Sleep Study

Brennen spent the night at 'Hotel Janeway' last night to undergo a planned sleep study. We have been suspecting that he has some sort of obstructive sleep apnea, because his breathing in the nighttime is not ideal. For the past few months, Brennen has been struggling to breathe while he sleeps, and it has been very concerning for Andrew and I. We reposition him many times throughout the night, and have been taking turns sleeping with him to make sure that he continues breathing. It is a constant worry. We saw an ENT, who recommended this sleep study in order to properly diagnose whatever might be going on with him.

There wasn't a lot of sleep happening throughout the study. Brennen wasn't fond of having the nasal prongs in his nose, but they were necessary to monitor his breathing. He couldn't get comfortable on his back, as he is used to sleeping on his belly, but he did manage to doze off for a couple of hours. Hopefully that will be enough for them to get some sort of reading to tell us what exactly is happening with his airway during the night.

We are fortunate that Brennen has been really well, medically, for the past few years. He hasn't had any illnesses or major procedures since his back surgery in 2017. He has been really happy and comfortable and we have had no real concerns until recently, when he started this unusual breathing at night. He is noisy and it sounds like he is snoring, but there are times that he really struggles to get a full breath. He has been tired during the day because he is not getting a good quality of sleep during the night, and this is not normal for him. We are anxious to get him back to a place where he can get a full nights sleep without these disordered breathing events.

Sleep is important for everyone and plays a major role in overall good health and well-being. We all know that we feel better after a full nights sleep, and though sometimes as parents we have to learn to function on broken sleep, it is not the ideal situation. Brennen's little body needs sleep to support healthy brain function and to maintain his physical health. Hopefully we are on track to get him back to his body's optimal condition. We haven't received the results from this sleep study yet, but our fingers are crossed that we will have answers soon.

If you guys have any experience with sleep disorders or sleep apnea, I would love to hear from you!

Finger Puppets for the Janeway

Are you guys aware of the incredible thing that is happening right here in Newfoundland and Labrador right now? No, not the icebergs, though they are lovely.. I'm talking about something a little more personal. There are people - knitters - coming out of the woodwork to help put a smile on the faces of the children of our province.

On May 9th, Denika Philpott saw a Facebook post saying that the Janeway was running out of finger puppets, and it struck a chord with her. Denika told me that she remembers visiting the Janeway numerous times with her own young children, not for anything serious, but her daughter, Abigail had to have bloodwork done quite often and every time she left she would leave with a finger puppet, and she would dry her tears and that would be the highlight of her day. She said that the thought that a child might have to go to the Janeway for bloodwork or some other procedure, and not get to have that little treat really bothered her, and so she decided to do something about it.

Denika started public a Facebook group called 'Knitted Finger Puppets for the Janeway', and it has grown to include almost 1000 people, all eager to donate their time to such a wonderful project. It is such a positive group, with people sharing patterns and offering help to those who might not be seasoned knitters. It is amazing to see how creative some people can be with such a small canvas to work with. There are pictures of finger puppets in the shape of unicorns, sock monkeys, ninja turtles, you name it! There are photos posted daily of the batches of tiny puppets that people are ready to donate. My favourite photo so far was of a bag stuffed with finger puppets with a note attached that said, "Emma Wells, 97 years old, 175 finger puppets, original pattern since 1982". Amazing.

Denika has been so impressed that people are taking it upon themselves to deliver the finger puppets to the Janeway, and they are even checking with other hospitals around the province to see who might be able to use them. She says it really shows the true hearts of Newfoundlanders and Labradorians - people pitching in to help others.

The group has now expanded to include people knitting preemie hats, and booties for the Janeway as well. There are photos of tiny babies, with captions like, "My granddaughter was born December 9, 2018, 10 weeks early weighing 2 pounds 6 oz. These hats are what kept her little head warm while she was in the incubator." If  that doesn't pull on your heart-strings, I don't know what will!

I have visited the blood collection department with Brennen many times over the years, and he always leaves with a puppet covering his bandage, and a smile on his face. Like Denika, I can't imagine not having that little token of kindness to go home with. It's something so small, but it can really brighten your day and put a positive spin on something that can otherwise be quite scary for young children (and their Mommas!)

We invited some of our favourite kiddos over on the weekend (my niece and nephew), and they had a great time playing with the finger puppets that Nanny made! We look forward to bringing these in to the Janeway this week!

I am a sucker for a good-news story, especially when it comes to children in the hospital, and I commend these knitters (including my own Mom!) for putting the time in to help put a smile on the faces of some very special kiddos. Thank you, thank you!!

Send Happiness Project

You might remember my post last year about Petit Mail - a kids story postcard subscription created right here in Newfoundland by local mom and entrepreneur, Alison Butler. Brennen and I loved receiving the postcards in our home mailbox, and we had lots of fun together exploring the activities that the cards suggested.

Brennen is a fun kid. He has changed the lives of everyone in our family. We were not expecting his disability when he was born thirteen years ago, but because of it, I have learned so much about myself, the world around us and what really matters.

Brennen has been doing really well lately, and we are fortunate to be able to enjoy these fun activities at home, but part of raising a child with a disability means that we spend quite a lot of time in the hospital. In recent years, we have spent more time than I would like to count admitted to the Janeway for one medical procedure or another. Brennen has had several major surgeries (like this one) that have found us living in the hospital for days that turn into weeks that turn into months. It is part of our life, and one that we have come to accept, but it never, ever gets easier.

Being 'frequent fliers' of our local children's hospital means that we have gotten to meet some truly remarkable families, each facing their own set of healthcare challenges. We know families who have children with complex disabilities and medical conditions, children with cancer, and other life-threatening illnesses. We know children who go through some of the hardest situations imaginable, and they do it with a kind of resiliency and strength that I've never seen before. These children clench their teeth through countless blood draws and examinations, and they withstand treatments and procedures that would make the best of us weak. These kids are tough but vulnerable and they have touched my life in a truly profound way.

