I Heart Hoop Class!

On Thursday evenings, I go to a Hoop Fitness class. Yep.. hula hooping.. for fitness! As Cindy likes to say, "Hoop Fitness is a total body workout disguised as fun!"

Cindy Butt is the brains and body behind FarOut Fitness. She has developed her own Hoop Fitness curriculum as a cardio and conditioning workout that allows for hoopers of different fitness levels to come together and hoop at their own pace.

Cindy offers a variety of fun ways to get fit and stay in shape. In addition to Hoop Fitness, she teaches Zumba and Kettlebell classes, and offers nutrition and wellness programs to keep you healthy! Cindy is motivational and inspiring. She believes in facing fears and taking action to make a difference.
Our Hoop Fit class has evolved over the years. We have added tricks, upped the ante, we've had guest-hosted workshops, incorporated Yoga and Salsa moves, but one thing has remained.. Cindy's high energy and the passion with which she teaches is a constant. 

We hoop outside..

We hoop in the dark..

We hoop with fire! (yes, I actually did this!)

I recently wrote an article for FarOut Fitness, which is now in their newsletter (the Hoopla!).
You can read it here - Love & Miracles

I'm so glad it's Thursday!!

Kids Who Can

Easter Seals is dedicated to enhancing the quality of life of individuals with physical disabilities.  Every Summer, since Brennen was just two years old, I have taken him to Easter Seals Family Camp (Camp Bumbleberry) at the beautiful Lavrock facility on the Salmonier Line.  He always has an awesome time at camp, and we look forward to it each and every year.  It is a wonderful opportunity for Brennen to get together with his friends, enjoy the outdoors, and take part in some super-fun activities that are not available (or accessible) elsewhere.  At camp we run our toes through the grass as we relax by the water, we swim, we go out on canoe rides, we take part in a scavenger hunt, enjoy a bbq and campfire.. we sing songs, tell stories, make new friends and create memories that will last a lifetime.

At Easter Seals, you will see children who have been diagnosed with Spina Bifida, Cerebral Palsy, Muscular Dystrophy, and other debilitating conditions, but you won’t see that defining them. The moment you see the joy that is so often glued to their faces, it’s hard to even see their disability. Instead, you will see the truth behind each and every of one their successes, and the strength with which they persevere.

In 2011, Photosensitive partnered with Easter Seals camps across Canada to produce Kids Who Can, a black and white photo and video project sponsored by Canon.  Photographers and videographers visited twelve Easter Seals camps across the country in Newfoundland, Nova Scotia, New Brunswick, Quebec, Ontario, Saskatchewan, Alberta and British Columbia. The images were officially launched in an exhibit that toured the country in 2012.  An exhibition of kids who truly can.

The following are some of my favourite images from the collection (the first two of my own family, captured by photographer Greg Locke).

There were some amazing videos produced from the various camps across the country. Click on the links below to watch the videos from our province!

*  http://photosensitive.com/eastersealskids/video/index.php?id=28
*  http://photosensitive.com/eastersealskids/video/index.php?id=30

Please visit the gallery to view the other photos and videos from the exhibit.  You won't be disappointed!

Snoezelen Room

We have a Snoezelen Room in our home.  A Snoezelen Room is a multi-sensory environment, full of sights, sounds, textures and movement designed to provide stimulation and relaxation in a safe and controlled space .  You can read more HERE.

Most of the items in our Snoezelen Room were ordered from a company called Special Needs Toys.
They are a Canadian company, and are "providers of carefully selected fun products designed to help you or those in your care enjoy life, and achieve more."

Brennen loves the giant interactive bubble tube, and the fiber-optic lights. The bubble column is 2 meters tall and extra wide.  You can control the colours of the tube by pressing the coloured switch buttons.  The fiber-optic light strands change colour and sparkle on their own. 

 We were pleasantly surprised recently to find out that Brennen is in two photos on the cover of their new catalogue for 2014!  

This photo is of Brennen and his Poppy, trying out his new Senseez vibrating pillow!  He loves it!  And we love anything that makes him happy!

Tulip Tales: Bella

I am very excited to publish my second installment of ‘Tulip Tales’!

Baby Bella came into the world on March 14, 2013 with a poor prognosis. With the exception of seizure activity, she showed a flatline EEG and Neurologists said recovery was unlikely.  Her mother, Lisa, shares her story.

*****

I had a normal, healthy pregnancy. I’ve always eaten extremely well, and taken care of myself. I worked out, avoided coffee and sugar.  I was obsessive about it, I’ll admit. I had three ultrasounds, with the last being at around 32 weeks. All supposedly normal. 

