Thursday, January 29, 2015

Almost 10

Brennen will be ten years old next week. A week from today, in fact.

As his birthday approaches, I have found myself looking through old photos, recalling past events and just reveling in the memories we have made over the last *gulp* decade.

Just a quick post tonight to acknowledge these feelings, the enormity of the emotions that come to the surface when I think of how much I love this little boy.

Brennen, I love you, and I love being your Mom.


"When I tell you I love you, I don't say it out of habit or to make a conversation. 
I say it to remind you that you're the best thing that ever happened to me."

Friday, January 23, 2015

Love Local: Juniper Clothing


Juniper is a clothing company based in St. John's, Newfoundland and Labrador.

Their designs take inspiration from our tiny spot in the world. Our natural landscapes and unique dialect are used to create designs that are low-key, different and simply put together.

Launched in the Spring of 2014, the company began with just a few t-shirt designs. Thanks to the support of the local people and local retailers, they have been able to expand their product selection to include new shirt designs, hoodies, hats and art prints. All of their products are North American made using quality fabrics.

Juniper Clothing is a proud supporter of the charity Forests without Borders. A portion of all sales support this organization's initiatives, which are aimed at protecting, conserving and restoring forested lands in Canada and internationally.


 Come on we goes!

Best Kind! 

(And then this happened..)

  
We love their signature "Mountain and Tree" tee!

Juniper Clothing is available at The Outfitters on Water Street in St. John's, PSEUDIO stores across Newfoundland, and online at http://juniperclothing.ca/

Shop local! Support local small businesses and contribute to the well-being of our local community. 
Embrace what makes us unique. Juniper Clothing is doing just that!


Friday, January 16, 2015

Yippee! Wheelchair Seat Protectors!

You guys! Remember way back in 2014 when I was super excited about a new line of Yippee! Sheets - waterproof bed sheet protectors I had discovered for Brennen's bed? (I wrote about it HERE).

The same Yippee! company has just released a new line of wheelchair seat protectors made in ALL BLACK (top & bottom), with a quilted top layer and waterproof bottom layer. They are available in two sizes: Standard (approx. 18" x 16") and Small (approx. 12" x 12").

I was happy to consult with creator and Super-Mom, Nicole Maunder and input on the design phase of this awesome new product!

Yippee! Sheets already carries a line of seat protectors that are available in a range of colours and funky patterns. These would be ideal for a car or other standard chair, but the wheelchair seat protector is designed to be discreet in all black. It is almost invisible when placed on a wheelchair seat!

The wheelchair pad is machine washable and reusable to protect your seat time after time and keep it clean, dry and looking new!


The pad is virtually invisible on Brennen's chair, and can't be seen at all when he is sitting on it.

Thank you, Nicole, for recognizing the needs of individuals with disabilities and their families, for creating such a useful product, and for helping to take some of the stress away from our overly hectic lives.


Visit www.yippeesheets.com to view and purchase.

Monday, January 12, 2015

Reason for the Rink

The Reason for the Rink is a labour of love for Todd and Kim Churchill. Todd has built an enormous (95' x 46') ice hockey rink complete with boards and ads, painted lines, nets, lighting and in-ice logos in their backyard in Portugal Cove - St. Philip's. Todd started this rink project as a fundraiser to raise money for charities associated with the medical conditions of their youngest son, Carter. Carter was born in 2011, and has been diagnosed with cerebral palsy and is profoundly deaf. You can read Carter's story HERE.


Todd says, "My wife and I became very aggressive in fundraising for the charities that are associated with his conditions. We feel that by supporting those charities, we are supporting him and we're not just being passive. We want to be a very active partner in the community and help children like him and do as much as we can for them."

The Reason for the Rink project benefits the following charities: Easter Seals NL, Rainbow Riders - Therapeutic Riding Newfoundland and Labrador Inc., Mazol Shriners, and the Cerebral Palsy Association of Newfoundland and Labrador.

To date, the Reason for the Rink has raised over $100,000.00 for these local charities. Absolutely incredible.

NTV featured a story on the Reason for the Rink in 2013, when Mark Dwyer captured the experience at the rink's first charity game. This feature was named the RTDNA's top sports story for Atlantic Canada in 2013. Click here to view - http://ntv.ca/on-the-mark-reason-for-the-rink/

This past weekend, I was invited to attend the Grand Opening of this season's Reason for the Rink. This was a private event for the sponsors and their families and representatives from each of the supported charities. Also in attendance for the day's Grand Opening was Gavin Will, deputy mayor of Portugal Cove - St. Philip's.


Though it was very cold, the sun was shining and it was a beautiful day on the rink! This was our first opportunity to get Brennen out on the ice in his new sled, and he loved it! I think we will be frequent visitors to the rink this year!

Members of the Cerebral Palsy Association of NL at the Grand Opening of the Reason for the Rink

Todd Churchill with representatives from the four supported charities.

Thank you so much to both Kim and Todd Churchill. This rink project is an enormous undertaking, and you have done an incredible job. We can't thank you enough for your continued support of local charities. You truly are making a difference in the lives of individuals with disabilities and their families.