Wanting to give back, Alison recognizes that there are many children in our community who could use a pick-me-up, and has created the Send Happiness Project -  delivering snail mail to children who might need an extra smile in their day!

Brennen and I will be personally helping to deliver these special cards, and every purchase will be matched with a donation (1 purchased = 1 donated).

Our goal is to brighten the days of 500 children in 2019!

I'm going to be honest with you. Brennen and I were planning to deliver a postcard to our dear friend Kaiden Little this week, but his mom wrote me on Monday afternoon to let me know that he'd passed peacefully away. Our hearts are broken for his family. Kaiden was a true warrior. He had been diagnosed with Neuroblastoma at the age of three, and he fought hard like a true super hero right to the end. Kaiden was six years old.

There are so many children in our local children's hospital who could use a smile today. If I have learned anything from having a child with a disability, it is that more than anything, these children need love. They need to know that they are valued, they matter, and that people (many people!) care about them.

Purchase a “Send Happiness Project” story postcard or letter and we will deliver a Petit Mail story to a child, in person, to brighten their day!

Janeway Imagine Squad

Anyone who knows my family knows that we spend a great deal of time at the Janeway. With Brennen's surgeries (see HERE and HERE), regular therapy sessions and specialist appointments (in addition to caring for other children who have significant medical needs), we have become frequent fliers of our local children's hospital.

I have written many times about our connection to the Janeway (ie. HERE and HERE), and am always happy to share our experiences and to give thanks to the wonderful medical staff who have cared so well for my family. 

A couple of months ago, I received a lovely phone call from our dear friends at the Janeway Children's Hospital Foundation, asking if Brennen would be interested in being part of the Janeway Imagine Squad.

Of course, we said YES! 

The Imagine Squad aims to highlight the power of imagination, and features several Janeway kids pretending to interact with their imagination, represented through illustrations that were added to the photos afterwards. I was so excited when we got the call! I know how creative young minds can be, and how their curiosity drives them to explore their world and learn about everything around them. This creativity can be dampened when children are sick, or must spend endless days in a hospital bed. Every child's imagination needs to be stimulated, and when children are unwell or are going through a tough time, the bad stuff needs to be balanced with good experiences and positive images so that they can escape in their minds into a fascinating alternative world. The ability to move from reality to fantasy and back again comes easy to children, and this ability to lose yourself into another world is an asset when the real world can be difficult or depressing.

Sara Rostotski was the official photographer for this campaign and the creative team at The Idea Factory brought the images to life!

Many of the photos taken during this shoot will assist in building awareness of how important the Janeway Children's Health and Rehabilitation Hospital is to all of our province's children.

Here is Brennen, imagining himself floating through outer space - weightless and free from the constraints of his wheelchair. There is no pressure on his body or pain in his joints from continuous sitting. He is ready for all sorts of fun space adventures!

Adorable Asha and Kaleb are also part of the Imagine Squad. Each child has their own Janeway story and we are excited for you to see them in the coming weeks leading up to the Telethon.

Keep an eye out for these images on billboards and in print media around town, and make sure you tune in to the Telethon on June 2nd and 3rd to witness the real impact the Janeway has on the lives of so many children in our province. Just imagine what your donations can do!

The Wyatt's Stars Story

The Janeway Children's Hospital is very close to my heart, and I know that it is near and dear to many of you who read this blog as well. Last year, while doing my Christmas shopping, I discovered Wyatt's Stars ornaments - a fundraiser for the Janeway, and a beautiful memorial to a precious baby boy. I started my collection then, excited to add another meaningful decoration to our tree - a tree that already holds so many beautiful memories. Nestled between layers of wooden beads and strings of white lights are reminders of places and people and magical moments that we never want to forget. I didn't know Wyatt or his family, but I knew that his stars belonged on our tree.

Wyatt's father, Jimmy shares The Wyatt's Stars Story below:

The Wyatt’s Stars Story

Five years sounds like such a long time. When you begin something, when you build a plan that reaches that far, what you’re really doing is taking the first step in a journey with only a dream for a destination. You have a vague idea of where you want to be and a fragile web of thoughts and hopes and maybes that might get you there. What you do not have is any true idea, for all your vision, where the journey will really take you. The by-ways, the sidetracks, the roundabouts, all the million moments between here and there and everything they can contain.

As we move into the fifth and final year of the Wyatt’s Stars Project, I feel the undeniable pull of the path we’ve taken and I cannot help but look back, through all that it has been and where it all began.

Wyatt James Lane was our Little Star, from the moment he burst into our lives – early, in distress, and in the midst of an already turbulent time of grief and change in our family. His arrival was a flurry of cold, bright fear, desperate, furious, frenetic activity and an inconceivable blending of heartache and hope, despair and determination.

He was a fighter from the start. We could do little but sit by and watch as he struggled, survived and conquered. We brought him home, amidst even more family grief and turmoil. He was our bright spot, silver and shining and hopeful, the Little Star of our unimaginable confluence of dark and scary stories. He was our happy ending.

Or so we believed, I believed.

It was not to be. We spent two months in blissful ignorance, trying to accept - to come to terms - with all that had happened, to learn to heal. We spent another 2 months in willful denial – me more than anyone else – before Wyatt ended up at the Janeway Children’s Hospital in St. John’s again.

His home for the first three weeks of his life once again became his home. Again, we found ourselves sitting by, in that same twilight of powerless uncertainty, able to do nothing but watch as he fought for his life under the dedicated, devoted care of his expert medical team.