I went into labour at 2:00 pm on March 13, 2013. Upon arrival at the hospital, it was concluded that I was only 3 cm dilated, so I was sent to the obstetrics ward to prelabour until I was 6-7 cm, then went back to the caseroom to deliver.  I started pushing at around midnight. I pushed for a long time. The doctor used the vacuum at one point with no success. The baby was stuck on my pelvic bone. There were two occasions I remember them noting that her heart rate was dropping, so they had me roll onto my side, which fixed it immediately. No one seemed worried, so nor did I.  When she finally arrived, at 3:41am, March 14th, they whisked her immediately to the cot. We waited for her to cry. There was nothing. My mom has all of this on video. It still pains me to watch. We held each others hand as one doctor stitched me, and a half-dozen others surrounded her cot. No one was speaking. They then took her out of the room, but no one explained to us what was happening.  We tried hard to remain calm and optimistic. Denial can be a beautiful thing. 

They brought her to me about 45 minutes later (also on video). They handed her to me without warning me that she looked different. Her face and head where misshapen; microcephaly (her head was small, in the zero percentile), eyes spaced far apart, midface sunken, lacking brow bones. It was a heartbreaking moment. One I find hard to watch, yet I can’t bring myself to erase it. They told us she was having seizures, apnea, and likely had a syndromic case of craniosynostosis. They were not sure of the extent of damage to her brain, so they were going to do an EEG and CT scan.

I lost my mind, basically. I’m usually a happy, quiet, calm person, but I was devastated.  I remember repeating “I want to wake up. This can’t be real”.  And I apologized to my husband for failing to give him a healthy child. My husband, I might add, was insanely stoic. He was so strong for me, but his heart was broken as well. The nurses gave me something to relax and sent me up to obstetrics. I cried until I passed out. I slept for maybe two hours, then got up and started researching until visiting hours commenced in NICU. When we googled craniosynostosis, we learned that there were surgeries that might be able to correct it. We decided “we got this”. We knew we could handle it, but we were terrified of what that morning’s EEG would show. I’m not religious, but damn it, we prayed. 

We were approached by a neurologist and two other people (can’t remember who they introduced themselves as). Our neurologist delivered the news quickly, emotionlessly, but tactfully. Bella’s EEG was a complete flatline with the exception of some seizure activity.  I remember asking what the chance of recovery was, and his response echoes inside my mind to this day. “Highly unlikely“. My husband and I were shocked. 
 

Calm and methodically, it was then that we discussed whether we would keep her on life support despite her poor prognosis. We decided together that if she was capable of feeling happiness, we would do everything in our power to make her life as full and wonderful as possible. We then called our parents and broke the news to them. I remember there being tears, but there was also an eerie sense of calm. Again, denial can be a beautiful thing.

Bella was kept on intubation and an NG tube for the first few weeks. We stimulated her every chance we got. We didn’t miss a second with her. (Her grandparents as well. We all took turns).  As the weeks unfolded, her breathing improved and the intubation tube came out.  A few weeks later the NG tube was removed. Several EEGs were run over those first few weeks, each showing improvement over the last. An MRI was done at The Hospital for Sick Children in Toronto in October. It showed no legions relating to damage. 

Bella has hit all of her milestones until this recent screening. At ten months, she is not clapping, pulling herself up to sit or stand, crawl, nor does she pass an object from hand to hand. I am not overly worried yet though. It’s still early.  The bottom line is, she is doing insanely awesome!  We are so blessed. So thankful. 

Bella has a long road ahead.  She has been diagnosed with a rare syndrome called Frontonasal Dysplasia. A minimum of four operations are in her near future; the first, a cranial vault distraction, to increase the volume of her skull to accommodate a growing brain (my husband and I will turn screws attached to hinges in her skull over the course of 6-8 weeks to increase its circumference). Then she will have a forehead remodel, a fronto-orbital advancement and the creation of brow bones, and a nasal bridge augmentation. All procedures will be repeated as required as she grows. 
 

No one can ever prepare you for something like this. But we continue putting one foot in front of the other.  Every minute of every day. We derive strength from her smiles, her contentment, and the love in her eyes.  Thank God for the little blessings. 

*****

I want to thank Lisa for sharing sweet Bella with us.  When I asked if she was comfortable sharing such a personal experience, Lisa said, “If even one mother out there whose child is given a terrible prognosis can derive some hope from this, it will be well worth it.”  

You are a true inspiration, Lisa.  We wish you and your family all the best in the coming months, and we look forward to an update on Bella after her surgeries.  Love to you all.

* The financial cost of unexpected medical issues, and the related travel expenses can be an enormous burden to any family.  To donate to Bella’s Journey, please do so HERE.

*UPDATE - Bella has been featured on Global News. You can view the story and video here - http://globalnews.ca/news/1383020/sick-kids-doctors-treat-baby-with-rare-skull-condition/

 *****

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

Hip Surgery

This past Summer was a rough one for us. On July 25th, Brennen had a pelvic and femoral osteotomy to correct a dislocated hip.