Visit  http://www.reasonfortherink.com/ for more information, and click on the Rink Cam - Live for 24 / 7 live coverage of the rink!

Saturday, January 10, 2015

Tulip Tales: Keeley

I am excited to share this first 'Tulip Tale' of 2015! I couldn't think of a better way to kick off the New Year than with this precious little girl named Keeley. Her mother, Dominique shares her story.

*****

I have a 3 year old daughter named Keeley, who has multiple disabilities and health set backs. She has recently undergone another urgent surgery to install a pacemaker (her 8th time under anesthetic).

Keeley was born in Fort McMurray. When I was pregnant, my placenta calcified, causing her to have asymmetrical growth restriction. Her growth had declined about 2 months prior to being delivered, and at 38 weeks, she was born by emergency c-section. She had a few complications at birth, but nobody was overly concerned. I had been told over and over she was just "gassy" until one doctor thought maybe there was something more going on, as it was unusual for a 5 pound baby to look like she swallowed a basketball! This doctor thought it could be Hirschprung's disease and anal stenosis (a narrowing of the anal canal), as well as protein colitis. It was determined that Keeley's body was unable to digest any proteins, and she was switched to a special pre-digested formula called Neocate).

She was airlifted to Edmonton, where a surgeon examined her. She put a Q-tip in her bum, ripped her open and rudely told me "Well, how big do they expect it to be?"  We were sent away with no answers. I went back and forth to this doctor's office every day trying to figure out why my little girl was so sick and why nobody would help us!  It got to the point where the doctor told us to fly anywhere in the world and maybe someone will help, as she expected that Keeley would be lucky to live another 3 days! So with that, off to Newfoundland we went.


On July 10, 2011 we arrived in St. John's and Keeley was admitted to the NICU at the Janeway. Here, she was diagnosed with possible protein colitis, pyloric stenosis (the muscle that connects the stomach to the intestine had closed shut, and she had essentially been starving to death for 2 months), anal stenosis (what was going in couldn't come out as she had such a small opening), and bifid thumb (2 thumbs on one hand).


A few surgeries later, it seemed like we were getting some of this under control, only to realize that things were still not the greatest. As the months go by and many stories in between, we have discovered some more issues, including 3 spinal defects, 2 heart defects (soon to be 3 as we would find out), breath holding spells, possible seizures, hypoglycemia (discovered when we couldn't wake her up and her sugars were below 1), neuronal intestinal dysplasia and zero motility and mega colon (Keeley's body essentially has no idea that it has a large intestine). Every 2 days we insert a catheter and inflate a balloon and let a feeding bag and saline go through and work for her, however these are becoming unsuccessful and she now needs another surgery to correct the intestinal problem.


We also found out on Christmas morning that Keeley's heart keeps stopping (called sinus node heart pauses). On December 19th, 2014 she had a Medtronic Heart Loop Recorder surgically implanted, to help determine and diagnose her cardiovascular issues. This implant monitors and records the heart rate and rhythm and doctors could analyze the stored information. On December 22, I thought that everything was fine and booked tickets for myself and Keeley to go to Fort McMurray to spend Christmas with my grandparents. It would be my first time spending Christmas with them in over a decade and Keeley's first time ever. We were excited and not thinking anything would go wrong. At 8:00 am on Christmas morning, I got a call from the cardiologist saying that he had received an email and text notification from Keeley's heart implant, and it looked like her heart was stopping.

We changed our tickets and raced back in to the Janeway. The doctors were questioning whether or not it was a rare type of seizure that was making her heart stop. We came back to the hospital again on the Sunday after Christmas for what we thought was to have stitches removed from her previous surgery and to meet with the neurology team, only to be rushed to the PICU and two days later, Keeley had a pacemaker implanted.


The next thing in store for Keeley will be more extensive testing to determine what is the best thing to do for her intestines. We know she has intestinal neuronal dysplasia, but are not sure if that is the full extent of the issue. She may require a colostomy, a cecostomy, or a colon resection, but she will require a lot of testing before either of these can take place.


Keeley has a lot of issues and needs quite a bit of extra care. She is a happy and active kid and loves preschool, however the idea of sending her to a regular school is terrifying to me. I believe that she would benefit from being in a school for medically fragile children with doctors and nurses on site. Newfoundland doesn't have options like this, so we are moving her to a bigger facility in Calgary (Alberta Children's Hospital) to a special school connected with the hospital so she can still be a normal kid and have people around when we are not - people who are trained to notice when things aren't quite right!


As a single mom of a sick little girl, we don't have a lot to work with. I am in the process of selling everything I own to make this happen for Keeley! My only wish is for my child to be happy and healthy and live a normal life like other kids her age.

*****

Dominique, thank you so much for sharing Keeley's story. It is heart-wrenching to think of all that she has been through in such a short time. What a strong little girl, and she is just the cutest! She is very lucky to have such a caring, loving Mom who wants only the very best for her. I wish you both nothing but health and happiness, and I hope that Keeley continues to thrive. With you looking out for her, she's got an incredible advantage! Here's to a Happy, Happy New Year!