It is strange to use the word brave for one so little, so young, but it is one of the words that everyone had for Wyatt. Throughout all his struggles, his bright, ever-present smile captivated and buoyed the hearts of everyone who met him. His medical team, hospital staff, volunteers and visitors all commented on his strength, his joyous perseverance and the hope they had for him.

It was a hope we all shared but Wyatt, our Little Star, was sicker than anyone knew. On December 17th 2012, a week before Christmas, after 33 days at the Janeway, he passed away. He was six months old.

Our Little Star’s light had burned out, our happy ending gone. Our family, near and far, was shattered, and our community mourned with us, as did his Janeway team. For such a little boy, in such a short time, he had touched many lives and found a home in many hearts.

The days, weeks and months following were a blur of grief-stricken survival. Putting one foot in front of the other, doing the bare minimum needed to get by, to get our older twin boys through, to figure out what life was supposed to be now.

In June of 2013, Yvonne and I were watching the Janeway Telethon. It was an emotional experience. The Janeway would always be a part of us from now on, and the Telethon had a very special association for us. Wyatt’s first days at the Janeway had been during the running of the 2012 Telethon, when it had still been held at the hospital itself. It was running when Yvonne first arrived from Corner Brook after Wyatt had been air lifted to St. John’s. During her first visit to see him, we passed through the backstage area to get to the elevator that would take us to the Neonatal Intensive Care Unit.

We sat and we watched. We saw children and families going through ordeals like we, ourselves, had. We saw people celebrate the wonders that the Janeway had worked, and others return to remember those children that they had lost. We felt for all of them and we felt our own loss even more.

Wyatt had been with us for such a short time. The pain of his absence was unbearable and it was matched by the rapid-growing fear that, outside our immediate family, he would be forgotten.

We needed something. A way to remember him, to help others remember that he was here. He was ours and he was real and he made an immeasurable impact on our lives. We needed something to do with all that love and energy that was supposed to be his.

It was then that we decided that we had to do something. A project of some sort for the Janeway. An effort, in honour and memory of Wyatt, that could help other children receive the same excellence in care, the same gentle thoughtfulness and compassion that he did. That other families could be afforded the same hope we had, and maybe, just maybe, a better outcome.

That’s where it all started. That spark was all we needed. The idea came together quickly, from his story, our circumstances and one of our own traditions.

Every year, Yvonne and I bought a special ornament for our Christmas tree and marked it with the year. It was always something significant for us for that year, with elements, shapes and symbols that meant something to us. Wyatt – our Little Star – had passed so close to Christmas that the choice was clear. A Christmas ornament that included stars and other components that spoke to his story. Something that could be a fundraiser for the Janeway and a tangible memorial to Wyatt.

From there, the Wyatt’s Stars project was born. Not a one time effort – our grief, our love, needed more than that. We settled on a 5-year project. A plan for a series of five ornaments, all based around the same elements, but growing and changing each year, just as Wyatt would have done.

The main elements of the ornaments were an easy choice. Each of them special to us and steeped in meaning:

- Teddy Bears: A source of comfort for children and a symbol closely associated with the Janeway.
- Angel Wings: A memorial to our angel children who could not stay with us longer and a tribute to the medical angels – doctors, nurses and medical teams – who work with such tireless compassion to care for our sick children.
- Stars: Wyatt was our Little Star, and stars represent hope and guidance – both for medical teams and families, when children are sick. Stars are also associated with Christmas, so close to when he passed. Each year the ornament would also feature an additional star, one for his age at each year of the project.
- The project name and year would be featured on each ornament, meaning his name would carry on.

With the elements chosen, we began working on the designs and looking for a material and means of production. With Yvonne and I working together, the designs came together quickly. For production, we turned to our own past again. For our wedding, we had obtained a number of pewter pieces – glassware with emblems, jewelry, etc. – and the workmanship was exquisite. Pewter was durable and beautiful, and we’d heard of series of pewter ornaments being commissioned.

We researched the company that our pewter items had come from – Aitken’s Pewter – and the final piece of the project fell into place. Aitken’s Pewter was a family-owned and operated company in Atlantic Canada – New Brunswick – and right there, on their website, was a brochure detailing a fundraising program they offered. We reached out to them and were contacted by the company owner, Martin Aitken.

From those initial calls, through the design rendering process, packaging, production and all the other details – big and small – the Wyatt’s Stars pewter ornament series came to life.

In those early days, we couldn’t possibly have known where the project would take us. How successful the project would be, all of the people we would meet, the volunteers, the supporters, the personal and heartfelt stories from people with their own connections to the Janeway or who were touched by his story.

With the final year of the project upon us, it is almost unbelievable that we have come this far. That the years have slipped by so quickly and so much has happened. We’ve raised over $30,000 for the Janeway Cardiology department, and we’re hoping for a very successful final year. We’ve received so much support and met so many people, friends and acquaintances that will stay with us long years after the project has ended. Wyatt’s name, and the project, will be featured on a new Wall of Miracles at the Janeway recognizing lifetime donations over $25,000. His name and thousands of stars in his memory hang on Christmas trees every year, including our own, and even in windows, cars and other places throughout the whole year.

It is humbling, heart wrenching and comforting, all at the same time, to know that long after the project itself has ended, Wyatt’s story and a legacy of hope and help for others in his name will continue on.

JKL – October 2017

This is such a wonderful project, and a beautiful tribute to your son, Wyatt. Yvonne and Jimmy, you are to be commended for your dedication to the Janeway, and for raising much-needed funds for the Pediatric Cardiology department. Your son will never be forgotten, for he lives on in the hearts of many. 

Supplies of the final ornament in the series are limited, so please be sure to get yours! Email wyattsstars@gmail.com to arrange for mail order. Wyatt's Stars will be available at the North Pole Christmas Fair at the Jack Byrne Arena from December 1-3. They will also have a small number of previous years ornaments, if you are looking to complete the set! All proceeds go to the Janeway.

