It’s been a week. We wait. We watch. We photograph. We talk. We find ways to connect with other kids, families, child life specialists, medical staff and researchers to continue to make the best of what life hands us.
I don’t know about your family, but it always seems to me that we are chugging along for a while with no medical appointments and then they hit us all at once.
Last week, began the all at once wave.
It started out on March 30 with a trip in to Calgary to see Kane’s paediatric dentist. Nothing too scary came out of that one, not even a single cavity, though we know there will be orthodontics in Kane’s future.
The next day our family headed up to Edmonton for Kane’s pre-op appointment at the Stollery Children’s Hospital. Kane was born with a cupped ear and a mole next to his nose. From early on we knew we could choose to get his ear pinned and his mole removed but that doesn’t mean it was an easy decision. One of the things that I found hard about this particular surgery is that it’s aesthetic. Unlike heart surgery, this procedure is not about survival, it has nothing to do with his heart function. It has everything to do with reducing the number of things that make him look different. And I struggled with that.
When we first found out Kane’s surgery date with his plastic surgeon had been re-scheduled (due to heart surgery and covid this one has been scheduled a few different times), we told Kane that he was going to have an appointment about his ear. Kane immediately asked if he would need a needle in his ear. Needles are a sticking point and we didn’t want him focusing on that for a long time leading up to it, so we let the fact that it was a surgery go and focused on choosing a theme room at Fantasyland hotel for a mini vacation instead.
A couple weeks ahead of time Harrison and I decided to start prepping Kane and Maverick. When we told them the Edmonton appointment was for a surgery Kane wasn’t overly concerned, not even about the needles. He asked what the surgery was for and it was actually Mav who explained to him that his two ears look different. Kane also asked whether the doctor would “use a hunting knife” to get the mole out. Ummm nope. But that gave us the opportunity to remind Kane he can always ask his doctors any questions that he has. That self advocacy piece of teaching kids to ask medical staff questions is really important to us.
Kane’s surgery went well. We stayed one more night in Edmonton and then headed home for Easter weekend. This week we have a follow up appointment with Kane’s plastic surgeon and his usual bi-annual cardiology appointment including and ECG and echo. Kane’s Calgary cardiologist is just back from maternity leave and the last time we saw her she told us that the ridge in Kane’s heart is forming again and that likely he will need surgery. Her hope is it won’t be until he’s a teenager but every appointment brings new challenges. So we wait and watch.
And while we wait we continue to look for opportunities to give back. One way to do that is by participating in research. Throughout the years our family has been involved in a number of research studies and projects, ranging from our NICU experiences to speech development, from play to cardiology.
Recently, I participated in the Family Engagement in Research certificate program, a collaborative initiative between McMaster University, CanChild and Kid’s Brain Health Network. I worked with researchers and families from across Canada to gain a clearer understanding of what family engagement in research looks like. The goal of my group’s final project, which is linked below, was to share our stories of how and why we became involved in research, as well as to promote why it is important for families to have a seat at the table in research and just how they can do that.
In this episode…
0:35 Who’s who in the conversation
2:35 What is Family Engagement in Research (FER)?
3:03 How we got involved in research
9:04 Advice for new families and researchers
13:28 Why stay involved?
18:00 How can families get involved in research?
If you are a family member or researcher interested in learning more about the course head over to Canchild’s website, sign up for the FER newsletter or join the conversation over on Twitter.