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Thread: new moms with cf newborns

  1. #1

    new moms with cf newborns

    Our son Lincoln is 3 months old. I would love to just connect with other moms of cf newborns and talk about what the exerience has been like. Even moms of older kids and what to expect or how to handle things that are.coming.

  2. #2
    handle it step by step and live every moment to the fullest... make dreams and make them come true...my dauhgter is 7 - tommorroe she dances in a muscial school , performs and is trying out to get to the ntaional balet school.. This may not be your childs dream - but yiou'll have others. The medicine is gpoing so fast that I see huge changes in the last 7 years wince we heard of cf...and I see my child being strong and healthy...newborn porblems - we had none..and wish yoy the same
    Mom to Joanna 9 / cf and Zuzanna 6 / no cf
    http://asik-ak.blogspot.com/

  3. #3
    Super Moderator
    Join Date
    Mar 2012
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    Hello mom! Is there anything specific that would be helpful to know? I know the first year I didn't do much be try to keep up with everything while figuring out how to cope. Learned a lot of "tricks" in the time to make things easier. And learned a lot about the research that is going at warp speed to get us a "cure." Do you know what mutations (and classes) of mutations Lincoln has? Take care and big mommy hugs.

  4. #4
    Super Moderator
    Join Date
    Apr 2006
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    20,950
    Ds is 11, but I remember feeling overwhelmed at times with what ifs. Didn't help that he was the first infant in our area diagnosed in years, so other moms shared horror stories about hospitalizations. I was terrified! That said...we took things one step at a time. Got into a routine with cpt to keep his lungs healthy. He went to daycare and was actually the healthiest kid there. I'd worry when they warned about what was going around and that first year he maybe had an ear infection, sinus infection and a bout of stomach flu. Today he's active in in school, sports...we've travelled... Important to have balance, be proactive, be vigilant and still lead a normal life.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  5. #5
    Jeannie85
    Guest
    My daughter is 1 9 months old. I am willing to talk, share stories, concerns, worries......don't hesitate to ask or talk about anything. I found that coming to this forum is very helpful and all of the people are so genuine and knowledgeable.

  6. #6
    Hi Erica!

    My little one is 11 weeks now. We are in the diagnosis stage right now--not sure if she has CF or not. She has two mutations; she has an intermediate sweat test (33 and 31) but has no symptoms so we just don't know yet. We got the phone call about her newborn screening at 20 days old; it was so nerve wracking and there was lots of tears involved. When did you get the diagnosis? Does he show symptoms?

    So glad you're here!
    Janet

    Daughter was born 8/28/2014 and diagnosed with CRMS for now; mutations are DelF508 and I1366T

  7. #7
    Thanks everyone for all the responses! So great to hear from other moms, makes everyhting seem so much more managable! We were diagnosed at 1 week and no symptoms or sickness yet, so far so good we are trying to get into routines with everyhting and I stay at home so it makes things a lil easier as far as schedules go. Our specialst think that there are some very promisng drugs in the works that he will be a candiate for so always keeping hope for that and a cure one day!

  8. #8
    Hello Erica,

    Enjoy your son and as time goes on this will be become just a part of your /his life ( at the start we were so overwhelmed I was consumed be this disease..)..I have a 5 year old who is happy healthy girl..but I remember the "unknown" at the start was tough..it will get better ...certainly did for us ..

    also i LOVED this product for carrying around applesauce when he gets to that stage http://www.buybuybaby.com/store/prod...FYuVfgodGqYACA

    Have a great holiday - there are so many positive developments for Cf'ers !!

  9. #9
    OliversMom
    Guest
    My son Oliver is 10 weeks today. He has two deltaf508 mutations. We found out at 11 days old. He started enzymes right away and seem to be doing their job! Nice to know there are others out there in a very similar situation!

  10. #10
    Super Moderator
    Join Date
    Mar 2012
    Posts
    2,035
    Welcome mom and congrats on Oliver! Our son is 5.5 years old we too went through the newborn diagnosis. I'm actually working now on a summary to help others during that hard time and the first year. I'd love you to share what you wish you knew and what you'd like to know re the first year...things that you struggle with, tricks that work etc. welcome!

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