Halloween Recap

I'm a day late but I wanted to wish you all a Happy Halloween!

We have been enjoying the festivities - visiting the farm and the pumpkin patch, and doing our best to keep up with all that is going on this time of year. It's been a busy couple of weeks for us (not that we are ever not busy), but it seems like there are certain times when everything happens all at once.. and this is one of those times.

We didn't go all out for Halloween this year, as far as decorations and things. We are selling our house, and it didn't seem like spider webs and tombstones would add a lot of curb appeal. I may be wrong, but I didn't want to take any chances. And it looks like I made the right call, because our house is SOLD!  It's great, and we are happy about it, but with a weird sort of jumble of feelings as well. Andrew and I really love this house, and we have spent some of our best years here, but as I've said before, we need more space and it is time to move on. We are here until the end of November, and then will be staying with my parents until our hew home is ready (Thanks Mom and Dad!!).

It is a relief to have this part of the process over with. I have to say, it was quite challenging having to pack up three children and all of their equipment every time there was a scheduled viewing. It would take me a full day to get the house ready each time, cleaning and tidying, hiding medical equipment and filling the cars with mobility devices - wheelchairs, walkers, standing frames, you name it. On top of trying to fit in all of the daily appointments and therapies and home programs for each child, it was just too much. Honestly, I just didn't have time to deal with the house stuff, so I'm glad that part is over with!

Even though we didn't go overboard with the decorations, we did go for it with the costumes!

Considering all that Brennen has been through, and how well he recovered from his spinal surgery earlier this year, we thought this costume was appropriate! What a Champ!! We also had a Super Girl, and a tiny parrot who rocked their costumes and stole all of the attention at the parties we attended.

We went to the Halloween party at Easter Seals on Sunday, which is always such a great time! I just love seeing the little ones all dressed up, and to see how they've grown from year to year. Brennen is one of the 'older kids' now, which I still find so hard to get my head around. He was always one of the youngest in his group, but he is a big boy now! Many of the older kids have moved on and outgrown the Halloween parties, and maybe Brennen only has another year or two, but for now he is still interested and still loves to be a part of the celebrations (and my Mamma heart is going to milk it for all it's worth!)

We trick-or-treated at the Janeway yesterday. Every year the staff and volunteers go over the top with the decorations, treats and costumes, creating a positive, fun environment for patients and their families. Having to spend occasions like this one in the hospital is no fun for anyone, but the Child Life Department at the Janeway ensures that the children get to experience the joy of each holiday while being away from home. Every kid deserves to have fun on Halloween, and it was wonderful to see smiles on the faces of children who are battling some pretty serious illnesses and conditions.

I have to add here that I don't have all happy memories of Halloween at the Janeway. Brennen's First Assessment Clinic day actually fell on Halloween (twelve years ago), and I spent one of the hardest days of my life in an examination room with doctors and therapists who were dressed as pirates - complete with tea leaves on their faces and hooks for hands, telling me for the first time that my child has cerebral palsy. It was bizarre, and uncomfortable, and not entirely appropriate. I have since learned that they no longer hold First Assessment Clinic on Halloween, so I am happy about that!

While trick-or-treating through the hospital yesterday, Andrew and I decided to visit the NICU with our littlest baby boy. He spent several weeks there after he was born, before he was able to come home with us, and we haven't been back there since. The nurses and neonatologist were so excited to see him again! It was an emotional moment for me to see how much love they have for our boy, and how proud they are of how far he has come. I cannot say enough about the incredible staff in our Neonatal Intensive Care Unit. They provide such high quality care to these precious little babies who fight so hard to be there. I was so happy to be able to go back and show them just how well our boy is doing! It was also a sentimental journey for me, thinking back to how this baby came into our lives. Those early days spent visiting him in the NICU changed me forever, and my memories of that time are the ones I go back to when things are rough and when life feels overwhelming. This was not ever how I imagined that our family would grow, but am I ever glad that we opened our hearts to the possibility of providing a loving home to children who need us the most. We have been through a lot, but adversity has shaped me and made me strong. It’s given me the family and life I have today, and I wouldn't trade this path for any other.

I hope you all had a Happy Halloween!!

-Julie xo

The Janeway: An Impossible Dream Hospital

On March 30th, I had the distinct pleasure of attending a lecture by Dr. Rick Cooper titled, “The Janeway Child and Rehabilitation Centre – An Impossible Dream Hospital". The lecture took place at Hampton Hall in the Marine Institute, and was part of a series of talks presented by the Newfoundland Historical Society.

"In August 1966, the Charles A. Janeway Child Health Centre opened and became a referral centre for all sick children in the province and became an affiliated hospital of Memorial University of Newfoundland Medical School. Before Confederation, child health care in Newfoundland and Labrador was below standards when compared to other Canadian provinces. After Confederation some improvements were made particularly in public health but Dr. Cliff Joy, a pediatrician in 1958 felt that the hospital treatment of children was below standard and the province lacked a central referral centre for sick children. He advocated for a central free standing Child Health Centre in the Province. In 1960 the Americans closed Pepperrell and made the base hospital available to the Province. The Newfoundland Medical Association, the Premier, the March of Dimes and the Rehabilitation Community wanted the Pepperrell hospital to be a Rehabilitation Centre. Dr. Joy persisted and because of several events and the support of several prominent Canadian and American pediatricians was able to persuade Mr. Smallwood to make the Pepperrell Hospital a Child Health Centre. In his lecture, Dr. Rick Cooper will trace this story of the Janeway hospital, and the development of child health care in Newfoundland."

