anything around the neck that may make breathing difficult.
  • Time the seizure with your watch. If the seizure continues for longer than five minutes without signs of slowing down or if a person has trouble breathing afterwards, appears to be injured, in pain, or recovery is unusual in some way, call 911.
  • Do not hold the person down or try to stop his movements.
  • Contrary to popular belief, it is not true that a person having a seizure can swallow his tongue. Do not put anything in the person’s mouth. Efforts to hold the tongue down can injure the teeth or jaw.
  • Turn the person gently onto one side. This will help keep the airway clear.
  • Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
  • Stay with the person until the seizure ends naturally and he is fully awake.
  • Do not offer the person water or food until fully alert
  • Be friendly and reassuring as consciousness returns.
  • Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home without help.

Here are some things you can do to help someone who is having a seizure that appears as blank staring, loss of awareness, and/or involuntary blinking, chewing, or other facial movements.

  • Stay calm and speak reassuringly.
  • Guide him away from dangers.
  • Block access to hazards, but don’t restrain the person.
  • If he is agitated, stay a distance away, but close enough to protect him until full awareness has returned.

 

Consider a seizure an emergency and call 911 if any of the following occurs:

  • The seizure lasts longer than five minutes.
  • The person has another seizure soon after the first one.
  • The person cannot be awakened after the seizure activity has stopped.
  • The person became injured during the seizure.
  • The person becomes aggressive.
  • The seizure occurs in water.
  • The person has a health condition like diabetes or heart disease, or is pregnant.

    On March 26th, wear purple in support of all people who live with epilepsy.
    Help eliminate the stigma and fear associated with epilepsy and brain trauma!


    The Canadian Epilepsy Alliance has a wonderful new website with lots of information on epilepsy and seizure disorders. 

    Epilepsy Newfoundland & Labrador also offers a range of programs and services to meet your needs concerning all aspects of living with epilepsy.

    Thursday, March 19, 2015

    Possible

    I've known Abby Quigley for almost a decade. She is a vibrant young woman with a passion for music and a strong desire to make people happy. She is funny, intelligent, and a social butterfly. Abby is 16 years old and has Spina Bifida.

    For as long as I've known Abby, I've known that there is music in her soul. For her, it is a source of joy and a form of creative expression. Abby plays guitar and sings and wishes to one day become "a music therapist, or a famous recording artist, whichever comes first."

    Her love of music started back when she was a little girl. Here is a clip of Abby at around four years old singing 'Fireman Fred'!



    In 2014, Abby recognized a "wish" that was forming in her heart. She wanted to write and record a song with her favourite band, Everglow. She skillfully composed the lyrics to a song she titled "Possible", and sent them off with a note to the Children's Wish Foundation.

    She was called in for a meeting with the Foundation, and when she arrived, the boys from Everglow were there to surprise her. They read her lyrics and were inspired. They went straight to work, composing a catchy, upbeat song to highlight her encouraging lyrics.

    Since that first meeting, there have been many rehearsals, a studio recording, live performances and interviews, and a whirlwind of activity for Abby and Everglow.

    The video below, from videographer Ben Smith, shows just how amazing this girl is and how incredible life can be when we believe in endless possibilities. **MUST WATCH**




    And here is the Official Lyric Video for "Possible" by Abby Quigley



    Abby has enjoyed every moment of hanging out with the band.

    Even though I’m short and I’m in a wheelchair, they make me feel like I’m no different than anybody else. Jon Pike and Gordon Huxter are so inspirational to me. Music is something that makes me really happy. It's something I want to do for a long time, and that's what I want people to understand. Just because you're different, doesn't mean you can't accomplish things. It might be something that is more difficult for you to do but with a little bit of faith and determination it is possible!!"



    Abby's Mom, Lori has been right by her side every step of the way. She says, "The people at the Children's Wish Foundation were amazing. They were so kind and considerate. Even though they had never done anything like this before, they made it all happen and then some. Abby was the focus for them, her happiness was first and foremost."

