One thing that having a chronic condition does is make you grow up quickly. When Ayrie is in the hospital he is as composed and mature as an adult. He may have been throwing tantrums the day before but the minute we board that plane to fly for Boston he is the epitome of good [...]
My friend, Julie Wight, just introduced me to the idea of narrative medicine. I am reading my first article and I think I might be hooked! Part of what interests me is the idea that mind and body are not separate. I know about my mind, my emotions, my fears… and there are some things I know [...]
This is such a journey! I just found this post on facebook from nine months ago. It was from Ayrie’s last surgery in Chicago, just before we moved to Minneapolis. It’s hard to believe all we’ve gone through in the last nine months both generally and health related. I actually took a stress quiz [...]
Here’s and excerpt from an email that I sent Ayrie’s surgeon this Sunday morning:
I am not sure how Ayrie is doing. This Monday will be 4 weeks since the date of his last surgery. This past week he has sounded as though he breathing is tight… I’m not sure how else to explain it. It’s as though he isn’t quite getting the full volume of air [...]
I was reading through my notebook for school and I found this note that I wrote to myself on November 2, 2009.
Ayrie had his surgery on 10/30/2009 and we got some good news… the funny things is that I’m just feeling good about it now, 4 days later. This isn’t the first time that there has been [...]
Ayrie looking at the Charles River out his hospital room window
Hello everyone. As you may have read, I started this blog because of the experiences I have had over the last two years since my son was diagnosed with the rare disease Juvenile-onset recurrent respiratory papillomatosis (JORRP). We currently fly to Boston for surgery because I learned, [...]
