Celia Palmer, the executive director of the local Cystic Fibrosis Foundation branch, described to me what cystic fibrosis does to the lungs. She also talks about exciting developments in medicine that could save buddy’s life. I took her audio and made a little video. I’m really loving iMovie for iPhone these days.
I hate to bring this up, but doctors did tell me my son was born with a disease that would kill him.
I reject that, and I reject that the median age for survival is 38.
Science is advancing fast. It will cure my baby.
Call me an optimist — though few ever have — but that’s really how I feel. The Cystic Fibrosis Foundation has funded the science for decades. That’s why I’m making a Great Strides fundraising effort this May. Some of my relatives are doing the annual walk too. The walks take place all over the country. *Just as soon as I have a minute,* I’m getting that together. Hopefully, tonight.
My wonderful co-workers are also running in an Oklahoma City race – The Color Run – this May that donates proceeds to the CF Foundation. Much appreciated!
I met miss Palmer – together person – and her very with-it co-worker, fundraising director Melina Owen, at a lunch set up by lovely person Alyssa Siler. We talked fundraising ideas. It was amazing! I’ve been meaning to make a note of it for weeks.
Here they are:
I raced from work yesterday to take Eli to his monthly cystic fibrosis clinic visit. Since the lungs tend to do well during a baby’s first year of life, most of the focus is put on nutrition and weight gain. He’s doing great! Eli is just shy of 14 pounds. He’s in the 10th percentile for weight. That’s small, yes, but he is tall. Something like the 87th percentile for height. Tall and skinny. Sounds like someone I know, ie, Eli’d baby daddy. And by that I mean my husband, Mark.
The staff took his measurements and did a throat swab to check for bacteria that could harm the lungs.
Eli is involved in an observational study that monitors his development in the first year.
For this, I had to bring in a poo and pee sample. Messing with his poo became my forte after all the time he spent with ostemy bags, so why not?
I’ve got more to say but I’ve got to get ready for work!
Yesterday brought a bomb scare and then a few tornado touch downs in the great state of Oklahoma.
No telling what today will bring.
Here is Eli looking adorable at the CF clinic.