Recent content by jonandlindsay

I've spoken at a couple of events, and basically I try to give others a picture of what life is like for us as a family dealing with CF and what it is like for Ella (my daughter) to have CF. I then focus on how far the foundation has come in the last 50 years, the incredible advances and things...

I've spoken at a couple of events, and basically I try to give others a picture of what life is like for us as a family dealing with CF and what it is like for Ella (my daughter) to have CF. I then focus on how far the foundation has come in the last 50 years, the incredible advances and things...

I've spoken at a couple of events, and basically I try to give others a picture of what life is like for us as a family dealing with CF and what it is like for Ella (my daughter) to have CF. I then focus on how far the foundation has come in the last 50 years, the incredible advances and things...

We just got the results from Ella's latest sputum culture and it came back showing she was growing something called "Klebsiella Ozaenae". Our nurse told us it is nothing to be concerned about... it is highly treatable by the same anitibiotics that are effective on Staph, so they see no need to...

Hi Amber - It's good to hear from you. I'm glad things went well for you in the hospital and that Vinnie is doing so much better. Take Care, ~ Lindsay Mom to Ella, 2 w/CF

Yeah! I'm so excited for you. What an accomplishment. Kids are so funny.... sometimes it just takes the silliest things to accomplish something we've agonized over for so long. Ella just started swallowing her enzymes a couple of weeks ago. Tell Caleb that Ella says "Way to go!!" ~Lindsay...

Hi Jody - Funny you should be going through this right now. Just a couple weeks ago Ella started showing signs of something.... had a little bit of a fever, was a little grumpy, got a stuffy nose one night out of the blue and then was stuffy/runny for days and days. It was strange because it...

There's always got to be something that holds everything up, isn't there? It can't ever just be cut and dried... here are your results on the day you expected them. We're wishing you the best. I remember when I made the poopy run... apparently the doctor forgot to forward the paperwork over...

There are times when I feel like I just can't take any more of it... this wasn't the life I had always imagined for myself.... this isn't the way things were supposed to work out. In the worst moments I have found myself questioning every decision I've made in my adult life... because...

I have a number of letters I can forward on to anyone who would like them. Just PM me with your email address and I'll forward things your way. I have a corporate sponsor letter my dad sent from his work and the letters I use in our letter-writing campaign that I'll gladly share with anyone...

No one has ever told us not to take them with milk when swallowing them. We were only told that when opening the capsules up and mixing the actual beads with other foods it needed to be in something non-dailry, like applesauce. But if they're in the capsules sitting in the stomach waiting to...

I just had to share this.... Ella, my not-yet-three-year-old daughter decided two days ago that she wanted to swallow her enzyme pills instead of eating them in her applesauce. She just picked one up, popped it into her mouth, drank some milk and swallowed it right down! We were so amazed...

Congratulations! What a great little family you've got! Good luck and keep us updated. ~ Lindsay Mom to Ella, 2-3/4 w/CF

Amber - I'm glad to hear things are going a little better for you. When Ella was a little younger and having a tough time with the enzymes I started letter her choose what food she wanted to take it in. We've also spent a lot of time explaining to her why her enzymes are important. Of...

Megan - When you say Dr. Warwick reccommends an hour of the Vest a day, is that an hour, continuously, or just an hour total over the course of two or three treatments? Thanks! ~ Lindsay Mom to Ella, 2-3/4 w/CF