    "This whole experience came at a time when her self-confidence was wavering, unfortunately, due to typical junior high issues. Having her wish granted made all the difference, and we have our positive, confident girl back!

     
    Abby says, "Thank you for everyone's continued love and support during this amazing journey with Everglow and the Children's Wish Foundation. It means the world to me!"

    Thank you, Abby, for showing us that anything really is possible and that dreams really do come true. Here's to you, Abby, and to endless possibilities! You can change the world with your words and your song.




    Monday, March 16, 2015

    Early Explorers


    Our friends at Little Passports have introduced a fun new subscription line called Early Explorers. I say "friends" because I recently got an email from our contact at Little Passports saying, "Hi Julie, I was thinking about Brennen today and wondering if he liked the Early Explorers Kit?". Yup. Friends.

    Early Explorers is geared towards a younger age group than the original Little Passports, and we were excited to give it a try! Brennen and I really enjoyed the Little Passports World Edition, which I reviewed HERE. Though it was intended for ages 5-10, some of the activities in that subscription, like the activity book and online games, were too advanced for Brennen. I'm sure many other parents of children with special needs would find the same thing, and though it can be difficult to have to look to a younger age range, it is important to find what works best for your child. It took me a long time to get my head around that, and to come to terms with that aspect of our life, but if Brennen will get more enjoyment from a "preschool" activity, then that is what we will do!  


    Our first month's Traveler Kit arrived just last week. It came with a funky orange suitcase (we LOVE orange!), a wall-sized World Map, an activity booklet, luggage tag, stickers and a wall decal.



    Each month of the subscription provides a different World theme, such as Music, Animals, Food, Art, Oceans, Natural Wonders and World Discoveries. Our first month's World Theme Kit was "Landmarks", and included an activity booklet, a flashlight adventure game, stickers and wall decals, and a set of miniature landmark souvenirs, including the Eiffel Tower, the Great Sphinx of Giza, the Great Wall of China, the Taj Mahal, and the Leaning Tower of Pisa.


    We have found the Early Explorers kit to be much more developmentally appropriate for Brennen. The souvenirs are small enough for him to hold in his hand, and allow him to be involved in the adventure while I read to him about different countries. I'm excited to see what theme we will receive next month!


    Little Passports Early Explorers is available in a 12-month, 6-month, or monthly subscription plan. Click on the link below to order yours!

    Tuesday, March 10, 2015

    Faces of Newfoundland, Episode 2

    Faces of Newfoundland, a photoblog capturing faces and stories from across the province, proudly presents a series of collaborative videos "made with you, for you, to help bring us all together".

    A couple of months ago, I talked about how Brennen and I were photographed and interviewed for Faces of Newfoundland (read HERE). 

    Now, take a look at these two incredible videos.. and have a look out for my boy! He makes a couple of appearances in the second one!

    With the perfect mix of people and nature, these videos provide a wonderful depiction of what our beautiful province consists of. If I didn't already live here, I'd wish I did!

    Thank you, David, for including us in this project!







    Sunday, March 8, 2015

    Just One More Thing

    I'm going to get straight to the point with this one - Brennen's spine has a pretty significant curve. We have been keeping a close eye on it, with x-rays every 6 months and regular check-ups with an orthopedic surgeon. A few months ago we had a foam insert made for his wheelchair. It was molded to his back to keep him upright while seated, and he is quite comfortable now in his chair. The issue is when he is out of his wheelchair, he tends to lean to one side, and this is not helping things. The curve in his back is becoming more pronounced. His right shoulder is lower than the left, and it is starting to affect his hip - the same hip he had surgery on a couple of years ago. After our last set of x-rays, we were referred to another orthopedic surgeon who specializes in spinal curvature.


    Brennen has neuromuscular scoliosis. "Neuromuscular scoliosis occurs in individuals of any age and secondary to another diagnosis such as Cerebral Palsy (CP) where significant weakness or conversely significant high tone or spasticity is present. In either case, this muscular imbalance & lack of trunk stability, over time, causes curvature of the spine."

    It was determined that Brennen is not yet a candidate for surgery. The curve in his spine can be straightened with support, and so we have decided to try a brace, or soft body jacket, to help prevent the curve from worsening.

