Happy 12th Birthday!

Today Tyson turns 12!  I'm having all the feels today!  Joy, pride, relief, happiness, humility, inspiration, overwhelm. We're so thankful for the past 12 years and what God had taught us through our journey with Tyson. 

Here's a few pictures of Tyson over the last little while so you can see how much he's grown.  I can't believe how much he's growing into a young man right before my eyes. 

Ok, and I have to brag a little about how our family is growing. Here's a recent pic of the whole family from this past summer.

Photo creds to our beautiful and talented niece Kayla from KHK Family Photography.

Every November I feel looming nervousness about Tyson's upcoming appointments at SickKids. This Monday, as a follow-up to his last appointment in April, he'll be having a stress test and pulmonary function test to double check that everything is still ok with his heart function. I'm not too too nervous about the results of those tests, because hey, he just ran a 3K race in October!

But we also have to meet with the genetics department to review the results from a genome study we did back in early 2018. We had a full genome study done on Brian, myself, and Tyson to see if they can discover anything in our genes that would predispose us to having a child with congenital heart defects. We participated in the study not so much to discover if we'd have another child with heart defects, but more so to help with research and answers for others in the future. As part of the study, they can also detect if we are predisposed to other serious health concerns like cancer. They've asked for Brian and I both to be at this appointment. I'm hoping this is just routine protocol to review the results together and it's not because they've found something we need to be concerned about. In any case, I'm thankful Brian can come along with us because the rule right now with Covid is only one parent allowed to accompany a child to his appointments. With the long drive in horrible traffic, along with the stress of Tyson's appointments, I often don't sleep the night before.


We try to get all of Tyson's appointments in on the same day but with a few extras thrown in this time, it's not possible this year. So on Wednesday, December 2 we go back again for a bone density scan, an abdominal ultrasound (to check up on his liver and kidney issues) a clinic appointment with thrombosis (because he's anticoagulated) and then the routine ECHOcardiogram, ECG, and a clinic appointment with his cardiologist. We'll also receive more information about if he needs to have an MRI or possibly even a cardiac catheterization sometime soon. We've received an exception to the 'one-parent' rule for these appointments too because of the anxiety of a stressful day combined with a long, stressful drive.

Your prayers for these upcoming tests are greatly appreciated.

This fall I had the opportunity to record a podcast called "The Shared Cup" with Alison Liddic where I shared what it's like to have a child with congenital heart defects. It was hard to be vulnerable and talk about the past, our difficulties and challenges in those early years of Tyson's life. I found that recording it really stretched me to get uncomfortable and talk about the hard stuff, even though I knew it would make me cry. Have a watch below if you're interested in checking it out.

If you or someone you know has a child with congenital heart defects or know of someone expecting a baby with heart problems, please share this podcast with them. I pray it hits the right person's ears and can be a source of hope and inspiration during those dark days. 

I don't know why the video won't show up from mobile devices. In case you can't see the video embedded here, you can watch it on YouTube here: https://youtu.be/BJXHm6zGFZU

All Things Are Possible

“With man this is impossible, but with God all things are possible.” Matthew 19:26

When Tyson was born, we were told that the odds of him making it to his first birthday were questionable.  But with God, all things are possible and Tyson is now 11 years old. 

After he made it through all 3 risky open-heart surgeries, we asked his cardiologist about Tyson's long-term prognosis and he said that Tyson would never be able to run a marathon. But with God, all things are possible and this past weekend, Tyson ran a 3 km race with his school.

Because of Covid, the regional 3K race was cancelled but we were able to get together with 2 other small private schools in our area and hold a race at a local farm. Tyson did amazing! And he didn't even come in last...he placed 31st out of 34 runners. We had him training a few times over the summer to build up his endurance and to gage whether or not he could actually even run the whole thing. I was able to go along for a few of his practice runs with his school and he was able to finish the race each time. Although he's not the fastest runner, he comes across that finish line looking like he's capable of running another kilometer. 

Here he is crossing the finish line. 

I wish I could have continued recording a little longer at the end but my eyes were drowning in happy tears and I couldn't see very well anymore.  I wonder if the other moms who were watching with me understood why I was sobbing a little. 

MY BOY WHO WAS BORN WITH A HALF A HEART JUST DEFIED ALL ODDS AND COMPLETED A 3K RACE! 

“With man this is impossible, but with God all things are possible.” 

Having a snack after the race

Tyson seems to be settling into a good routine with school now. The first week was really rough for him and he was so tired and extra sensitive about everything.  He cried every single day that week and when I'd ask him why, he'd just keep telling me how much he hates school and how it's just too hard for him. Once we got into a bit of a routine again though, he seems to be doing ok and is settling in alright.  It's always an adjustment for him after the summer holidays, but this was a long six month break so I can see why it would take some time to adjust again. 