Dr. Cooper has been a practicing pediatrician at the Janeway for the past 43 years, providing quality pediatric care to the children of Newfoundland and Labrador since 1974. He has conducted extensive research on the development of child health care in Newfoundland, and has a forthcoming publication on the history of the Janeway Children’s Health and Rehabilitation Centre.

The Janeway recently celebrated it's 50th birthday (which I wrote about HERE). My family is all too familiar with the current Janeway hospital, and I remember visiting the previous Janeway site when I was young, but I was not aware of the challenges that were initially involved with establishing a dedicated children's hospital here in our province. Dr. Cooper's presentation was fascinating, and his personal connection - not just to the building, but to the people - were what made it so engaging. This man has stories, and I could listen to them for days.

My family is fortunate to have had Dr. Cooper play such a pivotal role in our own story. My son, Brennen was born in California in 2005. Soon after his birth, it became clear to me that something was not quite right, but the doctors there dismissed my concerns and sent me away, saying that my baby was "fine" and telling me not to worry. I continued to seek help in California, but was getting nowhere, so after several difficult months, I returned home to Newfoundland to be with my family. Within a couple of days, we got an appointment with Dr. Cooper, and as soon as he saw Brennen he knew there was something wrong. He acknowledged my concerns and ordered a battery of tests, and for the first time since my baby was born, I felt like someone finally cared enough to try and help us. 

Turns out, Brennen was not fine. He was diagnosed with Spastic Quadriplegic Cerebral Palsy, Seizure Disorder, Global Developmental Delay and Cortical Visual Impairment. Dr. Cooper didn't mince words when he told me that his condition was very serious, and that my child was going to have a difficult life. My heart was broken, but I appreciated his honesty and his gentle, caring nature. I will never, ever forget those early days. They were some of the hardest of my life, but I have to thank Dr. Cooper. Understanding what was going on with my child was the first step to accepting our situation and coming to terms with all that lay ahead for us. I often wonder how things would be today if I hadn't returned home to Newfoundland. How many times would I have been dismissed and turned away? How long would my child have gone undiagnosed and not have received any therapeutic services? How much longer could I have survived the anguish of not knowing what was wrong with my baby?  

Dr. Cooper is a strong and respected leader in the child health care field, and we are so happy to have him on our side.

Dr. Cooper's talk also reaffirmed for me the importance of sharing our stories. His upcoming book contains the accounts of several individuals - patients, nurses and physicians, who share their personal experiences with the Janeway. He says, "It's really important that we tell our stories. Let's face it, the history of surgery is probably a bit boring, but someone's experience at the Janeway is not."

This is exactly how I feel about sharing our own experiences, and I will continue to write about our journey in hopes that it might positively impact someone else, or might inspire hope and encouragement in a parent who is struggling. Sharing the stories of other children and families in my Tulip Tales series has been an absolute honour, and I look forward to sharing more with you in the future. (If you would like to be featured, please send me a message!) 

We all have a story to tell, and I am using this space to try to change the way the world sees anyone who is different, to accept differences in others, and to accept our own differences that can make us feel inadequate. So please keep reading, and keep an eye out for Dr. Cooper's book, which will be released later this year by Boulder Publications! 

And, We're Home!

My boy is home!!!

After 28 days in the hospital, and well on his way to recovery, Brennen was discharged from the Janeway this past Thursday!

Though he is still having some pain and discomfort, he is also having lots of happy time and big bright smiles for everyone! It is hard to believe that the surgery is over. We were so anxious about it for so long, and now (hopefully) the worst is behind us.

The correction in Brennen's spine is incredible. He gained 5 inches in height, and he looks like a different child. His x-rays are shocking. As in, they literally took my breath away. The sight of all of that metal inside of his tiny little frame is really off-putting, but knowing the benefits he will gain from it makes us very hopeful.

He has been sitting up in his wheelchair, and is more comfortable now than he ever has been in this chair - even so soon post-op. He still has 58 staples in his back, which will be coming out on Tuesday. The incision is clean and long and will leave him with a serious scar to show what an unbelievably strong boy he is (in case anyone needed proof). His poor little body has been through so much, it breaks my heart, but he has handled it all like a champ!

Andrew and I are so happy to have our boy back where he belongs. The past several weeks have been tough on everyone, and we are happy to now be enjoying the comforts of home. We are looking forward to getting back to some sort of 'normal'. We are excited to be able to do fun things with Brennen again like we used to.. before he became too uncomfortable to tolerate any sort of activity. We are all more comfortable now. I am aware that he still has a ways to go to be fully recovered, but I cannot help but focus on the beauty of today and the amazing potential of tomorrow.

Thank you to Megan Nicole Art and Illustration for this beautiful drawing of our family - bags packed, headed home from the Janeway! It is so personal and thoughtful, and we absolutely adore it!! I can't wait for warmer temperatures to be able to get out and enjoy a picnic just like this!!

Thank you again to everyone who has been thinking of us and sending well wishes to our precious boy. We made it through a very challenging time thanks to the love and support of all of you! xo

Hanging in there...

A quick update to let you know where we are right now.

Brennen was admitted to the Janeway earlier this week for pain management and observation. He has been terribly uncomfortable the past few weeks because of the curve in his spine and how that affects his hips and really everything else. He hasn't been able to sit up at all, and has been going downhill quickly, to the point where he is no longer even comfortable lying down. We knew that he would be having surgery soon, but it looks like it will be even sooner than we thought - like in the next week or two. 

He is having spinal fusion surgery. Don't Google it. It's a doozie. They are doing all of the pre-op tests now and are keeping him comfortable with heavy pain meds. We are not sure if we will be here (in the hospital) until his surgery, or if we might be able to go home in between, but we are settling in for the long haul. 

