Florida

The Happiest Place on Earth

In February 2013, our son Tyson was given the opportunity to have a wish granted by Make A Wish Foundation of Canada. Wish foundations like Make A Wish grant wishes to children who have life-threatening medical conditions, and as a child with complex congenital heart defects Tyson qualified for a wish. This, in and of itself, is a bag of mixed emotions. On the one hand we feel so blessed that Tyson was given the opportunity to have his wish granted, but on the other hand it is hard to face the reality that he actually qualified for such a wish. When his doctor filled out the forms to verify that Tyson had met the medical eligibility criteria required to have a wish granted, it just reinforced the reality again that our child was born with a life-threatening medical condition and his future is unclear.

The next step after approval was for Tyson to fill out a questionnaire to help Make A Wish narrow down an appropriate wish for him. He had to answer four questions. “I wish to have…” “I wish to be…” “I wish to go…” and “I wish to meet…” The last question was easy for Tyson. As a typical four year old boy interested in all things superhero, he wished to meet Spiderman, and of course Mickey Mouse.   Make A Wish granted Tyson his wish to meet Spiderman at Universal Studios in Orlando, Florida. In addition to meeting Spiderman, a week-long stay at Give Kids the World Village in Kissimmee, Florida was part of the wish package too.

Give Kids the World is a 70 acre village that exists only for families who’ve been granted a wish from a wish-granting organization. They provide accommodations, meals, entertainment and theme-park tickets to the best-loved attractions in Central Florida. Our family lived at this magical place for an entire week, enjoying all that Florida had to offer. After our experience at Give Kids the World village, we now refer to this place as “The Happiest Place on Earth.”

It’s the happiest place on earth because while you’re there, you forget about all of life’s burdens and worries. You don’t cook, you don’t clean, you don’t attend any medical appointments or therapy sessions, you don’t think about all that’s going on back at home. You just get to celebrate life with your family. The happiest moment for our family was watching the sheer thrill on Tyson’s face when he met Mickey Mouse for the very first time, and hearing him giggle and laugh when Mickey pretended to tickle him. Another moment we’ll remember forever was seeing how enthralled Tyson was with Spiderman and revelling with awe when he had his picture taken with the superhero. There’s something about a child’s dream coming true right before your very eyes that makes you want to cry with overwhelming joy.

Mickey (397)Spiderman and Ty

It may seem trivial to some, but to a family who has watched their child endure so much pain and so many medical procedures that you can’t possibly remember them all, seeing their child happy and bouncing all day long and celebrating life is priceless and satisfying. Give Kids the World goes above and beyond what you would ever expect. From the moment we were welcomed by a GKTW volunteer at the airport we were treated like royalty and we literally didn’t have to lift a finger the entire holiday. Not only did we receive more theme park tickets than there were days in the week, Tyson was also given a ‘magic button’ which allowed our family to advance to the front of every ride line up. We enjoyed great food and great service at the Gingerbread House, Katie’s Kitchen, and unlimited ice cream treats at the Ice Cream Parlour. There was nightly entertainment at Julia’s Safari Theater, daily personal meet and greets with all kinds of the Disney characters, and every time we returned to our villa after a day of fun we found a gift for each of our children to help them remember their stay. It’s like Christmas every single day. All of this can only happen because of the 1500 people who volunteer there weekly.

As if the trip wasn’t enough, when we checked we were given a ‘farewell package’ which included a CD with hundreds of pictures of our family that the volunteers had captured during our stay, a “World Passport” which included tickets to local theme parks to enjoy once we arrived back home, and vouchers from various companies willing to donate photos and even make a scrapbook of our trip to help keep the memories alive.

Just a few weeks ago we returned to Give Kids the World for a day as an Alumni Family. Tyson was excited to see Mickey Mouse again and our oldest son was just as excited to go back too – he wanted to visit the Gingerbread House for breakfast because they make the best waffles in the whole entire world. Once again, we were treated like royalty. The volunteers went out of their way to make us feel just as welcome that day as we had during Tyson’s wish trip back in 2013. And once again my husband and I sat back and witnessed our kids having the time of their lives, being silly and having fun; seeing the sparkle of excitement in Tyson’s eyes as he waited for his turn to high-five Mickey Mouse, and enjoying the village through the eyes of our now three year old daughter, who at the time of Tyson’s wish trip was too young to really enjoy it. And of course we made a few visits to the Ice Cream Parlour for unlimited ice cream treats.

Tyson with Mickey Mouse in 2015

Tyson & Mickey 2015

The whole gang with Mickey Mouse in 2015

GKTW 2015

At Give Kids the World, they really do give kids the world. It is, without a doubt, the happiest place on earth.