Tyson has his annual cardiologist appointment coming up in November.  Also, as a follow-up to his last appointment in April, he'll be having a stress test to double check that everything is still ok with his heart function.  We always try to get all his appointments on the same day but this time we have too many of them so we're not able to.  So we have to go Monday, November 23 for a pulmonary function test and stress test, and results from a genome study we did back in 2018. Then on Wednesday, December 2 we go back again for a bone density scan, an abdominal ultrasound (to check up on his liver and kidneys) a clinic appointment with thrombosis (because he's anticoagulated) and then the routine ECHO, ECG, and a clinic appointment with his cardiologist. 

We will give you an update after those appointments. 

Melissa :) 

Wednesday, April 29th

Tyson had his appointments today at SickKids. He had an echo, ecg, holter monitor and a meeting with his new cardiologist Dr. Emilie St-Jean-Michele.  The good news is that his echo hasn't changed since November which means his heart function hasn't changed, so that's very reassuring. Dr. Emilie says it's possible that the Fontan pressures may have changed and an echo doesn't pick up on heart pressures so she wants to run a few more tests, specifically a stress test and an MRI. The stress test is the best and least intrusive indicator but with COVID, they aren't doing stress tests right now (it's too risky for staff because it involves mouth pieces in patients' mouths and with droplet precautions, they've discontinued stress tests for now.)  She sent Tyson for some blood work because that could also give some indication of his pressures changing.  Depending on the results from today's blood work, the stress test and MRI could be a couple months away.  If she finds something alarming with his bloodwork, the tests will happen sooner than later. 

As you know, the COVID outbreak at SickKids is a concern for us but I have to say that the safety precautions at the hospital were very good.  We felt extremely safe with the extra measures that they're taking to stop the spread of COVID there. Security at the entrance, health screening, new masks given to everyone (even though I had just put a brand new one on!) only 3 people in elevator at a time, everyone was wearing masks, and all Tyson's appointments were done in the same room to minimize movement around the hospital.

Dr. Emilie has also referred Tyson to the Fontan clinic at SickKids which  specializes in post-Fontan care and complications. This clinic offers more expertise because they stay more up to date with Fontan research and they specifically see only single ventricle kids like Tyson.  This is very reassuring as well because we know he will be seen by doctors who know a lot about his particular physiology and there is less chance of something (like liver issues or PLE) slipping through the cracks. Dr Emilie is actually one of the physicians in the Fontan clinic so thankfully it won't involve any extra appointments for Tyson. She specializes in heart function and Fontan dysfunction so she assured us that Tyson is in very good hands with her.  She sounds amazing.  The one thing I noticed is that she gives a lot more information than our other cardiologist did, I found myself having to ask a lot fewer questions today :) 

We are home now. Tyson has to wear the holter monitor for 24 hours.  He has done this test before and it's always a bit of a challenge because he gets SO itchy from the tape and it's uncomfortable to sleep.  I fully expect him in our bedroom in the middle of the night. Thankfully it's only for one night! 

So while we do have some good news today, we have to wait till Tyson gets these other tests to find out if there's more going on.  For now, we rejoice that there doesn't seem to be a decline in the actual function of his heart and we will keep you updated as we hear more. 

An Extra Visit to SickKids

We will be making a trip to SickKids with Tyson next week on April 29^th.  He normally only sees his cardiologist annually and wasn't scheduled to see him until December 2020, but Tyson’s energy has been declining and he has some new, concerning symptoms that require further investigation and cannot wait until December.  He missed more days of school this year than he did last year, not because he was sick but because of nausea and headaches, generally just feeling tired and in his words, “I just feel so crappy.”  We’ve also noticed that normal everyday activities tire him out more easily, and he has more frequent periods of cyanosis with activity (his colour is more blue) his eyes are dark and tired looking and his oxygen levels are dropping slightly. He's also had some unusual issues with his bladder which we ran tests for and had a phone consult with his nephrologist (kidney doctor) but came up with nothing.

I've been procrastinating writing this update for a while because we've always wanted Tyson to be treated as normally as possible and especially don't want him singled out among his peers at school.  It's hard enough for him to have limitations because of his heart, we don't want anyone feeling pity for him and treating him differently. But since he's schooling at home and doesn't see anyone these days anyway, this is as good a time as any to update. 

