ourf508life.wordpress.com
So You’ve Found Out Your Unborn Baby Has Cystic Fibrosis. | Our ΔF508 Life
https://ourf508life.wordpress.com/2014/07/14/so-youve-found-out-your-unborn-baby-has-cystic-fibrosis
Our ΔF508 Life. Our family, living with CF. So You’ve Found Out Your Unborn Baby Has Cystic Fibrosis. July 14, 2014. Or that you and your partner both carry the cystic fibrosis gene (or I should say one of the many genes that can cause CF). I’ve thought a lot about this problem since Alma was born. What does it mean to know that your child will, or that your child might, have cystic fibrosis? It’s something that sometimes gets framed as an “ impossible choice. So What can I contribute instead. Ok What I ...
ourf508life.wordpress.com
July | 2014 | Our ΔF508 Life
https://ourf508life.wordpress.com/2014/07
Our ΔF508 Life. Our family, living with CF. Monthly Archives: July 2014. July 14, 2014. So You’ve Found Out Your Unborn Baby Has Cystic Fibrosis. Or that you and your partner both carry the cystic fibrosis gene (or I should say one of the many genes that can cause CF). I’ve thought a lot about this problem since Alma was born. What does it mean to know that your child will, or that your child might, have cystic fibrosis? It’s something that sometimes gets framed as an “ impossible choice. Ok What I can s...
ourf508life.wordpress.com
Our ΔF508 Life | Our family, living with CF | Page 2
https://ourf508life.wordpress.com/page/2
Our ΔF508 Life. Our family, living with CF. September 10, 2013. Today has been a hard day. Today I found out that a woman with CF who I know died. I didn’t know her well at all, and only knew her because she contacted a friend of mine when Alma was diagnosed. She was very kind and told me in that first awful week that there was a lot of hope for Alma. I didn’t hear much from her after that, though I saw her occasional posts on Facebook. And now she’s gone. What is the next exciting installment? When I se...
ourf508life.wordpress.com
Dramatic Irony | Our ΔF508 Life
https://ourf508life.wordpress.com/2013/10/01/dramatic-irony
Our ΔF508 Life. Our family, living with CF. October 1, 2013. Alma turned one last Friday. One! It’s coming, it’s really really bad and it’s coming for you, you just don’t know it. That I’d fail at a job? That a relationship might end? That someday, somehow I might lose someone when they were old and gray and had lived a long good life? Stupid. What stupid, ordinary things to worry about. What stupid ordinary things that character was mooning about on that stage before stupid fake scenery. Enter your comm...
ourf508life.wordpress.com
The Wilderness | Our ΔF508 Life
https://ourf508life.wordpress.com/2014/02/16/the-wilderness
Our ΔF508 Life. Our family, living with CF. February 16, 2014. I’m reading this book Zealot right now. It’s about the historical period that Jesus lived in. It’s really engaging and entertaining and, for someone who doesn’t know much about the life of Jesus, it’s been an easy-to-digest quick education. Now I too can speak authoritatively on what Jesus really taught. Kidding. How did we get to this place where I can say with a lot of confidence that I think my daughter will live a normal life, that we wil...
ourf508life.wordpress.com
December | 2013 | Our ΔF508 Life
https://ourf508life.wordpress.com/2013/12
Our ΔF508 Life. Our family, living with CF. Monthly Archives: December 2013. December 30, 2013. In the New Year. To say that there is a lot of expectation built up for this year is an understatement. Sometimes I wonder how we will manage this year. How do you do your day to day life knowing that things this dramatic, this life changing may be around the corner. Or, instead, a great disappointment. Become a doctor, a mother. Travel the world. This is what my life as a parent of a child with CF is:. Lookin...
ourf508life.wordpress.com
September | 2013 | Our ΔF508 Life
https://ourf508life.wordpress.com/2013/09
Our ΔF508 Life. Our family, living with CF. Monthly Archives: September 2013. September 10, 2013. Today has been a hard day. Today I found out that a woman with CF who I know died. I didn’t know her well at all, and only knew her because she contacted a friend of mine when Alma was diagnosed. She was very kind and told me in that first awful week that there was a lot of hope for Alma. I didn’t hear much from her after that, though I saw her occasional posts on Facebook. And now she’s gone. So You’v...
ourf508life.wordpress.com
August | 2013 | Our ΔF508 Life
https://ourf508life.wordpress.com/2013/08
Our ΔF508 Life. Our family, living with CF. Monthly Archives: August 2013. August 29, 2013. Mother and Baby Are Both Healthy. When I see these announcements now for friends or family, I feel a little pang in my heart. I know that for most people, it’s true. Their baby is healthy. This is not something I’ve ever been able to rest easy in, or take for granted. I wonder often how I can help Alma grow up as someone with a chronic condition. It can be such a helpless feeling, knowing your child has this.
ourf508life.wordpress.com
From the Trenches | Our ΔF508 Life
https://ourf508life.wordpress.com/2013/10/03/from-the-trenches
Our ΔF508 Life. Our family, living with CF. October 3, 2013. What follows is a first hand account of someone who is enrolled in the phase 3 vx-809 trials. He’s ddf508. I suspect this blog will get taken down at some point so I thought I’d copy and paste it here just in case. I don’t know this guy, can’t vouch for the accuracy of any of it. But it makes me hope…. Http:/ colindshots.blogspot.com/. By the middle of the week I started feeling very tired like I was getting a cold. I was resting lots, eati...
ourf508life.wordpress.com
May | 2013 | Our ΔF508 Life
https://ourf508life.wordpress.com/2013/05
Our ΔF508 Life. Our family, living with CF. Monthly Archives: May 2013. May 29, 2013. We had a clinic visit today. It went well. Alma is at the 73 (or 78? I can’t remember) percentile for her weight to height. No respiratory symptoms This is a common story. If you are new to this, if you have a tiny little baby whose age you can still count in days, who was just diagnosed with CF, know that this is a common story. May 24, 2013. May 23, 2013. I think the approach for now is to talk to them on an as-needed...
