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UPDATE ON CONTEST: PLEASE SHARE!First of all we want to give a huge heartfelt THANK YOU to ALL who supported us during the "No Roof Left Behind" contest.We received over 1400 votes from all over the world. The love we experienced was overwhelming. I laughed & cried many times.
I got a phone...
We are one of the "No Roof Left Behind" finalists in a contest to win a new much needed roof. Our 4 year old daughter has Cystic Fibrosis and is constantly getting sick- She has Pseudomonas for the third time. We would appreciate any votes & shares we can get. Please click the link & read our...
I think your post is great. Good questions. I am a mother of a 3 yr old little girl with CF. She is just beginning her journey, but I appreciate what you wrote, knowing she will experience the same situations when she is old enough for dates. (Maybe like 40... just kidding) She told you because...
Thank you, my little 3 yr old with CF wakes up screaming because of pain in her knee. We have had x-rays and they show nothing, thought maybe it was dehydration.
I live near Tampa, we go to All Childrens Hospitals CF center, in St. Pete, they are excellent. They are connected with the CF center in Tampa, for adults, so I assume they are also excellent. :)
If it is at all plant allergy related get yourself some local honey, the bees pollinate the local plants & give you an immunity to those plants by eating about 1 tablespoon a day for about a month, in tea on food or plain. You will see a big difference in about a month & even bigger difference...
My name is Kim, I am 40, I have a daughter almost 3 years old with CF DF508 & G542X <--- a stop mutation gene. She was diagnosed near birth, has had 2 intestional surgeries and a g-tube placement prior to leaving the NICU for the first time @ 3 months. She is doing well now. Nice to meet you!!!
One of my daughters CF Dr.s says it's okay to give her Benadryl (for allergies) every once in a while, the other one says No never take it., they are afraid if she gets it too much it would dry her out & make it hard to cough up the mucus building in her lungs. I do give it to her when she...
I know the beach is good for CF'ers because of the salt in the air & water. So I agree with the others it is not the salt but the maintenance or lack there of that would create a problem. But I would talk to your CF clinic, just in case, there is any reason they would disagree. Agree again, no...
As a Mama of a two yr old with CF, thank you for the inspiration. i am so grateful for people who share their surviving CF stories, it helps to encourage us scared parents. God Bless you.
I am no expert but I do attend the CF family night conferences yearly, and clinic with my daughter on a regular basis, and I do believe they find new mutations every year. I believe a lot of them are found because of a higher awareness of CF. Cases that may have been improperly diagnosed in the...
I believe most hospitals do sweat testing, Try and find a CF center near you, and get the genes sequenced, If you carry 2 copies of a CF gene you have it. I would try to go to a CF center if possible they understand Cf much better than an average Dr. Good luck to you.
Do you have or need any books on CF? I can try & get my hands on some. My heart breaks for you. The vests run about $16000.00 but there are places coming out with refurbished ones. I can get you the websites if you'd like. Keep your child away from fountains, hot tubs, green houses, standing...
My daughter has Deltaf508 and g542x ( a stop mutation) the stop mutation does not create the protein in the lungs to spark the cilia hairs to move & remove mucus. The Deltaf508 gene created the protein but it is misshapen & can not get through to the cilia hairs. They are working really hard to...
Unless otherwise instructed by her CF Dr.s, I would keep doing what you are doing. She is gaining, praise God. Breast milk is the best for your little CF'er it gives her your antibodies to help protect her from infection. But I'm sure you already knew that. (FART2)My daughter could not eat for...
I do not know the answer to your question, I am sorry. But I have heard of these "salt caves or salt rooms" popping up everywhere where people with lung issues can go and sit to breath the salt air. From what I have read it is working wonders. Here is a news article on the one in Orlando. I'm...
My 2 1/2 Daughter has Df508 & g542X - DF508 is the most common, not necessarily the the worst. There are worse- my daughters is worse. They are working really hard for a fix for the lung problems. My daughter spent the first 3 months of her life in NICU. Two major intestinal surgeries and a...
Hope this helps.
You're doing great if you can get her to swallow them.(PILLS) I have a 2 1/2 yr old also. She likes to chew them --- Yeiks. But, I understand, I have the same problem with the applesauce from time to time. You don't have to use applesauce, it was used in the beginning because...
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