If you or someone you know has been diagnosed with a life-threatening medical condition and you think they might qualify for a wish, contact Make A Wish or another wish granting organization today and help make their dream become a reality.

To learn more about Give Kids the World, visit www.gktw.org

Melissa 

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Planes, Trains and AED Defibrillators

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At the best of times, road trips with the kids can be stressful. Parents take painstaking care that there are plenty of snacks, activities, DVDs and music. All in the, sometimes vain, attempt to squelch the dreaded, “Are we there yet?”. These days, our jobs have been made a little easier with iPods and iPads, personal gaming systems, in-car DVD players and shrinking laptops. The worst thing that could happen is forgetting to bring enough chargers. But traveling with a baby or child with a heart defect becomes something very different.

I grew up spending summers in Finland, taking road trips to Florida, and driving to cottages…when I had children, I had no doubt I would do the same. In fact, my two eldest children have both been to Finland twice. My expectations and plans all changed when Owen was born.

Traveling with Owen is an adventure, in and of itself, but the planning is a virtual tour de force.

Traveling with a Heart Defect in 6 Easy Steps

Step 1:

The first step in planning a trip with our son is location. We cannot travel just anywhere. There has to be access to a children’s hospital, ideally a children’s hospital with a cardiac unit. Should Owen get sick we need to know that a hospital can manage his unique physiology. Even a simple blood test can be nearly impossible with Owen’s system. On Owen’s first trip to Florida, it took two nurses, a doctor, a shift change, followed by another doctor to get one vial of blood. All in all, this entire process took over 5 hours in a children’s emergency department.

The children’s hospital requirement limits us incredibly. This rules out pretty much all South American travel, some Northern Ontario cottage trips and even several European countries. It goes without saying the countries that do not even treat Owen’s heart condition, just allowing these babies to die, are out of the question.

Step 2:

Second step is medication. Owen is currently on 8 different medications, 3 of which require refrigeration. This means that I have to be able to keep the meds cold on the way there and at our destination. Not as easy as it sounds as the kind of cooler required to effectively keep the meds cold are large and cumbersome. Once the refrigeration issue is addressed, quantity becomes a concern. Because Owen receives all his medication through his feeding tube, his meds are in liquid form. Pills are easy to count, therefore you know if you will have enough. But when the medications are in liquid form it can be more difficult to determine. Especially given the medications do not always come in the same sized bottles, it becomes serious guessing game.

Step 3:

Next step…milk. Owen has a feeding tube, and does not orally consume enough nutrients to sustain himself. He receives a feed overnight of a special nutrient enriched formula. So, we need to make sure we have his feed pump, the pump charger, feed bags, formula, feeding tube extensions, emergency feeding tube…are you still with me?

Step 4:

Step four coincides with the previous. Owen receives a feed overnight of 600mL, slightly more then a water bottle. Tube feeding parents will know what I mean when I describe the “Fed Bed Phenomenon”. The tube that connects the child to the feed bag is called, in short, an extension. This extension has two ports or openings, one that a syringe fits into for medications and one that the feed bag fits into. Fed Bed Phenomenon happens/occurs when the meds port opens during the night thus resulting in the formula being pumped into the bed ALL NIGHT. Waking up to a bed full of formula and stomach contents is messy to say the least. But at home we have mattress protectors and washing machines…but a hotel room?

Ok, so we have a location, medications, feeding matters and its complications sorted out. Next…equipment.

Step 5:

Owen has an oxygen saturation monitor and a defibrillator (you can also add the feed pump to this category). The sat monitor is important in determining when a cold or other illnesses require medical attention. The defibrillator…well, that just doesn’t warrant an explanation.These are easy enough to pack…but again just more to carry and more to find space for.

Step 6:

Finally, incidentals. These are things that most parents probably already think about, like thermometer, fever reducers, first aid kit. Ours is a little more extensive. Owen can only take acetaminophen because ibuprofen causes him to have stomach bleeds. That’s easy enough. Heart kids are at a much greater risk of dehydration. We try to make sure we bring an electrolyte solution. Should Owen start throwing up, I immediately put him on a slow continuous feed to prevent dehydration which can be deadly for a heart kid, especially one who has already had a stroke. Travel can be hard on the healthiest of kids’ tummies, so we must be prepared.

Despite this epic packing list, I am pleased to say that we have been able to travel as a family. We recently returned from a successful trip to Florida to see grandparents and go to Universal Studios. Traveling with heart kids is not easy, but worth it. As long as we are prepared for every potential disaster…easy peasy, right? Our goal is to give Owen as normal of a life as possible. Family trips are part of the deal.

Just do not forget to pack extra iPod chargers.

Laura

Laura Veloso is a regular blogger for Cardiac Kids.  Read her bio and Owen’s story here

Be sure to check back next week for a post from Crystal