Brennen had a good day today. The smiles have been few and far between lately, so we are hanging on to every glimmer we can get! Underneath all of the pain and discomfort and medicated drowsiness, my boy is there, just waiting to get back to his happy ol' self. And we are cheering him on, preparing ourselves for what's coming, and focusing on the good. We are scared, but we are digging deep to find the strength and courage that we know is there (sometimes I don't believe it's there, but I keep telling myself it is). Life is hard, and I am OK with it being hard when there are things that I can fix, but I find it hard to breathe when there are hard things that I cannot fix. Like now.

Thank you to everyone for the outpouring of love and support for my sweet little boy. Thank you for your calls and visits, your thoughts and emails. 
I appreciate every single one.

Please keep all the positive vibes coming our way. We will surely need them!

I will keep you posted as things progress...

-Julie xo

Wyatt's Stars

"The brightest stars burn but for a short time."

Wyatt Lane was only 6 months old when he passed away just before Christmas in 2012, but in his short time his ever-present smile touched the hearts of all who knew him. Born in May, Wyatt spent his first three weeks at the Janeway Children’s Hospital in St. John’s, Newfoundland before returning to his family in Port aux Basques.

In November, Wyatt, their "Little Star", returned to the Janeway where he was diagnosed with an extremely rare heart condition. Under the attentive care of the Janeway team, he fought bravely, never losing his signature smile, for 33 days.

The Wyatt’s Stars project is an initiative of his family to provide support to the Janeway Children’s Hospital to honor his memory and help ensure that other children can receive the same dedicated and loving care that he did in both his first and last days.

Each Wyatt's Stars ornament features:

Teddy Bears - A source of comfort for children, Teddy Bears are also closely associated with the Janeway Children's Hospital.

Angel Wings -  For our Angel children who could not stay with us longer, they also honour the medical angels - doctors, nurses and medical teams - who work tirelessly and with so much compassion to care for our sick children.

Stars - Wyatt was always our "Little Star", and stars represent hope and guidance, both for medical teams and families when children are sick. Also a symbol associated with Christmas, our "Little Star" passed away just a week before Christmas in 2012.

Now in it's fourth year, the Wyatt's Stars project continues to raise much needed funds for the Janeway Children's Hospital, and purchasing an ornament is a beautiful way to honour the memory of this precious little boy who was taken too quickly.

Losing a child has to be the most difficult, the most devastating and life shattering thing a person can ever endure, and I hope that Wyatt's parents - Yvonne and Jimmy can find strength in the outpouring of support that has come from their community and all across our province. Having the opportunity to love a child, even for a short time, is a gift and a blessing, and Wyatt was loved fiercely.

Visit http://www.wyattsstars.ca for more info. Click HERE to download an order form, or visit their Facebook page HERE.

Celebrating the Janeway!

On August 9th, 2016, the Janeway Children's Health and Rehabilitation Centre will celebrate its 50th birthday! That's 50 years of providing quality pediatric health care services to the children of Newfoundland and Labrador!

I'm sure that everyone in our province can tell a story of how the Janeway has touched their lives, or why the facility is so important and special to them. The Janeway hospital was originally located in Pleasantville, in a building that once housed the American military hospital at Fort Pepperrell. I remember visiting the old Janeway as a child - never for anything overly serious, just a few typical childhood injuries. We were very fortunate to not require the services of the children's hospital on a regular basis, but my family always had the peace of mind in knowing that it was there if my sister or I ever needed it.

In 2001, Eastern Health opened a new, state-of-the-art building as part of the Health Sciences Complex, and this became the home of the new Janeway Children’s Health and Rehabilitation Centre.

Now that I have my own child, we are 'frequent flyers' of the Janeway. Brennen has been well cared for by many of the doctors and staff, and he has had some wonderful experiences with members of the Rehabilitation team. We have become close with the professionals who have treated Brennen over the years - the nurses who have held my hand through some really challenging moments, and the therapists who have lifted my spirits at times when everything just seemed so overwhelming.

To celebrate this big birthday, Eastern Health hosted a celebration for children who are currently or have previously been cared for at the Janeway. The party was a pirate theme, and it was so great to see so many of our friends there to celebrate the occasion! There was face painting, singing and dancing, and lots of fun photo opportunities!

The St. John Ambulance Therapy Dogs never miss a party!

I am so thankful for the supports and services we have received from the Janeway. It has been a second home to us on many occasions, and it is a place where we truly feel that Brennen's health and safety and our best interests as a family are considered first and foremost.

The families and friends we have met at the Janeway have become such a big part of our lives. Friends that we met early on in our journey - whether from being in the right place at the right time, or just being in the same place A LOT of the time - have remained close friends to this day. We have bonded over our special children. We have a lot in common, and we understand each other. We are the same in the fact that the love we have for our children is greater than the fears and diagnosis, and that is a powerful bond.

It was an honour to be able to celebrate this milestone today with the staff and patients of the Janeway Children's Hospital.

Happy Birthday, Janeway! Here's to many more years of exemplary patient care, and a future full of possibilities for the children of our province!

Here is a slideshow of some of Brennen's Adventures at the Janeway:


Brennen's Adventures at the Janeway by Slidely Slideshow

Miracles Can Happen

We love to watch the Janeway Telethon as a family. We watch to see the familiar faces of people we know - the doctors and nurses, surgeons and therapists. And we watch to see the touching stories of hope and healing, and the introductions to the Janeway "Miracle Kids".

Ava Mooney was one of this year's Janeway Miracle Kids. A while back, I shared Ava's story HERE.

Ava was born with Arthrogryposis Multiplex Congenita, a condition in which the joints become permanently fixed in a bent or straightened position. For Ava, this condition is quite severe. The joints of her arms, hands, elbows, wrists, legs, knees and ankles are some of the areas that have been affected, allowing her very limited mobility.