We were prepared for the surgery. We knew it was coming. We had put it off as long as possible, keeping an eye on his left hip, doing x-rays every six months. At first, they called it a "hip at risk". It looked like it was slipping out of place. It stayed that way for several months, would slip a little more, and would hold still for a few more months. On his last set of x-rays, the hip looked to be out even further, so it was clear that it had to be corrected. It was a difficult decision, because it didn't seem to be affecting Brennen. He wasn't having any discomfort, and wasn't showing any signs of distress when his legs were moved and stretched. I found it hard to rationalize putting his little body through such a big surgery and long recovery process, when (outwardly) he seemed fine. It was explained to me that a dislocated hip could affect other parts of his body, ie. his spine and alignment, thereby affecting his internal organs, so it was a clear choice. Do less harm.

The day of the surgery was a long one. It was delayed by a few hours, so they were late getting started, and the waiting is always the hardest part. Thankfully, we were able to wait in the little family room just outside the PICU, so we had our own space to settle in and get comfortable.
Brennen had a pelvic and femoral osteotomy. If you'd like to read the gory details, you can do so HERE.

When the surgery was complete, Brennen was taken to the PICU, where he was monitored closely.  He was sedated and on a lot of medication for pain, but he seemed to be resting comfortably.

The next day, Brennen was moved out of the ICU and into Constant Care, where we stayed for the next six days.  

Brennen was an absolute superstar through the whole process. Look at this smile, just four days post-op!

He was in a bright orange hip spica cast, which went from his chest (just under his armpits) down to his toes on one leg, and to his knee on the other. Positioning was going to be an issue!

 For now, we were able to keep him content and occupied with movies and lots of visitors!

*Note the sign above his bed - "Startling patient and loud noises may cause seizure. Please be careful!"

After a week in the hospital, we were happy to go home. It was going to be a whole new set of challenges trying to adjust to life in a body cast, but we were ready.. and Brennen was awesome!

We even got outside a little bit!

Brennen was so amazing. Seven weeks in a body cast, and he didn't even fuss. He is stronger than I had imagined. We had ourselves prepared for the absolute worst.. muscle spasms, crying, pain, no sleep.. but that was not the case!

I've said it before, and I will say it again.. Brennen is a superstar. I wish I was more like him.

I've posted this today because we know a family with a little one who is preparing to have the same surgery. You guys are strong, and will get through it just as we did. Our children are resilient. They are capable of so much, we just need to give them the opportunity to show us!
Our thoughts are with you guys!  xo

3E Love

I am proud to be a strong supporter and advocate of 3E Love.  

3E Love is a social entrepreneurial movement to change the perception of disability.
The company was started in 2007 by siblings Annie & Stevie Hopkins, both born with Spinal Muscular Atrophy Type 2. The company’s trademarked “International Symbol of Acceptance” (wheelchair heart logo) is the drive behind its social mission to provide the tools for others to embrace diversity, educate society, and empower each other to love life. The symbol represents real people and real life instead of perceptions and stereotypes. 3E Love is about loving and living life to the fullest no matter what you can or cannot do.

3E Love's founder and creator, Annie Hopkins was an advocate, entrepreneur, artist, and student, and she demonstrated what is possible when you love life. She created 3E Love with the idea that the wheelchair heart symbol would unify people of all abilities and ignite conversations every day that would help change attitudes for the better.

Since Annie's passing in 2009, 3E Love and the 'Wheelchair Heart' has become an international brand and symbol of love, strength, and hope. Her brother, Stevie, has taken her idea and continued on with their plan to spread the symbol and accompanying message worldwide. He has turned her dream into a reality, and has worked tirelessly to spread the symbol across the globe.

January 20th, 2014 is the 5th Annual International Day of Acceptance!

Over at Little Tulips, we are celebrating this day by wearing our hearts on our sleeve and proudly demonstrating our acceptance of others.   
Diversity is the one true thing we all have in common and we celebrate that every day!

If you would like to show your support, you can do so HERE!  

We have t-shirts available in a variety of styles and colours, and proceeds go towards our program for children with special needs!

Embrace diversity. Educate your community. Empower each other. Love life."
- 3E Love Founder, Annie Hopkins (1984-2009)

 

The value of a good family photo

I take a lot of pictures. Pictures of Brennen, pictures of Andrew, pictures of Brennen & Andrew together, pictures of our dog, Rumble. I had begun to notice that there really weren't many 'decent' photos of the three (or four) of us together, and that, to me, was unacceptable. So, last November, I booked a photo session with local photographer and our friendly neighbour, Jim Mullowney. He was awesome to work with, and very understanding to our somewhat unique needs. We chose a location that held meaning for us (my parents' backyard!) and headed out for a quick late-afternoon shoot. We couldn't be happier with the results, and we will definitely be doing this again! Thanks, Jimmy!

"Being a family means you are a part of something very wonderful. It means you will love and be loved for the rest of your life." - Lisa Weedn

This last photo made it onto our Christmas card!  xo
http://littletulipsfamilychildcare.com/2013/12/19/from-our-family-to-yours/