Tuesday, April 28, 2015

Tulip Tales: Hannah

I am thrilled to be back with another addition to my Tulip Tales series! Lucy-Anne contacted me some time ago about her daughter Hannah. She wrote, "Hi Julie. I was told about your blog, and I also remember you from a music therapy class we took about 4 years ago, when my daughter was only 3. I think your blog is fabulous and honest. Life is very challenging, and most families do not "get it". I understand you do a lot for families facing the challenge of CP, and I'm sure you have met other families with various challenges. Even though my daughter is now 8, we have not reached out, as we have always felt very alone because of how rare her condition is - stuck in survival mode. I would be interested in telling Hannah's story if you like, and would love to connect with you more."

I am always so excited when I receive messages like this one. I love to connect with other parents of children with special needs. I realize the importance of having a reliable support system, even if it is just one person to talk to who can understand what you are going through. We all need support and guidance on our journey, and I am honoured to be able to help in any way I can. Lucy-Anne, thank you for reaching out, and thank you for sharing your daughter's story. 

*****

Hannah is the middle child of three girls. My first pregnancy was very normal, including six months of all-day nausea. My daughter, Lily arrived via standard vaginal delivery, no epidurals, surprisingly average. We decided that we would like to have our children close in age, and wasted little time trying to get pregnant again. Our second child was born just two weeks shy of Lily's 2nd birthday. My pregnancy was again very normal, and delivery was easier than the first, with no complications. We were blessed with two beautiful and healthy little girls, and life was moving along as planned.

Hannah was about 3 or 4 months old when I started wondering why she wasn't reaching the normal milestones, but having a toddler in the house meant we were always busy and truly I wasn't worried. Hannah was a very happy baby even though we did have difficulties getting her to sleep and keeping her asleep. She had an older sister who kept her entertained and I tried not to compare their abilities.

At about 5 months, I expressed my mild concern to my GP about Hannah's development, and he referred me to a pediatrician just to ease my mind. Of course I was reassured by my husband and friends that everything was fine. We were living in Twillingate at the time. I was a teacher on maternity leave, while my husband worked away as a driller, and we both owned and operated a seasonal coffee shop in the area. Two weeks prior to our appointment with the pediatrician in St.John's, Hannah exhibited a behaviour that I had never experienced with any child, mine or otherwise. She was sitting in my lap while I was on the computer, and I had one arm under her armpits. She started to repeatedly slump in my arms, and then regain her muscle tone. I had no idea what was going on, but I knew something was very wrong. Like most worried parents, I immediately went to Google and typed in a description of what I was experiencing. I saw the words infantile spasms, seizures, epilepsy, brain development, and many other medical terms that I had never before concerned myself with. I immediately called my husband and began sobbing on the phone in panic mode, saying that we needed to get Hannah to the hospital right away.

The local hospital was more of a clinic than anything else. Most procedures required a trip to Gander, including having babies, but off I went to see the doctor on duty. He told me that I was overreacting and "worrying too much like many mothers do".  I was extremely dissatisfied with the response and treatment. Hannah even had another spasm in my arms while the attending nurse watched. I decided to try to calm down and give it some time. For the next 24 hours I recorded every strange movement Hannah made, and the next day I eagerly called the Janeway emergency room. After having a phone consultation with a nurse, she said, "If you are concerned you need to come here right away."  I then proceeded to call the office of the pediatrician that we were seeing in two weeks time. The very kind nurse assistant listened to my story, consulted with the doctor, called me back within a half hour and said to come in for a ten o'clock appointment the next morning.

It was about noon, in the middle of the day and I started immediately packing up my car with a medium sized black lab, my two year old, and my 6 month old. We had our entire house in boxes because we were supposed to be moving to a new house in a few days and my husband had to stay behind to deal with the chaos.