    Brennen now has a custom TLSO Brace (Thoraco-Lumbo-Sacral-Orthosis), that he will wear only at home and only as often as he can tolerate it. He surprisingly doesn't mind the brace at all, and actually enjoys sitting up nice and tall with it! My hope was to avoid surgery, but I'm not sure we are going to do that. We may just be putting if off for another few years.

    On our last visit with the orthopedic surgeon, we discussed a little bit of what was involved with spinal fusion surgery. He asked if I wanted to see on an x-ray what the surgery looked like, and I guess by the various shades of white I turned, it was decided that I'm probably not ready for that just yet.


    I know that a couple of years ago I would have had a much harder time with this brace. It looks so institutional, so restrictive and confining. I remember when Brennen got his first pair of AFOs (Ankle/Foot Orthosis), when he was just two years old. I was saddened by the fact that he needed them. That he needed aids to keep his feet at the proper angle. It was just one more 'medical' thing added on to him - like the medication, and the glasses, and the neck brace, and the wheelchair and the standing frame. There was always something being added.

    I got past that apprehensive feeling by the second pair of AFOs, and by the third pair I was excited to help Brennen pick out a funky space pattern. (There were always way more patterns available for girls, like bows and rainbows and hearts and butterflies, but Brennen has rocked some pretty cool camo over the past few years!)

    We now know lots of little ones who wear AFOs, but I have never seen a body brace like this one. I asked the orthotist who was doing Brennen's fitting if they did many of these. He said, "Yeah, we do them for car accidents." Yeesh.


    So, anyway, I'm ok with the brace. It's just one more thing. One more thing to add to my STRESS list (Stuff To Remember Every Single Second). It is a constant and ever-growing list, but if I deal with one thing at a time, one step at a time, one day at a time, I can manage it.

    Brennen has been doing surprisingly well these past few months, but I cannot deny the true and very real pain of knowing that my child has to experience a life that has so many struggles. The journey we are on is a unique one, and I have come to terms with the fact that there will always be challenges and road blocks along the way. In the meantime, I will invest all of my time and love and energy into my son and supporting every single one of his complex needs.



    Wednesday, March 4, 2015

    A Man Named Cecil

    Through my work with the Cerebral Palsy Association of NL, I have been given the incredible opportunity to know and work with some truly remarkable people. One of the individuals who immediately created an impression on me is a wonderful man named Cecil Whitten. Cecil is kind, compassionate and a true gentleman. He has taught me a lot about what it means to live with a disability. The way he speaks of his childhood and the support he received from his mother and father gives me confidence in the fact that I am doing the right things for my own son.

    I am pleased to introduce you all to my dear friend, Cecil Whitten.

    *****

    Cecil was born in St. John's, NL and has spent his lifetime contributing to initiatives to make the community he loves a better place for everyone. His drive stems from the values instilled by his parents, the late Cecil and Bessie Whitten. Steeped in pride, hard work, passion and a genuine sense of helping others, these values continue to permeate his approach to everything he does.


    In the face of much adversity in his life, when others said he couldn't do things, he always believed he could. Through a positive outlook on life and pure grit and determination, Cec went on to not only educate himself but become an inspiring educator for others, both in and out of the classroom. After graduating from Prince of Whales Collegiate, he went on to post-secondary education at the College of Trades and Technology, as well as Memorial University of Newfoundland. He then worked in various capacities in the non-profit sector before starting his teaching career in Carmenville in 1977. In 1983, Cec became employed by the College of the North Atlantic (St. John's Campus) as an instructional assistant in Adult Education. He remained in that position until he retired in 2005. In retirement, Cec has become an author and poet, having several articles published in books and magazines.


    Cecil continues to volunteer with numerous groups and organizations and has been a member of The Board of Provincial Adult Education Association, continues to serve as a member of The Governor General's Canadian Leadership Conference, served on the Board of Empire Village Condominium Association, participates as a member of Men's Fellowship with the Salvation Army Temple and much more. He is currently an honorary member of The Provincial Council of Scouts Canada and serves as a board member of The Cerebral Palsy Association of Newfoundland & Labrador.

