New here .. Just wanted to say Hi!

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proudmom2lilCFer

New member
Hi everyone. I have made a few anonymous posts on here, but I finally decided to get a name and sign in. I just wanted to say hello to everyone. I have a 9 month old son who was diagnosed with CF on Februaty 14, 2005. He was 3 1/2 months old at the time. He was hospitalized with FTT and poor weight gain. He is 9 months old and he has finally hit 10 pounds which is wonderful, because 10 pounds was our goal for his first birthday. He has a g-tube and is on continuous feeds 22 hours a day. He takes Viokase powder enzymes. It is easiest to put through his tube as he doesn't take anything by mouth. His father is not a carrier of CF. Only I am. When he was concieved my egg did not form correctly, and he has more of my chromosomes than he does of his fathers. That is mainly why he is so small. He still wears newborn size clothes. But that's ok, because he hasn't outgrown anything yet. Anyway, I just wanted to say that everyone on here seems so wonderful, and I feel like I know you all. I feel blessed that I am able to be part of something so positive and supportive. I look forward to sharing many more stories with you all. My son's first birthday goal is now 13 pounds. Wish us luck!
 
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moni

New member
Hi,
I have a little girl who turned 1 in april. SHe has mild CF so far. What I want to tell you is that I know a girl who just turned 21 and she has CF. She told me that the reason they found out she had it (back then they didn't do the newborn screen in Massachusetts) was that she was only 14lbs at her 1 year birthday. She had a feeding tube, was pretty sick...she is now an EMT full time. She has a port-a-cath and you would never know it. So just a story to make you <img src="i/expressions/face-icon-small-smile.gif" border="0"> !
Take care, Monica
 
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VOOGIE

New member
Hi there, I'm fairly new to the forum too, but it's already become a massive source of support and advice, in a world that can be very frustrating for a family trying to deal and cope with cf. Very the best advice and information comes from others who are in the same or similar situation to you.
I have a 6 year old daughter(Harriet) who has cf, and she was diagnosed when she was 11 months old, after 5 months of coughing and vomiting, resulting in a failure to put on weight, and after much frustration at dealing with various general practitioners and paediatricians.
Harriet's had a few tough years for one reason or another, but it's been a big learning process. I think that the best thing that we can do as parents is to arm ourselves with as much knowledge as possible, and to do all that we can with that knowledge to protect our children.
Harriet's now doing very well, and is avery active, happy and lively little girl, despite all of the treatment that she has to put up with.
We are expecting our second child in 3 weeks time, and we haven't had any tests done, so obviously we are hoping and praying that the little one won't have cf.
I wish you and your family a very happy and love filled future, and I'm sure that the little one will hit that target weight.

God bless you and all of your loved ones always.
Greg.
 
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anonymous

New member
Hello! Welcome to the board! I am sure you could find lots of "weight-gain tips" here since many of deal/have delt with it! I have a 2 year old named Sydney, she has CF. She was diagnosed just after her first birthday and was barely on the charts then. She has gained a lot of the past year with the help of enzymes and an increase in calories. I hope your guy can make his goal weight! Look forward to "seeing" you on the board!!

Hugs,
Kelli (mom to Sydney 2 wcf)
<a target=new class=ftalternatingbarlinklarge href="http://members.tripod.com/sydneymyers-ivil/">http://members.tripod.com/sydneymyers-ivil/</a>
 
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proudmom2lilCFer

New member
Just a little update. Evan's dietician came to our home today and weighed him. He weighed in at 11 pounds 10 ounces. I couldn't believe it. I was going to be thrilled if he was 11 pounds. He was weigh last on the 26th of July and he was 10 pounds 10 ounces. I think my jaw hit the floor. I think we will hit the 1 year mark no problem. Horray for Evan!!!
 
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anonymous

New member
Welcome to the board. What a great day that your son has gained weight! (you should celebrate <img src="i/expressions/face-icon-small-smile.gif" border="0">). My son is 5 with CF and doing just great. At first, the diagnosis can feel quite overwhelming, but we now deal with it just like any other routine. My son starts kindergarten this fall and he is the joy of our lives. Thanks for your introduction. We look forward to getting to know you!

Carey
 
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