Hi Marina
I'm Gemma and I have a nearly 5 1/2 year old with CF. Thinking back to Sophies initial diagnosis I was heartbroken too. It's an awful lot to get your head around, the treatments, medicines, hospital appointments etc plus just looking after a baby seems way too much. For us, it has got easier. Although something new may suddenly appear you learn to adjust very quickly. It's not that you get used to CF, you learn to adapt and live alongside it.
Advances in treatments are happening all the time and things are looking good for little ones now.
You will soon get yourself into a little routine that suits your family and you'll be doing everything without even thinking about it.
Is there anything specific you want to know or need help with?
It seems like a minefield now but you will learn at your own pace and soon become an expert with your childs needs and health.
Try and allow your child to enjoy life and dont hold them back because of their CF unless you absolutely have to.
Sophies teacher has said to me today that unless she had read all the information about her she would have no idea she had CF or any other problem. She's just like all of her other classmates and possibly has even more energy than most of them.
Try and enjoy the early years as it is easy to focus on CF rather than cherishing all their milestones. Trust me they soon grow up into head strong little people!
Talking to others really helps so feel free to give me a shout anytime.
(hugs)
x
