texascfdad
New member
hey everyone.
im a 23 yr old male from texas whos son was born with cf. he is 6 weeks old now and we are already seing a cf clinic in san antonio. the first two weeks of life he was at santa rosa inthe NICU for a meconeum ileus. he is on creon 5 enzymes and we are doing cpt twice a day although thankfully he has not shown any respritory symptoms yet. BTY, he has the homozygous Delta F508. i guess we are blessed though that he is such a good baby. hes not colicky, and he only fusses when hes hungry, and he sleeps most of the night. so at least thats one thing we dont have to worry about on top of everything else we will have to go thru with him.
its such a big change and very stressfull dealing with all of this. me, my wife, and both of our families are smokers, so we have to quit, at least me and the wife. its hard to quit, but we have cut back and in the mean time everyone knows that all smoking is done outside the house, and if hes outside, not to smoke around him.
its hard thinking into the future all the things i thought we would do. and now i dotn know what he will be able to do when hes older. i wanted him to be in the boy scouts, but now im worried about him being around the campfire smoke, and im a volunteer firefighter here, and just figured he would grow up at the station too and be a volunteer also, but now i dont think he can, unless he wears a cartridge respirator or something. the doctors said his enzme tests for his liver came back high, so when we go back the 14th, we have to take a liver sonogram and another test. but i cant find much information on liver problems with cf. sometimes i worry about what is gonna happen to him and it just makes me sick. i think sometimes the only thing keeping me and my wife strong is our faith. how do you look at your precious son, the most adorable thing youve ever seen and teel someone or yourself that hes just perfect, when you know hes got cf. I know he can grow up and live a semi normal life, and that there is new research and medicines coming out, but how does it affect you CFers lives knowing that you only have less than half the life time of an average human.
I used to think i had some control over things until my son was born with CF. Its difficult going from in control to not having control of anything beyond your own decisions.
any comments or suggestions would be appreciated. I love my son so much and want to rasie him the best i can
im a 23 yr old male from texas whos son was born with cf. he is 6 weeks old now and we are already seing a cf clinic in san antonio. the first two weeks of life he was at santa rosa inthe NICU for a meconeum ileus. he is on creon 5 enzymes and we are doing cpt twice a day although thankfully he has not shown any respritory symptoms yet. BTY, he has the homozygous Delta F508. i guess we are blessed though that he is such a good baby. hes not colicky, and he only fusses when hes hungry, and he sleeps most of the night. so at least thats one thing we dont have to worry about on top of everything else we will have to go thru with him.
its such a big change and very stressfull dealing with all of this. me, my wife, and both of our families are smokers, so we have to quit, at least me and the wife. its hard to quit, but we have cut back and in the mean time everyone knows that all smoking is done outside the house, and if hes outside, not to smoke around him.
its hard thinking into the future all the things i thought we would do. and now i dotn know what he will be able to do when hes older. i wanted him to be in the boy scouts, but now im worried about him being around the campfire smoke, and im a volunteer firefighter here, and just figured he would grow up at the station too and be a volunteer also, but now i dont think he can, unless he wears a cartridge respirator or something. the doctors said his enzme tests for his liver came back high, so when we go back the 14th, we have to take a liver sonogram and another test. but i cant find much information on liver problems with cf. sometimes i worry about what is gonna happen to him and it just makes me sick. i think sometimes the only thing keeping me and my wife strong is our faith. how do you look at your precious son, the most adorable thing youve ever seen and teel someone or yourself that hes just perfect, when you know hes got cf. I know he can grow up and live a semi normal life, and that there is new research and medicines coming out, but how does it affect you CFers lives knowing that you only have less than half the life time of an average human.
I used to think i had some control over things until my son was born with CF. Its difficult going from in control to not having control of anything beyond your own decisions.
any comments or suggestions would be appreciated. I love my son so much and want to rasie him the best i can