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Will you say that when you're 71???

Whoa! How wonderful!

You had such a rough start SaintOffeon. Its is wonderful to hear you're doing so well! Blessings.....

DJ - it sounds like you're doing really well! That's so good to hear!

I have boiled the Vortex now repeatedly with no problems. I do put it in the strainer basket of my "spaghetti pot" so it doesn't touch the bottom of the pot which sits directly on top of the burner. My spaghetti pot with strainer insert is used only for disinfecting nebbies, for those who are...

Call her pulmonologist. Chest pain on deep breathing is worth reporting. I'd take her in the check lung function if they will let you. Better to not need it, than miss it.

Ank do you drink supplements? I kept one with my kiddo all the time for constant sipping. Despite a meconium ileus and very low birth weight, he is a healthy weight and normal BMI. Find a high cal drink, or just make milkshakes and drink them all day long.....

Here the link for Funky's Blog.....(just go to the blog, go up to the address bar, highlight the address and hit copy, come to your thread and paste!) http://forum.cysticfibrosis.com/entries/455-Orkambi-preview And for those who would like, there is a button at the bottom of each blog for you...

All kids learn shortcuts to get what they want. They don't have to be taught to do the wrong things. They all have to be taught to do the right things. My then 7 year old forged her reading sheet and my signature to get a prize at school! I never would have thought!!!!! But she did. They...

Yes - absolutely, all are welcome to blog under their account as well. Just go to the top and click "Blog" and then New Post. There ya go. Or feel free to use AboveAll's other excellent suggestion for a new thread - something Like DjFunkys Orikambi Journey - and others can post questions and...

It would be great if both you and Saintoffeon could start a blog on that portion of our site! Then we could follow you without confusion with other posts. And perhaps you could update with a post periodically, even sharing a link to your blog. Wonderful. I'm looking forward to reading and...

Cam we're praying for you. What are the docs saying to you? Are you eligible for transplant if needed? You're in a good place. May Jesus wrap his arms around you and give you strength to fight and calm your fears.

Saintoffeon, I pray you have no problems getting your refill. If you do, let us know. There are many ways to push!

That's great to know rebjane. Thanks so much! I've taught min to use the spacer without a mask, but I wish I had known before!

Yes, AboveAll. It appears we're saying the same thing. You are a DF508 heterozygote if you have one copy of DF508. So, if you have one copy of DF508, regardless of your other mutation, you are apparently included in the target population for a triple combo.

Wow SaintOffeon. I'm with leecee. What happened to your efforts to get in with an approved CF Clinic. I know you did the search and found two good possibilities. Have you made an appointment with either of them? PLEASE!

Wonderful!

Generally the plastics cant be boiled because they will melt or distort. I can't really tell you what chemical changes take place, but I believe steaming is generally gentler on the plastics that can't be boiled. I used to use a Medela steam bag after washing them with soap and rinsing. I...

That is very interesting ruby. As a mom of a severe polyp sufferer, I have developed a pet theory that the sinuses are the main source of exacerbations for at least my little guy. Not a scientific trial, just Mom.

Windex, do you nebulizer albuterol or or use an inhaler? For my little guy, switching to the moist form of albuterol by nebulizing it made a noticeable difference.