It has been almost two years since our son Luke's diagnosis and I just wanted to encourage you that it does get easier. I was so overwhelmed at first and I felt like there would never be any type of "normal" life for us. But Luke's treatments are just our new normal. I was with friends of ours the other day who have a baby and I actually asked her mom if the baby needed enzymes before her bottle. We had a good laugh over it--it is just that much a part of what we do, we forget that other people's babies don't take medicine before they eat! I agree with the other posts--the first few months are rough and don't try to read everything or you get too overwhelmed. You will read about different medicines and treatments and problems, but that does not mean that you will have those same experiences with your daughter.
Our son just turned two (he was diagnosed at 3 months of age) and he is the happiest, most energetic, fun loving kid you will ever meet. And about the darn cutest thing I have ever seen. He brings us so much joy. And when I think back to when he was so little and first diagnosed, I remember all of those feelings you were talking about. And I just wanted you to know that she will still have a fabulous life. I know Luke does--and what is so strange is that he seems to find more joy in life than any of us--it is like he takes nothing for granted. Just keep living and make the treatments a part of your routine and you will soon find that it is not that difficult. We have been on vacation--to the beach, to Disney World--we have kept up all of our normal traditions. It can be done, it just sometimes takes more planning. And we also have older children and we have involved them in Luke's care whenever appropriat. Out ten year old knows all about Luke's medicines--he could tell anyone that is caring for Luke exactly what Luke needs and when. It makes him feel very important. One of our other little ones calls Luke's enzymes his crayons (he has heard us say creon so often!) So my advice on your son is to let him help you--my kids will often sing or read to Luke as he gets his breathing treatments. That way we are still spending time together. I am sorry this is so long. God bless you and your family.
Angela, Mom to 7 terrific kids, including Luke, 2 years old, with CF
Our son just turned two (he was diagnosed at 3 months of age) and he is the happiest, most energetic, fun loving kid you will ever meet. And about the darn cutest thing I have ever seen. He brings us so much joy. And when I think back to when he was so little and first diagnosed, I remember all of those feelings you were talking about. And I just wanted you to know that she will still have a fabulous life. I know Luke does--and what is so strange is that he seems to find more joy in life than any of us--it is like he takes nothing for granted. Just keep living and make the treatments a part of your routine and you will soon find that it is not that difficult. We have been on vacation--to the beach, to Disney World--we have kept up all of our normal traditions. It can be done, it just sometimes takes more planning. And we also have older children and we have involved them in Luke's care whenever appropriat. Out ten year old knows all about Luke's medicines--he could tell anyone that is caring for Luke exactly what Luke needs and when. It makes him feel very important. One of our other little ones calls Luke's enzymes his crayons (he has heard us say creon so often!) So my advice on your son is to let him help you--my kids will often sing or read to Luke as he gets his breathing treatments. That way we are still spending time together. I am sorry this is so long. God bless you and your family.
Angela, Mom to 7 terrific kids, including Luke, 2 years old, with CF