Breathe Easy Nebulizer Mask Holder

Breathe Easy Nebulizer Mask Holder
Breathe Easy Nebulizer Mask Holder

All CF parents out there, you must check out this product: The Breathe Easy Nebulizer Mask Holder

What a great device! Julie found this online and ordered one. Order total = $31.50 which includes shipping. The device even came with an extra “Bubbles the Fish Pediatric Aerosol Mask”, which is a bonus so that we can rotate masks more often.

To use it, all you do is put the strap on your child’s head, adjust the fish mask on the face and then attach the nebulizer to the front of the mask. Easy as 1 2 3.

The product creator, Melissa, was motivated to make this mask holder for a friend’s child, who has CF. According to Melissa, “This mask holder was created for a friend of mine to help with her son’s breathing treatments. Her little boy has Cystic Fibrosis and must have multiple breathing treatments every day. She struggled with getting the nebulizer mask, with its flimsy elastic strap, to stay on his head securely.”

And, as an added bonus, Melissa will also donate a portion of any purchase referred by Breathing As A Family to Cystic Fibrosis Canada! Simply mention that you heard about this here (and mention Team Katie) during the checkout process (there is a spot for additional comments on Etsy when you place your order) and Melissa will do the rest.

Thanks to Melissa (mktdesigns on Etsy) for providing such a great product.

Please pass this along to any other CF families that you know!

Todd

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I’m writing a book – “Cystic Diagnosis”

Katie, Noah & Riley - Aug 2010
Katie, Noah & Riley - Aug 2010

We found out that our daughter Katie had CF on September 30 2008. Katie was 17 months old at the time. We were devastated. We were afraid. We were concerned for our child. We worried if our other child might have CF. We wondered what the future would bring. We wondered if we would have any more children. We had a million questions.

OVer time, we got on our feet again. We spent time at the CF clinic. We met with other CF parents. We researched the disease. We spent lots of time on the internet. We read books. We watched movies. And eventually, we got to the point where we felt like we understood what we were dealing with.

To seasoned CF veterans, I’m sure we’re still “rookies”. But, we are insiders nonetheless. And we are recent insiders. Thus, we have a unique perspective and a unique chance to help others.

I’m compiling my notes into what I envision to be a book that will provide an overview of our first year living with CF. It will share our personal story. It will share resources that we’ve found helpful. It’ll explain how we’ve learned to navigate the health care system and how to optimize the help that is available to CF patients and their families.

Ideally, I’d like to provide a handbook that will comfort other families that have just learned that a loved one has cystic fibrosis. And, I’d like to provide context for those that are on the periphery of cystic fibrosis – friends and extended family members of those affected by CF.

Who knows… maybe I’m crazy. Maybe I’m overly ambitious. But, I looked high and low for such a book when Katie was first diagnosed, and, I couldn’t’ find that book. If I could provide something even remotely helpful, then I will have accomplished my goal.

Here’s the basic outline of the book that I’m thinking of writing:

1. Our Story – Intro
2. Practical Matters – Our first clinic visit
3. Lifestyle changes:
* Routine
* Family priorities
* NO SMOKING!
4. Existential angst (optonal philosophy chapter)
5. A depressing reading list
6. Hope:
* Medical research
* Community / Support groups
* The Internet Community
7. Charity work
8. Carrying on & Living life
9. One year on – where we’re at
10. Ethics:
* Having more children after a CF diagnosis
* Universal health care
* Etc
11. References:
* Books
* Websites
* Charities
* Additional resources

What do you think? Is there a need for such a book? Would you find it helpful? Am I missing anything in the basic outline above? Let me know… The more feedback I get, the better the end product.

Thanks,

Todd

Breathe by Matt Scales – song lyrics

Our Team Katie video for 2010 features the song Breathe, from Matt Scales, a CF patient who died from the disease in 2007 at 28 years of age.

Matt’s personal struggle with CF made the song especially poignant, given his intimacy with the disease.

You can view more information about Matt and you can also download an mp3 copy of the song as well as an mp4 video of the song at this URL: http://www.cfvoice.com/info/breathe/index.jsp

Here are the lyrics to the song, Breathe:

Breathe
By Matt Scales
Through my eyes
I see you
Staring at me
All the time.
So I wish
That it would leave
My body.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
So won’t you help me, please?
Chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you.
Then I think that
I’m all right
But it keeps changin’
Like the weather.
It’s not up to me
How I feel
How I feel
Inside.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me, please?
Chorus:
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you.
I wish I could breathe
Like you, oh, breathe
I know the answer’s out there.
Won’t you help me…please?
Cause one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
Then one day I’ll breathe
I’ll breathe, I’ll breathe
I’ll breathe like you.
I see the future.
It seems so clear.
That one day I’ll breathe like you…like you.

Original “Breathe” Composition © 2001 Matt Scales and Barnaby Pinny.