Broken Glass

I know this update is long overdue, its been two weeks since our trip to Sick Kids and we’ve had more treatment days at London Children’s Hospital since then. So I am sorry for the radio silence, things have been a little bit busy and I haven’t had a moment to do an update.

When we were at Sick kids we were there to reconnect with the team and to get updates on genetics and an overall what’s next. The part that we fear the most right now is the progression of the lung disease, we were scheduled for a pulmonary function test and follow up CT. Daniel (as usual) rocked the CT – I stood close by as I watched him go into a tube with his hands above his head and we both listened for instructions as to when he needed to breathe and when he needed to hold his breath. I would count and repeat the instructions to him as I watched him struggling to hear with the whirring of the machine around him.

Later, We sat in a room with the Respirologist, she asked how we were doing and then Daniel asked the question we were all thinking “can I see my lungs?” With a gentle smile, she pulled up her computer screen and showed us the photos of the test he had just done. She pointed out to him the top of his airways and all the parts of his lungs. “Here” she explained “is where you can see the damage and what looks like broken glass or scarring on the lungs” “without the full report from the radiologist we can’t know for sure but from what I can see there is not a large amount of progression from the last test” I realized in that moment, I had been holding my breathe; and counting down instinctively just as he had in that test.

Breathing is something so natural, something we do without thinking and I felt every second of that breathe as my body released it. What an amazing relief. There is so much that is uncertain and yet what is certain is that despite the brokenness, we can see something beautiful; and despite the fear and the pain, there is peace. Today he had treatment, and for the first time in a long time he has no joint inflammation. He still seems to have some pain but his joints look “great” his doctor said. We are going to slowly reduce the steroids again, and we are so thankful for answered prayers.

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