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questions
1129 Views ● 4 Comments
Tips and Tricks
Our family has started the "Friends of Cystic Fibrosis" a 501(c) 3 organization that raises money for CF research and donates to CFF. Does anyone else have local fundraising and what do you do?

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questions
1022 Views ● 9 Comments
Cystic Fibrosis
I just have been thinking about some of the great things and memories I have that came from having CF. Most of my fondest memories as a child came from CF Camp in Utah.  I discovered myself and most of my talents and intersests at camp.  It was at camp that I fell in love with swimming,...

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questions
912 Views ● 6 Comments
Cystic Fibrosis
So I've never actually written a blog before. I use a journal probably a little too much but putting it all out there on the internet has never really appealed much to me. I want something tangible that I can have for forever...but I'm willing to give it a try :) I don't really ev...

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questions
1065 Views ● 5 Comments
Research
I just wanted to share with everyone... My dad (Ethan's grandpa) is currently a coach for Grand Valley State University's swim team.  We did a walk back in the fall and my father emailed all his college coaching friends.  From this he was able to raise about 2000 dollars!  ...

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questions
878 Views ● 2 Comments
Lifestyle
Well, Today I had to wake up sort of early lol.  I had to be in the office at 11.  So I do my normal routine, wake up after the alarm clock and cell phone alarm goes on and off on and off four to five times.  Either way it works for me, I get the shower, then the CF meds and S...

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questions
799 Views ● 8 Comments
Cystic Fibrosis
I had my first visit today with the Las Vegas clinic... something major for me, since I've never seen anyone for my CF except for the doctors at OHSU. First impressions? I'm in good hands. It was a long visit, but I talked to the nutritionist, social worker, nurse, RT, and doctor.  ...

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questions
724 Views ● 2 Comments
Cystic Fibrosis
  i am a mother to a wonderful baby boy that has cystic fibrosis.His name Wesley Matthew. when he was born he had no problems looked and acted like any normal newborn, he weighted 6 lbs 15oz. but when we would try to feed him he would spit up all of his milk. We tried all kinds of differ...

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questions
765 Views ● 13 Comments
Cystic Fibrosis
I am always surprised when I talk to other CFers and I find out they did not get a "Make-A-Wish".  If anyone is under the age 18 with CF or if you have a child under 18 with CF please, look into the Make a Wish foundation! It is an amazing program.  I would also encourage anyo...

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questions
701 Views ● 3 Comments
Hospital Stays
Since this is only my second blog...sorry if it's a bit random. I'm used to writing in journal where nobody cares and I can jump topics every sentence if I want. Not that I can't on here but I feel it should be semi-constrained..... So between my idea yesterday for a blog about wh...

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questions
786 Views ● 0 Comments
Cystic Fibrosis
I am so glad that 2009 has passed & hopefully 2010 will bring as much joy & happiness then 2009.  Jenessa has been switched to petamen jr. which is awesome & her weight to length is in the 50%.we always had a trouble with her weight. When Jenessa was born we did not have any clue...

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questions
972 Views ● 7 Comments
Food and Nutrition
So this might turn into a mini rant so if you read this whole post I am quite impressed. Today was a baaaad clinic visit. Medically, mentally, and physically (well, for Luke anyways). We have been keeping a close eye on Luke's weight and I know that I have mentioned it before on here. I ...

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