Infusions, infusions, infusions!
As of April 2023, Simon has had over 220 enzyme infusions and when I do the quick math, that’s almost 1000 hours of his life! While it’s become a routine part of our new normal, the impact that these infusions have on Simon’s life and our whole family is wildly significant. We used to dream of taking sabbaticals from work and traveling the globe with our kids for months at a time – but now our reality is that we can’t travel for more than a week without jeopardizing Simon’s health by missing an infusion. When we go away for a week of vacation, the following week Simon has to get two infusions to catch up – and they can’t be more frequent than every 5 days . . . so you can image the scheduling chaos that it creates. If we travel for more than 1 week, Simon misses an infusion . . . not something we want to do for a drug that sustains his quality of life!
Simon also has to miss one day of school every week – which is tough on him and also very hard on Isabel who has to go to school without her best bud. I work from home on his infusion days and luckily have such a supportive team at work that I am able to take on a lighter meeting load on infusion days so that I can always put Simon first. The days are exhausting though as we juggle Simon’s needs (which can sometimes include allergic reactions), the demands of work and all the other logistics of daily life with small kids and a puppy!
As we continue to share stories over time on this blog, we’ll certainly be posting more about what infusion days look like, but to start, I’ve always wanted to share photos from the 6 months we spent in 2020 + 2021 traveling back and forth to Vancouver every week – spending 8-10 hours in the Medical Day Unit at BC Children’s hospital before dashing to catch the ferry in time to get home to see Spencer and Isabel. This assortment of photos is a walk down memory lane – and so fun to see all the visitors who made time to pop by and support Simon through the long days.
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