new diagnosis... unrealistic clinging to hope?

[Murphysmama]

The best advice my ds pulmo gave me initially was to only read cff.org and ask him questions. I followed that advice for a few months and it really helped me. I was too overwhelmed and anxious to be able to process CF for my family let alone all of the heartbreaking struggles of other families.

 

[Kaethe108]

Dear Mom,

I was in your shoes 1 1/2 years ago. My daughter was diagnosed 6 weeks old because she did not gain weight properly. She was born with 3800 grams, lost 600 grams (LOADS of meconium for almost three days). After six weeks on formula she had only reached her birth weight again. So the pancreas might still work a little in the beginning.
BUT (!!) this is really not important. Our professor explained that the function of the pancreas can be completly substituted by meds.

Still all of this is very scaring... You gave life to this beautiful little wonder and suddenly the diagnosis forces you to be confronted with a possible early death... This is a shock! I still know exactly how it felt!

so now I want to tell you about my daughter now: She is 19 months old and the cutest little sunshine you can think of! She is so active, running through the house, babbling in two languages, making everybody smile and laugh who meets her! Taking her meds is absolutly no problem. She even reminds me of it, even before I start giving it to her. And also she LOVES our nebulizing sessions! She calls it "hoppa hoppa", because we do it hopping on a gymnastic ball in front of a big mirror, singing, laughing, making fun together.

Of course there are also difficult times. She goes to daycare now and brings home every virus you can think of. Like any other kid. But for us this is sometimes very hard and scary.
but I promise you: you will become so strong like you now wish you already would be! You will grow into it! Just take your time! Be good to yourself and your little one. One doctor told me: Never forget! You gave birth to a beautiful baby, NOT to a disease!

and please: have trust into the progress in research and medicine! I am absolutely SURE that our babys are born into a time where they will be able to live a normal, long and wonderful life. In 10 or 15 years CF will loose its horrible face!
The people benefiting from this new Generation of drugs tell amazing exeperiences...
and with the therapies that are used right now we will be able to keep the lungs of our children happy and healthy until the new drugs are available.

Sorry for writing so much..

 

[ForeverDance]

I too was there a little over a year ago. My beautiful dd was dx at 11 days and it felt like my whole world came crashing down. I remember the denial I went through at the beginning. I was so sure they were wrong, she was beautiful and strong and there was no way she could be "sick". In the beginning I wanted so badly for it not to be true and each time I had to come face to face with a CF reality, like learning she was pancreatic insufficient, it was like someone smashed me in the stomach. My DH and I both went through quite a few months of sorrow and depression. But we came out the other side stronger. We learned to take each day and each "struggle" as it comes. If you can do this, then it doesn't seem quite so overwhelming.

Our DD is now a beautiful and strong 15 month old. She is doing very well with her weight (75% for weight and 50% for weight-to-height). Her treatments are just part of our daily routine. She knows she get "pats" twice a day and will happily (most of the time) watch TV while we do them. It is even to the point where I can ask her what she needs before she eats and she will say "I-mms" (for enzymes).

The point here is that we have been there and we made it through. And even though I know firsthand that it doesn't feel that way, you will make it through too.