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.
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
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.
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.
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.
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?
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!
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 ..
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!
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!
Oh my!... Our son Oliver is now 14 weeks old. He was diagnosed with double deltaf508 at 8 days old...
And I'm still overwhelmed with the whole cf thing.
I can handle all the medicaments (extra vitamins ABCDK plus iron and the enzymes in Apple juice before and during milk drinking) air treatment (cpt, 3times a day) and kinesist (minimum 3 times a week, every day when having a cold). But it's a lot to think about.
For the moment he recoverd well from his bowel surgerys (he had meconium ileum, or sticky slymy bowels). Reason they found out only 36h after birth because he didn't poo. So he was in surgery at 40h old and again after 6 weeks to close up the external stoma. As we speak he's in his 3rd week of a first 4 weeks antibiotics treatment as the first bacteria staphylococcus aureus had/has entered his lungs. Today we see him cough more, painful and difficult again as developing a new cold.
Only in gaining weight he seems to do fine.
And to be honest, CF diagnosis it's hard to handle the emotional and financial consequences. Also I have no clue how to fit him with this extra in our life, how to organise the daily practical way.
Untill the end of the month I'm in maternity leave, but I'm afraid to start thinking 'what after?'. Can I work full time again, what with our loan and bills payments if I work less? How to manage with his sis in kindergarten school? And so on and on...
My daughter turned 18 just after Christmas. We found out she had CF when she was 4 weeks old. Her first hospital admit was when she turned 6...she had Christmas and her birthday in hospital. At first it's a bit overwhelming, but it gets "easier". Routines will fall into place quickly. Always remember to enjoy your son. Don't treat him as "the sick child". No one wants to grow up like that, with that label over their head. He will achieve great things if you let him be a normal child. We've travelled with our daughter (we're in Australia) and she's been to New Zealand, on cruises, to America and to Nepal - where she was the only person on the school trip who didn't get sick! There will be tears, trials and tribulations, but over the years I've learnt that while we're dealing with CF other friends have had other stuff to deal with with their young babies. Sure, their stuff mostly goes away after a while, unlike CF, but as I often say....it's all relevant! Embrace your baby boy, teach him how to follow routines, show him the world that is waiting for him, and who knows where it might lead him. Wishing you all the best.....and trust me, it does get easier
My daughter is 1 month old and she went through the newborn diagnosis. She has two mutations there we have started enzymes right away and they are doing their job perfectly! I am happy to see my little angel recovering very fast.