When we first met Ava, we didn't know anyone else with her condition, so we really didn't know what to expect from her, but it became clear very early on that she was a very determined little girl. She found ways to get around, and to do the things that she wanted to do. After months and months of working with Ava, and supporting her through surgeries and therapies, she took her first independent steps with Andrew and I. We were completely amazed and so excited for her! I was happy to have captured some of her first steps on video, as you can really see how happy she is, and how proud we all are!

Here is Ava's miracle story:

Working with children with special needs is both challenging and rewarding, and it is a learning experience for us each and every day. It is a tremendously rewarding role that we have as educators and child care providers, and we don’t take that for granted. We have had the incredible opportunity to witness some really special moments with our children, and we are honoured to be a part of their success stories.

We have an amazing little group of children here at Little Tulips, and we are thankful for the opportunity to work with each and every one of them!

It is exciting to think of what the future might hold for Ava. There is nothing stopping her now!

Tulip Tales: Ryan

You guys! I've got the sweetest little boy to introduce to you today! 

At just six months old, baby Ryan has already become a teacher in the lessons of unconditional love and acceptance. Ryan is the pride and joy of his Mom, Dad and big sister, and he has captured the hearts of his family and friends.

Ryan's Mom, Courtney shares their story:

*****

I had a very normal, healthy pregnancy. I started taking prenatal vitamins months before I conceived, as my husband and I were trying for a baby. I ate well and exercised. I believed I was going to do everything I could to make sure this baby growing inside of me was healthy. Throughout my pregnancy, I experienced extreme morning sickness and at 5 weeks I was prescribed Diclectin. After a few weeks with no improvement, I began trying every non-medicinal option to help ease the sickness. Herbal teas, ginger, acupressure.. you name it, I tried it. Finally when I was eleven weeks pregnant, I was prescribed Zofran as a last resort. To my knowledge, Zofran is typically prescribed to chemotherapy patients to help with nausea, and is very rarely prescribed to pregnant women. But trusting my doctor, I started a very low dose of Zofran and was told that with the dose being so low, I wouldn’t have any worries about it affecting the baby. After 2 months of taking this medication, I decided to stop because the dose I was on was no longer helping me and I did not feel comfortable increasing the dosage. Morning sickness was a big part of the remainder of my pregnancy.

Aside from the morning sickness, everything was great. The baby was growing beautifully, heartbeat was always strong, and on July 15^th, 2015, I had my 19 week screening where we found out we were having a boy! The screening ultrasound was completely normal, showing nothing at all out of the ordinary.

November 24^th, 2015 at 3:42 in the afternoon, our precious baby boy made his way into the world. A very quick labour and delivery (so quick I almost didn’t make it to the hospital!) put stress on Ryan’s heart, so as soon as he was born they whisked him away from me. I was reassured over and over again that he was fine, that he was just being checked out. About 10 minutes had gone by and I still had not laid eyes on my baby boy, but I was so overwhelmed with how quickly everything had just happened, I hardly noticed that they were taking a very long time with Ryan. Finally, a pediatrician came to the foot of my bed (with no bedside manner at all, I might add), followed by about 6 residents, and the first words out of his mouth were ‘We are concerned about your son's muscle tone. It is very low, which is not normal for a baby born full term.’ I could not wrap my head around the fact that they had a concern already. My baby was supposed to be born perfectly healthy and normal. He then went on to tell me he was also concerned about the shape of my son's head, the shape and size of his ears, and some subtle facial features. How could this be happening? Not once did this doctor say ‘Congratulations! You have a beautiful baby!’ or any variation of that. All I was hearing was concern after concern. And then I heard it. The words that made my heart sink. Down syndrome. The doctor said he had reason to believe that my baby had Down syndrome. He and the residents then all just stared at me, waiting for me to have some sort of response. What was I supposed to say? I just nodded my head and they cleared the room. As soon as they were gone I started crying uncontrollably and saying ‘I hurt my baby’ over and over again. My only thought was that it was all my fault from taking Zofran during my pregnancy. I couldn’t believe I had done this to my baby boy. (I do know better now, and that my son had Down syndrome from the moment he was conceived. Taking Zofran had absolutely nothing to do with it. But in that moment I blamed myself and I was devastated).

Finally after what seemed like hours, they handed me my baby. To this day I feel like I was robbed of those precious first moments with him because as I was holding him for the first time, I was crying. The tears were not tears of joy. The tears were from fear, worry, disbelief and sadness. Why couldn’t they let me hold him first, and talk to me about their concerns at a more appropriate time? I ask myself that question a lot. It goes to show that after all of the advances made in medicine and the medical field over the years, some doctors have not yet mastered compassion. All I could think in those first moments with my baby were ‘What are they seeing? How could there possibly be anything wrong with him?’ he looked perfect to me.

I was later brought up to the recovery room, where I spent the next 2 days. Thankfully, aside from concerns about Down syndrome, Ryan appeared to be perfectly healthy. We were seen by another pediatrician, who was more sensitive when talking to me, which I appreciated so much. We were also seen by a geneticist, who gave Ryan a quick but thorough physical examination making note of any and all features that seemed to correlate with Down syndrome. She also said to me that in all her years of being in the field, she has met very few babies who have Down syndrome and she wasn’t able to spot it right away. Ryan was more of a tricky case because the concerning physical features were quite subtle. Once the geneticist was finished with us and left the room, I broke down crying. This was all becoming too real for me. I still could not believe this was happening. On our second and final day in hospital, Ryan had a blood sample taken that would be sent to the lab to determine for sure whether or not he had Down syndrome. I was told that I would get a phone call the next day with the results, and then we were discharged. I was happy to be leaving the hospital, to finally go home. However, when I got home, the reality of what might be, hit me much harder than it had in the hospital. That first night home was the most emotionally draining time I had experienced in my life up to that point.