The next day everything seemed to happen at lightening speed, or at least that's how I remember it. We saw the pediatrician at 10:00 am, he called the neurologist at 10:15, we saw the neurologist at about 11:30, and by 1:00 we were admitted to the Janeway. Hannah was immediately started on anti-seizure meds to stop the infantile spasms, which had been confirmed by the neurologist. We were told that over the next few days we would have several diagnostic procedures done to attempt to determine the cause of these seizures. Meanwhile, a lawyer had to meet us in the Janeway lobby to sign the last documents for our new house, and my husband was scrambling to get a ride into St. John's as fast as he could.

On day two, Hannah had an EEG, an MRI, and a CT scan. My husband was by my side when the neurologist told us her diagnosis and ultimate cause of the seizures. Our little baby girl had an extremely rare brain malformation called Subcortical Band Heterotopia. Basically, the grey matter in her brain is accumulated in a band in the centre of her brain, and is diffuse throughout her brain. I like to describe it as a "cloudy brain". We were told that this condition often results in developmental delays in all areas, that she may not walk, and that she may not even be able to talk. The doctor said that because the condition is so rare there is a wide range of delays and it would be very hard to predict Hannah's rate of development.

It was like the Earth had been pulled out from under us. In that moment I knew our lives would never be what we had planned or predicted. I also knew that I would learn everything there was to learn and I would do everything there was to do to help my daughter grow and thrive. She was immediately put on valproic acid to treat the seizures, and they reduced significantly. In later months there were many days without any spasms. She continued to be a happy baby, but failed to meet many of her milestones. We proceeded with genetic testing to determine that neither one of us were carriers of the genetic spelling error that caused Hannah's condition. She was a rare gift, and strike of lightning.


Fast forward 8 years, and Hannah continues to struggle with seizures and has significant delays in all areas. However, she is walking, talking, and laughing every day. Some days are harder than others. We have to survive the days with repeated outbursts, screaming and temper tantrums, to get to the days were she laughs and hugs her sisters all day. We moved back to St. John's shortly after her diagnosis to be able to provide Hannah with as much therapy as we could in her early years. It definitely has had an impact.

Hannah has been on many different anti-seizure meds, but as she has gotten older the seizures have become more intense and harder to manage. We very recently started the ketogenic diet to treat her now intractable epilepsy. So far, we have seen a dramatic decrease in the number and intensity of the seizures, but it varies daily. We have high hopes that this intensely monitored diet will help Hannah to move through her day without being a safety concern.

Hannah has been on the diet now for 3 weeks, and we hope to get her back to a full day of school very soon. It is challenging to make the food portable because it requires measuring every ounce of food, while restricting the types of food shes able to have. Like most kids, Hannah has particular tastes and textures that she enjoys, adding more limits to the types of food she can consume.



As a family of 5, Hannah now has a 2 year old sister. We are very grateful for what we have and especially for how well Hannah as progressed. Hannah has taught us how to focus on the important things in life. We have learned to take one day at a time, and to accept that life doesn't always turn out as planned.

*****

Thank you again, Lucy-Anne. I am so glad that you felt comfortable sharing Hannah's story. I know first hand that your child's diagnosis can be a difficult thing to come to terms with, but once you begin to accept it, the weight begins to lift. You said to me, "It's funny how after 8 years I finally feel like I'm accepting that I am not like 'regular moms'. I guess I didn't want to make others feel bad for me, or always be the 'downer'."  Listen. We all have days of being the downer, and dammit.. we deserve those days! Our lives are challenging, there is no question about it. I just hope that in reading my blog, and the stories of other parents, you realize that you are not alone. We've got your back. 

I look forward to catching up with you over coffee (or in my case, tea!).


If you would like to be featured on Tulip Tales, please email me at: juliebrocklehurst@hotmail.com  Please include a brief description of your child and their condition, along with any pictures you would like to share. I will contact you with specific questions.

Thanks!
-Julie

Friday, April 24, 2015

An Art Affair



Megan Morrison holds a place in her heart for people living with Alzheimer's Disease. Having two beautiful grandmothers who have lived with the disease, she has seen first hand how it affects not only the individual, but their family.

