Living in isolation
This is Étienne’s mom writing in. Thank you so much for all of your support! We are deeply touched. Your messages of hope have helped us feel less alone in this journey. It means so much to us especially because we’ve been living in isolation for the past 7 months.
Isolation is how we care for and protect Étienne from catching an infection. We don’t take him to anywhere except to the isolation unit at CHEO for his appointments twice a week. We take him outside for stroller walks, but we can’t go anywhere crowded or through forests where there is a lot of decay and mold. At home, we have very limited visitors, and we take many many precautions!
We wash our hands frequently, use a lot of hand sanitizer and wipe down the surfaces of our home with disinfecting wipes a few times a day. Every time we want to touch Étienne, we have to wash our hands or use hand sanitizer first. We have had our hands crack and bleed from washing so much. We cannot kiss our child, at least not right now. We just can’t risk getting him sick.
But after 7 months of living in isolation, I think we are coping well with our new routines. Although it can feel like our life is on hold, it really isn’t. We love the time that we get to spend with our child. We are so grateful for newborn screening. His diagnosis is a true blessing. We love watching him grow and explore the world. Even if it is a small world, it is quite big for a new baby!
Over the weekend, two of Étienne’s bottom teeth came in, so he’s been crankier than usual. There might even be a third tooth coming in! Étienne is well and continues to be free of fevers and infections. Thank you for keeping our little superstar in your thoughts and prayers.