We’ve spent the last couple of days trying to get things moving. Oscar’s GI system is sluggish as is, apparently, scheduling in the PT department in this otherwise efficient, kind, skilled, and beautiful hospital. But today we got movement – most importantly PT and OT arrived, fitted Oscar for his protective brace, and got him out in the halls with a walker. He’s been lethargic and spacey, and I’ve taken to telling providers “this is 15% Oscar” and by now everyone knows he’s an avid hiker who also loves to swim, peloton, and do strength workouts. I see their expressions and expectations change when we share this. And that’s what happened out in the halls too – Oscar kept wanting to go farther, farther than most patients go on their first outing. “This is great, this is so fun,” he kept repeating. 

As the OT and PT started sharing all the precautions and strategies for helping Oscar walk, sit, brush his teeth, toilet, put on socks, as well as all the adaptive equipment we’ll need, I felt a familiar heavy weight settle on my shoulders. He’ll need a walker for at least two weeks, no inclines for four (sheesh, we live on a hill!), the brace with chin support for at least six, and of course no lifting, twisting, bending. I often feel like I’m in the 24^th mile of a marathon — exhausted, but the finish line in site — only to realize I am only at mile two. If someone were to ask me what it’s like to raise and support a child with special needs, that’s how I’d describe it. 

But at the same time, my interactions with today’s doctors boosted me. The hospitalist wanted to hear all about Oscar and the latest concerns. She was immediately supportive of my desire to dive into hypophosphatasia as a potential cause of Oscar’s mushy bones. I shared a journal article that outlined special labs that need to be drawn, and the profiles of a couple of bone endocrinologists I’d identified. She also invited me to her side of the desk to view Oscar’s abdominal x-rays to compare the gas patterns over the last couple of days. Together we devised a plan. And then when the GI team rounded this afternoon, I shared my concerns about his illeus and asked a few questions about his food intake, energy levels, and weight loss. Their expertise was really reassuring, and it was also so validating that the attending said, “You clearly have done the research and know your stuff. To be honest you don’t really need us.” I don’t think I’m any more researched than I was in the early days, but I do feel like the doctors I’m encountering lately are more receptive to parent input, at least when dealing with a rare, complicated case like Oscar.

Speaking of moving and elusive finish lines, we originally hoped Oscar would be discharged on Saturday, but it’s now looking like he’ll be here till Sunday or Monday. So it goes.