Normally Tyson sees his cardiologist in the winter and his pediatrician in the spring.  We time it this way on purpose.  When we saw his pediatrician earlier in the month, Dr Murphy also confirmed that Tyson needs to have some more tests run.  He says that given the symptoms we’re describing and the fact that Tyson has been growing well lately (3 kg and 7cm in one year) he wonders if his left pulmonary artery and pulmonary veins which were problematic a few years ago might be not growing quite as quickly as the rest of his body.  The good news is he said his heart sounds the same as it did last year ( so I don't think he is suspecting heart failure at this point - you can usually hear that.) 

I'm guessing we won't have any immediate answers on the 29th because SickKids will likely send him for an MRI to gather clearer images, because Echos don’t give a very clear picture of the pulmonary veins, and he will need to have an MRI of his liver soon anyway because of wear and tear on his liver and something called “Fontan Associated Liver Disease” which he is being watched for.

This upcoming appointment has been weighing extra heavy on our minds, not only the fear of the unknown of what is happening with Tyson's heart, but also in light of  COVID-19.  We have done very well at keeping our family extremely safe and secluded and now we have to go into a hospital!  SickKids has some very tight restrictions in place and only one parent is allowed in the hospital building with Tyson.  Brian is coming with me but he will be waiting in the van (or if the weather is nice he will find a spot and sit in a lawnchair outside?)  Also, we normally move from room to room in the hospital for all his tests, and sit in all the waiting rooms, but they want to minimize movement within the hospital so he will have all his assessments and tests done in the same room.  He will be having an ECG, echo, holter monitor and a meeting with our new cardiologist, Dr. Emilie Jean-St-Michel (who we'll call Dr. Emilie from now on because that is way too hard to type ;) 

Please keep us in your prayers and pray this is nothing too serious,

Brian and Melissa 

Picture just for fun.  This is Brian helping Tyson with his schooling at home. 
Brian has only been home from work one day so far and he thought it was pretty neat to see all the kids working

Today We CELEBRATE

Today we CELEBRATE. We celebrate another year hospital-free and antibiotic-free. We celebrate our health. We celebrate our family. We celebrate the gift of doTERRA. But most of all, we celebrate God and all the things He is doing through our health and our family.
February is heart month, the month we raise awareness of Congenital Heart Defects, and the month we're blessed to celebrate another year hospital-free. Every February because of heart month, pictures of Tyson fill my page. But I would be remiss if I failed to give credit to the other beautiful humans in this picture.
So today, instead of another post solely about Tyson or CHD, we're taking a moment to celebrate ALL of our kids and the beautiful people they've become because of our journey with CHD.

We celebrate Braden, our oldest, who was just 7 years old when Tyson was born. You endured so much in the years that followed and we're forever grateful that God gave you to us first, so you could be strong for your younger siblings. You're strong, courageous and responsible beyond your years. Son, you're a rock and we're so proud of the man you've become. ⚓

To the beautiful girl at your side, Caroline, thank-you for being Braden's best friend. Thank you for listening when he needs an attentive ear, for lifting him up when he falls, and standing by him when he needs a friend. 💗

We celebrate Merrick, our second born. You didn't always understand what was going on when you were juggled back and forth from home to the hospital to Grandma + Grandpa's house. Despite the uncertainty, you were always so full of spunk and joy, dancing and bringing laughter with you wherever you went. Never stop smiling and making us laugh. You prove every day that laughter truly is the best medicine. 👏

We celebrate Kenya, our oldest daughter. You were only 2 when Tyson was born and poor girl didn't know if you were coming or going. At 2 1/2, you toilet trained yourself because I was too busy caring for your medically-fragile brother, proving right from the start that you're strong and independent. Your crazy sense of humour shows you're free-spirited and confident. 🙅‍♀️

Tyson, our brave heart warrior. You went through more in the first 2 years of your life than most people do in a lifetime. 3 open-heart surgeries, 5 cardiac catheterizations and numerous other pokes and procedures. Through it all, you've put a smile on your face, endured every trial with utmost courage, and stood firm in your faith. 🙏

Addisyn Faith, our youngest, born a few years after Tyson. You came into our lives during very stressful times, and you definitely lived up to your name because God 'added' so much to our 'faith' through you. As a baby you were easy-going and slept anywhere because we hauled you along everywhere we went, including medical appointments and hospital stays. Your strong will and determination make you an absolute joy 👸

Raising a child with congenital hearts defects is sometimes hard, being the sibling is probably harder, and being the CHD warrior is likely toughest of all. But more often than not, our family experiences indescribable joy. We wouldn't wish CHD on any family, but with God there's always a purpose in the pain.

#hospitalfree #antibioticsfree #sickkidshospital #giftoflife #blessings #joy #purejoy 

#blessedbeyondmeasure #chdaware #congenitalheartdefects #purposeinthepain