She created Newfoundland Art Affairs as a way to engage these individuals in meaningful activity.

Megan says, "I have a dedicated passion for working with individuals living with Alzheimer's Disease and those who care for them. I have facilitated arts-engagement for those living with dementia on a one-on-one basis in both a private home setting and a residential community setting in the St. John's, NL community. I am currently in the final stages of my PhD in the Faculty of Medicine, in the division of Community Health & Humanities at Memorial University of Newfoundland. In 2011, I participated in the Creative Expression, Communication and Dementia Conference in Burlington, Ontario. In 2012, I received the Alzheimer’s Society of Canada and Creative Expressions of Dementia Society Award. In 2013, I attended the Training Institute at the Creative Centre at University Settlement, New York for artists and administrators in creative aging. I have participated in community art classes since a very young age and consider myself mostly self-taught."



An 'Art-Affair' is a half-hour to an hour visit where a person living with Alzheimer's Disease is given an opportunity to do a creative-arts activity. Megan will come to the individual's home or to a residential care-facility, and based on their personality, strengths and their level of ability, she will engage the person in an art-making activity. The session is aimed at enriching the quality of life for the person with dementia as well as those who are caring for them.

"The visits are not "art therapy" in a traditional sense. I am not an art therapist. However, many would argue that art has a natural therapeutic effect. Essentially, I am providing a visit, materials, and the assistance needed to enjoy creating something artistic."

Art Affair activities may include any of the following: watercolour and acrylic painting, mixed media painting, collage, crafts, poetry, play dough or clay activities, working with photographs, print-making, playing with textures, pastels, imitation stained glass, or metaphor imagery put into visual form.


"My experience working with people with Alzheimer's is that while they all seem to follow a similar progression of the disease, their personalities reveal beautiful differences through art and music. I've been looking at how people with dementia communicate through body language and symbolic words and gestures, through a research lens for about 7 years. I have worked as a volunteer as well. I find myself now somewhere in-between. I really love adding to their quality of life and experience of person-hood. I am interested in seeing how the community responds to an arts-based resource of support for families going through this. I'm not an art therapist, but I am invested in art as a means to better health and better quality of life. Individuals living with dementia have so many stories. Some of these stories are based on things you and I may remember, and some of them aren't. Art and creative expression encourages all stories. Our stories are who we are. Our art helps us to enjoy who we are."


Megan, I am so inspired by what you do. It's like we are on opposite ends of the spectrum. I work with children, and spend my days preparing them for their future. I drench their beautiful little brains with knowledge and experiences that I hope will give them the best possible foundation from which to grow.

I don't often think about the later years (the last years), but longevity is in my genes. If I live to be 94 like my grandmother, or 102 like my great-grandfather, I can only hope to know someone as kind as you, who will take the time to engage me in activities to stimulate my mind and soul.

Wednesday, April 22, 2015

Night of Traditions 2015

The Cerebral Palsy Association of Newfoundland and Labrador will be hosting it's second annual 'Night of Traditions' on Saturday, May 23rd.
The event last year was a tremendous success, and we hope to make this year even bigger and better!

Dr. Yasmeen Akhtar is a pediatrician at the Janeway Children's Health and Rehabilitation Centre here in St. John's. She sees children with cerebral palsy as they come through CP Clinic, and she knows the very real challenges that they face. She realizes the importance of an Association that is dedicated to improving the lives of individuals with cerebral palsy and their families, and she has offered, once again, to support our Association.

Dr. Akhtar and members of the Women's Muslim Association have generously offered to prepare traditional dishes from their home countries. Indian delicacies like Butter Chicken, Tandoori Chicken, Vegetable Samosas, and popular naan bread will be presented among a buffet of diverse flavours and authentic Indian cuisine. After dinner, we will enjoy some live traditional Newfoundland entertainment, making it a true 'Night of Traditions'.

You can see photos from last year's event here - Night of Traditions 2014

It's going to be a great night, for an even greater cause. We would love for you to join us!

