I went to a Parent Advisory Board at Amplatz last night. It’s the first time that I ever pulled into the parking garage and had a hitch in my breath. The hitch that said, “I hate this garage”.
Nothing personal about Amplatz Parking Garage. It’s actually a brand new facility that opened a couple of weeks after Owen as born. What I really hate is what the garage represents. Those times when Owen was admitted when we’d wearily pull into that garage night after night after night. 230 nights worth.
That feeling of dread was palpable, but at the same time, it felt really far away. It then occurred to me, he’s done it. It’s been a year. Technically, he spent a night in the hospital in October, but it was less than 24 hours so is only considered “observation” not an admittance (that’s what the Ped says, so I’m sticking with it).
I never thought it possible. After spending 230 days of his first 53 weeks in the hospital, can it be that he has gone an entire year?
I often see or hear people say, “My son was born at X weeks and only Y pounds, but today he is a happy and healthy Z year-old”. I’ve never been able to say that. It’s pretty hard to call a child who is oxygen dependent “healthy”.
But you know? He’s almost there.
In his last hospital stay, Owen missed a clinic appointment with surgery for his g-tube change, so his surgeon came to the PICU to do the change and train me how to do it. He asked “why is he here”? I explained that it was MORE respiratory issues and the surgeon looked so confident when he said, “This will get better.” He knew me well enough to know my look said I didn’t believe him and he looked me in the eye with the arrogance of a surgeon and said, “it will”.
And you know? It has. Owen has not been on oral steroids since Christmas. Not one dose of prednisone in 2013. Not one. Amazing. I actually don’t even have any in the house right now; the bottle we kept on hand has expired.
Of course, because of my battle with the jinx, this disussion has me a little on edge, but it’s important to celebrate. Owen deserves to be celebrated for how far he has come.
Owen does still have health concerns and sees lots of specialists, but the first year of his life the focus was on keeping him alive. The second year we got to focus less on health and more on development and look how far he’s come.
He loves saying words!
He’s walking with a walker that he just got on Tuesday (video from day 1)!
It’s kind of hard to believe that this guy
Is now this guy
I’m still not sure I’d say Owen is Happy AND Healthy, but he’s definitely happy and getting closer and closer to healthy.
Oh, and here’s Owen’s message to the fellow two-year-olds that see him at school and say, “Look at the baby”…