The next day, at 1pm, we got the phone call. "Ryan actually does have Down syndrome." were the doctor’s exact words. I remember feeling in shock, but also not surprised, all at the same time. The following days were filled with panic, crying, fear and uncontrollable anxiety. I was so afraid of what life was going to be like for my son growing up with Down syndrome. Will he get through school and graduate? Will he ever get a job? Will he be able to live independently? Will he get married and have children of his own? My baby was barely 2 weeks old and I was worrying and obsessing over things that were years and years away. I was even more afraid of how I was going to handle this. How am I supposed to raise a child with Down syndrome? I didn’t know anyone with Down syndrome and I had no idea what to expect. Am I strong enough to be the mom he needs? These questions swirled around my head all day every day. Down syndrome was on my mind 24/7.  Then one day, something amazing happened. I was out running errands, just me and Ryan (he was about 12 days old), and when I returned home I suddenly realized that I had just gone the whole day without thinking about Down syndrome. I just spent the day with my baby and I felt normal for the first time since he was born. It was in that moment that I told myself everything is going to be fine. This may not be the path I expected to be on, I didn’t ask for this, but neither did Ryan. This was the hand that we’d been dealt and it just so happens that we got really lucky. There’s no better hand than ours. We won the jackpot. I stopped just thinking about myself and how scared I was and thinking about what I was going to do, how I was going to cope, and I thought about my son. He didn’t need me to be afraid and worrying. He needed me to love him and accept him for who he is. No matter what. It was just that simple. I haven’t looked back since. I am so thankful that I was able to get to a place of being at peace with our new normal when I did, because I started being able to really enjoy my son. Ryan is just that - my son. He was made perfectly for me, perfectly for this world, and ‘extra’ special. I made the choice to live day by day, moment by moment, right by Ryan’s side. Sure, there are a lot of unknowns when your child has special needs, but life is full of unknowns for all of us. We can drive ourselves crazy worrying about what the future holds for us, or we can live enjoying every day as it comes. We are not promised 10 years from now, 5 years, 1 year, or even tomorrow. I would be lying if I said I never worry anymore. Of course, we all worry about our children, but I can honestly say that I couldn’t possibly be happier.

I know that I am the best person to raise my son. No one could ever be a better mom to Ryan than I can, and no one will ever love him more than I do. I never thought that I would ever get to a place where I was even ok with Ryan’s diagnosis, so to be able to say that I not only accept it, but I embrace it, and I am thankful for it, is an amazing feeling. I am so thankful for Down syndrome because it has made my son who he is. He is so bright, funny and charming. He has the most infectious smile and the way he looks at me melts my heart every single time. He is loving, playful and so smart. He is perfect. He is my greatest accomplishment. I am so thankful that I am the one who gets to go on this amazing journey with him. Every accomplishment we will celebrate together, and every obstacle we will face and overcome together. Down syndrome is just one of the many things that make my son special. What will this diagnosis mean for Ryan's development and his future? No one knows. But I do know that anything my boy wants to do, I will do everything I can to help him make it happen. He will grow up being loved and adored, and appreciated for who he is. He will know nothing but unconditional love from his family every single step of the way. He will be a wonderful teacher of acceptance, patience, and love. He will have the happiest life possible, I'll make sure of that.

Ryan has brought more joy to my life than I could ever have imagined, and he has touched the lives of so many people. He was meant for this world, to make it a whole lot brighter. Ryan makes it so easy to feel like everything is going to be great. He always has a smile on his face, he is always happy, and his happiness is contagious. As long as Ryan is next to me, life will always be good. It might not always be easy, but it is good. Down syndrome is one of the best things that has ever happened to my life. 

Today, Ryan is a happy 6 month old baby boy. So far, he is meeting all of the milestones expected of a typical baby, and I couldn’t be happier with that. Ryan is being followed by physical therapists, occupational therapists and speech therapists because it is expected that he will at some point start to show delays in at least some areas of development. There is an incredible Down syndrome clinic at the Janeway Children's Hospital, and I am so thankful that Ryan will get all the help he needs to live the happiest, most fulfilling life possible. Everyone deserves that.

With Ryan's diagnosis came an overwhelming number of doctor’s appointments. Since children with Down syndrome are at a higher risk for everything from hearing and vision problems to cancer, Ryan was seen by a multitude of doctors to either discover or rule out any health problems. Everything came back normal and healthy, except for his heart. It was discovered at 8 days old, that Ryan had a large hole in his heart that would require surgery to repair. In just a couple of days (on June 5^th 2016), I will be taking Ryan to the IWK Hospital in Halifax to have open heart surgery. When I first got the news of his heart condition, I thought, what else could possibly go wrong, my baby doesn’t deserve this. Now after 6 months of putting up with being poked at and picked at, needles and blood work, Ryan is stronger than ever and totally ready to take on this next adventure. His strength gives me strength, and assures me that no matter what comes his way, he is going to face it with a smile. And I will be there right next to him every step of the way. 

***** 

Courtney, what a beautiful boy you have! I can relate to so much of what you wrote here. I have said many times before that when you have a child with special needs, regardless of the diagnosis, many of the feelings and emotions us parents go through are the same, and this is evidence of that. Like you, I remember crying tears of fear, worry, disbelief and sadness. I remember feeling helpless and scared. But, like you, I also have embraced our circumstances, and we live life to the fullest, feeling very lucky to have such a special little boy in our lives! I know that my son's diagnosis is a blessing, and has not only made him the person that he is, but has also made me the person that I am today. I hope you always know that you are not alone. You are the perfect mother for Ryan, and he will get through anything with you by his side. 

I know that everyone who reads this will be thinking of sweet Ryan over the coming days, as he undergoes his heart surgery. We wish him all the best with the surgery and pray for a speedy recovery! Much strength and love to your family!