Email julie@cerebralpalsynl.com for tickets.

http://cerebralpalsynl.com/event/night-of-traditions-2/

Saturday, April 18, 2015

Megan: Forever Dauntless

"We waited nine months to see her adorable little face. She had ten beautiful fingers and ten beautiful toes and was perfectly healthy when we brought her home. Then, a few days later our world came crashing down. Our little Megan Lindsey became extremely ill. She was continuously vomiting and getting weaker by the hour. We took her to the doctor seven times and each time they said it was just a virus. But it wasn’t. Megan lost over two pounds and weighed less than five pounds. After a week and a half she was finally admitted to the hospital. They did several tests, from CT scans to spinal taps. Then the seizures started. Watching her little blue eyes flutter uncontrollably and wondering if she was in pain just made our hearts ache. The nurse said to my husband Jay, "Now would be a good time to call your clergy." We were not ready to give up on her, however we took the nurse’s advice and prayed. I called my grandmother and asked her to pray for Megan as well, because her prayers were always answered.

Shortly after, we received Megan’s first diagnosis. The doctors told us that Megan had a bleed in her brain but she also had a blood clot. One problem could not be treated without interfering with the other. There was nothing they could do for our little angel. Her older sister Celia, who was almost four at the time, was inconsolable. She had waited a long time for Megan. On her third birthday she blew out her candles and wished for a baby sister. The next day, I found out that I was going to be a Mom again! Celia even named her, and Megan completed our little family.

Later that day, Megan was transferred to McMaster Hospital in Hamilton, Ontario. After more medical tests, we got her second diagnosis - Megan had suffered a stroke. We could not believe that a little infant could suffer so much in the first two weeks of her life. We were numb! Our tears were unstoppable and I don’t think I ever saw as much fear in my husband’s eyes as I did that day. He usually was the strong one but he was hurting just as much as I was.

Over the next few days, the doctors monitored Megan constantly and we refused to think negatively. Finally, we received our first bit of good news. The bleeding had stopped and the blood clot was getting smaller. We were ecstatic! Then they gave us the bad news. They were not sure if Megan had suffered brain damage and what her quality of life would be as she grew. We didn’t care. Our little girl was still breathing and that was all that mattered. My grandma’s prayers were answered.

After genetic testing, they also told us that Megan, Celia and my husband had a blood clotting disorder called Factor V Leiden, which probably contributed to Megan’s stroke. There was more to worry about but we would face it together. Our family was still strong as long as Megan was in it.

Immediately, Megan began therapy to help correct the increased tone in her left arm. We used to call it her 'little chicken wing' arm because she held it so tightly against her chest. She started taking medication for seizures and eventually outgrew her dosage and the seizures stopped. Everything the doctors said might happen didn’t happen. Megan was growing and developing like any other child! Everyone including her doctors were amazed by her progress, and she had many doctors from around the world visiting Sick Kids Hospital in Toronto, completely in awe of her determination and strong will. We never treated her any differently than our oldest daughter and we were determined to give her the best possible outcome.  

At nine months old, Megan began walking. It was a huge milestone for her that no one had expected to happen so soon. We knew she was a force to be reckoned with when she survived a stroke, but we never expected her to be this stubborn! She was imitating everything her sister did and nothing was slowing her down, but just before she turned two we discovered that her left leg wasn’t quite the same as her right. She couldn’t wiggle her toes on her left side and her left leg and foot looked a lot smaller than her right. She was off-balance and was always up on her toes. There was also increased tone again in her left arm. 

The official diagnosis came and it was one that truly scared us. Megan was diagnosed with cerebral palsy. Days later, Megan started physiotherapy and she never complained once. She was not going to let this get her down. As Megan grew, we knew she was not your ordinary little girl. The brain is a very complicated thing, but luckily for Megan, parts of her brain took on different functions that it normally wouldn’t. It completely remapped itself. The damage she had suffered as in infant didn’t affect her at all. The tests revealed that the scarring was there but she was showing no residual side effects. She learned how to read at age three, she walked early and was even evaluated by the psychology department at Sick Kids Hospital which determined she was gifted in many areas.