    Cec has received many awards over the years, including The C.A. Pippy Award and the Cecil Hart Memorial Award for service to Cerebral Palsy in Atlantic Canada. He was also an Easter Seals Ambassador for the Easter Seals Association of Newfoundland & Labrador in his youth.


    And of course, Cecil is no stranger to the St. John's City Council and currently volunteers on three committees; the Para-Transit Advisory Committee, which he chairs, the Cruise and Taxi Committees as well as the Provincial Volunteer Week Committee. His infectious "can do" attitude and positive energy is a tremendous asset to the City. He tackles difficult issues head-on and represents what he feels are the best interests of the constituents living in St. John's. He has been a long-time advocate of people living with disabilities and the senior community. He believes that a city that is accessible to the least mobile of its citizens is a better city for everyone. He believes in balance between old and new heritage, protecting the best of the past while allowing the necessary growth and change that will ensure the future vitality of the City. He believes that through open dialogue and discussion, we, as citizens, can build a city that our children and grandchildren will be proud to live in. It was on this platform that he ran for Councillor at Large for the City of St. John's in 2013.

    Cecil is married to his wonderful wife, Tina. They have a son, three grandchildren, and a large circle of friends. 

    Below is a photo of Cecil and my son, Brennen at the CP Conference that was held here in St. John's in 2011. Brennen was just a little mite, and I was so excited for him to meet Cecil, an older gentleman with cerebral palsy who has defied the odds and has enjoyed a long and happy life. I knew that we had a lot to learn from this man. I had so many questions for him, about the experiences he's had and the challenges he's faced. I still do have many questions, but the answers are beginning to make a lot more sense to me.


    In a recent discussion about health care and government services, Cecil talked about how once he turned a certain age, he no longer qualified for supports because of his disability. It was as if all of a sudden he was "able-bodied".

    I, somewhat jokingly, said "Wouldn't that be nice!", to which Cecil replied, "No, I wouldn't want that. I have had a wonderful life, and I wouldn't change a thing about it."

    Cecil, you are the real deal. You are an inspiration to myself and to so many others. I am happy to know you, and honoured to call you my friend.

    Sunday, March 1, 2015

    Love Local: Ragmaw



    Rich designs, compelling patterns, East Coast inspiration.

    Megan Natasha is the artist and owner of Ragmaw. She grew up in Central Newfoundland and has lived in St. John's for over ten years. Much of Megan's childhood was spent with her grandparents; her grandmother teaching her to sew, and her grandfather teaching her about hammers and hardware in his workshop.

    In 2013, Megan followed her life-long dream of creating unique handbags for a living when she opened Ragmaw, a studio-based handbag business. The word 'ragmaw' is actually an old Newfoundland term referring to a woman or child wearing tattered, torn clothes - a nod to creative resourcefulness.

    Megan prints all of her fabrics with her own drawings and designs. She also does the pattern drafting, sewing, and leather work on each piece! You can meet Megan and purchase her work at her studio, located inside the Quidi Vidi Plantation.


    The Quidi Vidi Village Plantation is an incredible new facility situated on a wharf in the heart of historic Quidi Vidi Village. “The Plantation will serve as a craft enterprise incubator for emerging artists wishing to pursue careers as professional craftspeople in Newfoundland and Labrador. Ideally situated in the fishing outport of Quidi Vidi Village within the city limits of St. John’s, the Plantation will also function as a destination for those wishing to explore a unique corner of one of the oldest cities in North America.”

    The public are invited to watch and interact with the craftspeople as they create unique handcrafted items in a series of ten purpose-built studio spaces. There is a potter, a printmaker, jewelery maker, a textiles artist, and more. Each with a unique set of skills creating beautiful artwork in a stunningly picturesque environment. If you haven't been to the Plantation yet, I would absolutely recommend it. It is here that the past and present come together, and pave the way for something exciting and new!


    Find Ragmaw on Facebook