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CF Mom administrator

Sandy - posted on 01/31/2010 ( 2 moms have responded )

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Hi all, I just wanted to drop you all a line to say hello. I am not very active on the Cystic Fibrosis Moms. I am sorry for that but you know life is busy. I created this group for you all so you could ask each other questions and get support. You are welscome to send me private messages if you need to.

-A little about me. I am a wife and a mom of 2. Cassi is 11-1/2 nCF. Collin is 7-1/2. He was diagnosed (dx) with CF @ 16 months old after 10 months of me fighting and going to several drs to figure out whats wrong. Then @ 4-1/2 after telling the drs something is wrong he was dx'ed with Cirrhosis of the liver.

Collins lungs are in great shape there is no mucus. He does grow Pseudomonas A and Staph A sometimes. His main problems is sinuses. When he gets sick its sinus problems. He is 90% with growth.

I want every one to feel welcomed here. All I ask is to be kind and sinsative to peoples feelings.

Thanks Sandy

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2 Comments

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Lanor - posted on 02/07/2011

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Hello Sandy. My name is Lanor. I have 4 daughters. My first three are normal active girls. Adaira is 4 1/2 months. My husband and I are grateful that that we live in a state that does newborn screenings. Adaira has been diagnosed with 621+1G->T, p.Leu818TrpfsX3. She is doing well he height is at 70%, her weight is at 50%. But we had a visit last week due to a fever. And her weight did flatten out.

I am hoping this site might give me the support and the understanding that I am not the only mom with a daughter with CF.

Rachel - posted on 01/31/2010

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Hey Sandy thanks for the mail :) i think CF moms is great. it another way to meet more people who know like you exactly what we r going through with our kids. through no fault of your own , when my daughter Katie was first diagnosed this was the first place i came to, to get some help but noone replyed so i felt a little disapointed, But as time went by slowly i got a responce n have met n made some great friends to share our experiences with n i realy hope we can 2?. Im realy sorry if iv done or said anything to upset you or anyone else no harm was intended. . Im just a mom on a mission at the moment doing as much as i can to bring awareness n hopefully some funds for a charity in scotland who assist families living with CF, also im helping a friend join the worlds CF community together so hopefully one day there will be a woldwide walk that coinsides with awareness. I think cystic moms is a fab place n what you have achived is fantastic i wish i had you knowledge. Hope 2 keep intouch and you n your family r well xxxx

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