When Megan was nine years old, the seizures came back and we were devastated. They caused her so much physical pain and the migraines were unbearable. The seizures caused her leg and arm to get tight again and she had to start physiotherapy from scratch to correct it. This time she needed a brace for her leg, and she was not happy. The teasing at school began and the worst was watching her classmates imitate her having a seizure. It was the first time I ever saw my little girl so sad and she went into a depression. Even today, her biggest fear is that she will have a seizure when she is by herself.


Megan was introduced to the Heart and Stroke Foundation. They asked her to tell her story to different groups, including several local schools so that she could educate them on what it was like to live with her condition. She became an awesome public speaker and realized that for her it was the greatest form of therapy. Her confidence was coming back and the sparkle was in her beautiful blue eyes again. She went on to win the Cambridge Children’s Hero award the following year for her work and we were thrilled. She even gave a speech for the Stroke doctors at Sick Kids Hospital for Family Stroke Day and they were all in tears by the time she finished. They finally could look beyond the medical terminology and connect to her as a person living with a disability. It was truly a remarkable thing to witness.

When Megan was given a second chance at life, we were too. We completely changed the way we lived and decided we wanted to be better people in our community. As a family, we made it a rule that we all had to help out at least one charity each year, but of course our girls did many more. They learned at an early age that there is no greater reward in life than giving back and helping others. 

Four years ago we moved back to Newfoundland and both Megan and Celia have excelled. Celia is now studying Business Management and Marketing through the College of the North Atlantic and Megan is a straight A student at O’Donel High in Mount Pearl. 

Last year, with her social action team at St. Peter’s Junior High, Megan got involved with an organization called Free the Children, and was asked to be a student speaker to kick off their 'We Create Change' Campaign Tour Launch. It was an amazing speech that was streamed live across the world. (You can see it below).




Megan also won the Johnson Horizon Leadership Scholarship and became Easter Seals Ambassador 2014. Through Easter Seals, she learned how to play wheelchair basketball and was invited to the camp tryouts for the National Canadian Under 25 Woman’s wheelchair basketball team. She declined this year because she felt she was not ready emotionally for such a big commitment, although it is a dream she may pursue down the road.


We discovered that Megan had a beautiful singing voice and with the help of her amazing vocal coach Justin Nurse, she has become quite the performer. He believes in her and never lets her doubt herself. He challenges her, and because of that, 'Megan’s Night of Music' was born. Last year, Megan hosted and performed at her own concert and raised over $1200.00 for Free the Children and Easter Seals.


Easter Seals has supported Megan and our family since we moved to Newfoundland. They are our extended family and have helped Megan in too many ways to count. Last year they introduced her to Sean McCann, an amazing person who has become quite the supporter of Easter Seals. She was honoured to meet him.

Megan wrote her first song called Forever Dauntless and our family friend Jon Pike from Everglow helped her put music to her beautiful lyrics. Although the song was originally written about a character in a book, it actually reflects Megan’s life and I am certain she wrote it thinking about herself. Easter Seals sent the song to Sean and he asked Megan to perform it with him at the Easter Seals gala last December. Megan was so humbled to perform on a stage with such a musical inspiration.



And now she is at it again! Her second concert, called Megan’s Night of Music 2: “Forever Dauntless” will be held at the Husky Energy Easter Seals House on May 2, 2015 at 7:00pm. The acts this year include Megan, Justin Nurse, Erin Winsor, Everglow, Rex Goudie, Brianna Goss, Michael Duffy, and some of the music therapy participants. With the help of her big sister Celia, this year’s concert will be even bigger and better. It is so heartwarming to see my girls work together to give back to an organization that has given so much to our family. The one thing that I admire about Megan the most is that she never lets her disabilities get in the way of achieving her goals. She has been seizure-free and off her medication for over five years now and we are optimistic that the seizures won’t return. Today, she still has physical challenges and lives with chronic pain and migraines but she is learning to cope with help from her amazing pain therapist at the Janeway. She has learned to love and accept the person God wanted her to be and she absolutely embraces life and never takes a single day for granted. She is truly the strongest person I have ever met and I am so proud to be her Mom!"