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

Thursday, January 8, 2015

F-words video competition

Just a quick post today to ask for your support.

A while back, I wrote about how I was asked to be part of a research team through CanChild Centre for Childhood Disability Research (see this post HERE)

The research is based on Dr. Peter Rosenbaum's "F-words in Childhood Disability", the 'F-words' being function, family, fitness, fun, friends and future. Our goal will be to address the knowledge needs of families with children with disabilities and to support the uptake of the 'F-words' concepts in children's health care.

You will see me writing more about this study, and my role on the research team in the coming months. Right now, we need your help.

A video was created to bring awareness to the 'F-words'. That video has been entered into the CIHR Institute of Human Development, Child and Youth Health (IHDCYH) Talks Video Competition, and is now in the running to access funding for our research. We just need to get a few more 'likes' by the end of today!!

If you could, please go to the video here - https://www.youtube.com/watch?v=bevsBA3JxNw
watch the video, and LIKE it. (You need a Gmail or YouTube account to vote).

Voting ends tonight - January 8th, 2015 at 8pm EST.

On behalf of the 'F-words' in Childhood Disability Research Team, we greatly appreciate your time and support! Thank you!!

Monday, January 5, 2015

Koala Crate: Safari

The Kiwi Crate company was founded on the vision of inspiring kids' creativity. Originally designed for children ages 4-8, they have recently added three new lines to their subscription family!



Koala Crate encourages play-based learning for kids between the ages of 3 and 4.
Tinker Crate encourages hands-on learning and experimentation in science and engineering for kids between 9 to 14+.
Doodle Crate builds confidence and creativity in kids between the ages of 9 to 16+.

The projects in Koala Crate include play-and-learn activities that are designed to engage the natural curiosity and creativity among young ones. While the recommended age range is 3-4, I felt that this kit would be the most developmentally appropriate for Brennen.

Each month’s Koala Crate includes all of the materials and inspiration for fun projects related to that month’s theme, as well as imagine! magazine, created in partnership with Highlights for Children.

I loved Highlights magazine as a kid - I remember searching for the 'Hidden Pictures' in every issue, and finding all of the funny things in the 'What's Wrong' photo on each back cover. It was the first magazine subscription I ever had in my name, and I will never forget the excitement of receiving that mail as a child. I loved it then, and I am so excited to get to experience it again now as a Mom!

Our first Koala Crate arrived, addressed to Brennen, just last week!


This month's theme was Safari, and the box contained all of the materials needed to make your own animal kingdom! This kit was super cute and a lot of fun to explore! It comes with the faces, bellies and bodies to make five different hand puppets: a lion, crocodile, giraffe, elephant and zebra. In the included Instructions & Inspiration for the Grownup Assistant, there are a number of ideas to extend the play, such as creating a puppet theater or stage and putting on a show for family and friends. They also ask questions, like "How do the bellies feel? How are they different from each other?"

The textures of the animal bellies provide a great tactile experience. Brennen loved the feel of the lion's fur and the elephant's leathery skin. The puppets are cute and whimsical, but also have a realistic aspect. I really love them and I think we will use them a lot.







In addition to the hand puppets, this kit also included animal matching cards. You can match each animal head with the right body, or mix up the heads and bodies to make silly animals. The matching cards are super thick and durable so they will last a long time. I just adore them.

Making things with Brennen is a way for us to enjoy quality time together. This Koala Crate provided a unique way to introduce colours and textures, shapes and patterns in an activity that is both educational and fun. I would totally recommend it for any child, regardless of age or level of ability. 



Visit www.kiwicrate.com/ to learn more about their monthly packages that encourage hands-on learning and fun!

Thursday, January 1, 2015

And a Happy New Year!

2014. What a year it’s been!

Thank you to everyone who has been a part of my life this past year. Thank you for your continued support and encouragement, and for believing in the power of shared stories and the written word. Thank you for being on this journey with me. Happiness is best when shared, and I am happy to share mine with all of you!

In my first year of blogging, I have featured the stories of 14 incredible children in my 'Tulip Tales' series, and have already posted updates on two of them. In sharing your stories, many of you have expressed admirable honesty in the fact that it can be a struggle to find peace, happiness, and the "good" amid the challenges of raising a child with special needs. I have been touched by your willingness to share such personal stories, and I admire your courage. These 'Tulip Tales' usually make me smile and cry all at once, and inwardly breathe a sigh of relief that there are lots of moms who have the same feelings I do. I have been inspired and educated by doing this series, as I know others have as well. My goal is to continue reaching out to families and featuring the stories of remarkable children who have so much to teach us.

2014 was beautiful and life changing, but a new year brings new beginnings. I look at my shiny new agenda with 2015 embossed on the cover. These blank pages hold so much possibility and I am excited by the opportunity to embrace new challenges and experience more growth.

I feel blessed and content and happy to be sharing my story with those who want to listen.

I am grateful for all of the amazing moments this year gave me. Here is a look back at some of my favourite little moments from 2014:


2014 will be hard to beat, but I think 2015 is up for the challenge!
I wish a very Happy New Year to all of you! Love, Julie