*****
Thank you, Brenda for sharing Megan's story. She is an incredible young woman, and a remarkable talent. I am so happy that our paths have crossed. Megan said in her speech, "I believe that each of us has the power to enrich the lives of others, no matter our differences." Her words are motivating and inspiring, and she makes me want to be better and do more. "Searching to belong, eager to create change, and longing to make a difference." We are more alike than I realized.

Go see Megan’s Night of Music 2: “Forever Dauntless” on May 2nd!


Sunday, April 12, 2015

Stroll and Roll 2015

Yesterday we took part in the Easter Seals Stroll and Roll. We love the Stroll and Roll! This was our fourth year participating - I wrote about last year's event HERE. The Stroll and Roll is a wonderful fundraiser for Easter Seals, raising much needed funds to allow the organization to continue to offer quality programs for children and youth with disabilities.

As much as it is about raising funds, it is also about bringing together a community - families, children, parents and caregivers, all united by a common thread. We live with, or support persons with disabilities. I have written many times about how important it has been for me to connect with other parents who have experienced similar challenges, and I am lucky to now have so many friends in this community. It's the people we meet at events like this one who help me to think differently about disability and help to shape the way I view our new 'normal'.

Parents of children with disabilities need connection and advice along the way. I was happy yesterday to talk with friends both familiar and new. I value input from both parents of children with special needs, and adults with disabilities who have lived what my child is living now.

It is motivating and empowering. There is strength in numbers. I learned years ago that things don't always go as planned, but I know now that some of the most unexpected things in life often turn out to be the best things that ever happened.

I am thankful to be part of such a supportive community. I am thankful for Easter Seals. 



The top fundraising team this year was The Narrows Progress Club (above). The Narrows Club is a St. John's charitable organization devoted to helping children and youth with disabilities, and they have been very involved with Easter Seals over the past few years.


Congrats on another successful Stroll and Roll, and thank you to everyone who sponsored Brennen!
If you would still like to donate, you can do so HERE.

-Julie

Friday, April 10, 2015

A Shared Responsibility



This week, I attended A Shared Responsibility: A Workshop on Emergency Preparedness for Persons with Disabilities.

It is important that everyone have a plan in place in case of emergencies. All Canadians are encouraged to be prepared to cope for at least the first 72 hours of an emergency, while emergency workers focus on those in urgent need. People with disabilities may have special needs to consider in the event of an emergency, and if you have a disability, it may require extra planning to handle an emergency.  

Imagine that you are a person who uses a ventilator for breathing, and can only breathe on your own for about two hours without the ventilator. It would be essential in an emergency evacuation to make sure that the ventilator (and any other medical supplies) go along with you in an emergency.

Imagine that you are a person who lives with cerebral palsy. You have some cognitive impairment, communication delays, and are taking a new medication. In the event of an emergency situation, it would be important for first responders to speak to you calmly and with kindness and patience. They would need to know where to find your medication, if you weren't able to communicate that information, and it would have to accompany you in the case of an evacuation.

Imagine the situation in Gander during the September 11th attacks in 2001. There were over 6000 passengers diverted to that area, all needing shelter, food and accommodations. Of those 6000 passengers, there were many with disabilities. Some with wheelchairs that needed help with transportation, and some with service animals that were stuck in cargo. Though things went as well or better than could be expected, given the circumstances, it was a wake-up call for our province about the need for emergency preparedness for persons with disabilities. 

It truly is a shared responsibility. It is important that people with disabilities and their family members make plans to protect themselves in the event of an emergency. In addition, first responders need to know how to work with people with disabilities to treat them or evacuate them safely and quickly.

This project has two focuses. The first is to bring increased awareness of disability-specific issues to first responders as well as municipal and community leaders.
The second focus is to educate persons with disabilities about their responsibilities and need for personal planning in the event of emergencies. Persons with disabilities can lessen the impact of a disaster by taking steps to become prepared before an event occurs.

Lead by the Coalition for Persons with Disabilities, this initiative has been guided by a 21-member task force that includes organizations and individuals that have experience in emergency preparedness and/or matters concerning persons with disabilities.

The federal government has considerable information available about emergency preparedness and there is great awareness worldwide about the need for planning. The Coalition gathered existing information and developed a resource booklet that is specific to our province. They then engaged first responders and others interested in emergency planning, providing them with training to support the use of the resource booklet. 


A Shared Responsibility - An Inclusive Emergency Planning Guide - A Resource for First Responders and Community Leaders can be downloaded online HERE.

The PREP Kit - A Personal Resource for Emergency Preparedness can be found HERE. You can edit the form and personalize it for your own specific needs.

The Government of Canada also has an online Emergency Preparedness Guide for People with Disabilities / Special Needs.

We never know when an emergency might happen. They can occur suddenly and sometimes without any advanced warning. Being prepared for an emergency situation can make a big difference in the impact it will have on a community and its people. Download the PREP Kit, fill it out, and stick it on your fridge. First responders are trained to look for it there. Emergency planning can save lives. 

For more information on the Shared Responsibility project, contact Kim White, Manager of Strategic Initiatives with COD-NL, or Kelly White, Executive Director, COD-NL at info@codnl.ca



"Never doubt that a small group of thoughtful, committed citizens can change the world; 
Indeed, it's the only thing that ever has." -Margaret Mead


Saturday, April 4, 2015

Love Local: Figgy Duff Designs


http://www.figgyduffdesigns.com/ Handmade apparel & accessory designs by a small-town girl from 'Around da Bay'.

Sisters, Jess and Jana are "firm believers that life’s too short to not spend as much time as possible doing the things you love." For them, that includes baking, hair styling, make-up, fashion design, taking pictures, writing, eating, and traveling. You can follow their adventures on their Blog - Jess & Jana: We're Always at Somethin'.


I am a little bit obsessed with these girls, I'm not gonna lie. I mean, not obsessed in a crazy stalker sort of way. It's just that I love everything they do and want to follow them around and join their awesome adventures and eat all of their delicious sweets and have them dress me up and do my hair on a regular basis. What's so crazy about that?!

Jessika and Jana have a home-based baking business called Best Kind Bakeshoppe, located in Port-de-Grave, NL. They bake cupcakes, brownies, cookies and macarons, all from scratch and with only the most delicious of ingredients. 



You can find the girls selling their sweets on weekends at Some Good Market in Bay Roberts, and once a month in St. John's when Some Good Market Goes To Town!  Be sure to get there early because they sell out FAST! Cupcakes with names like Lemon Cheesecake and Strawberry Milkshake, Creme Egg and Cotton Candy Macarons, and Peep Brownies are to DIE for!

Jana is the driving force behind her clothing line, Figgy Duff Designs. She says, "Figgy Duff Designs is my own interpretation of the inspiration I find all around me here at home - sometimes it's the scenery, sometimes it's a song, sometimes it's the food.  These creations have been building up in my soul for quite some time - it's been a dream at least 15 years in the making. I've been sketching clothing since I was about 12 years old, and I spent a couple of years studying Fashion Design & Merchandising, so Figgy Duff just made sense."






I rocked this shirt on Patty's Day


But first, Brennen and I had to take a 'sealfie'!



Awesome work, girls! I am a fan, and will be following you for a long time! (Not literally. You know, not in a crazy stalker sort of way!)

Figgy Duff Designs is available in St. John's at Model Citizens on Duckworth Street and online at www.figgyduffdesigns.com