Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 This board is such a great place. I really needed to hear all those who wrote in to " frustration/need help " say that it gets easier. My little Leila turned 6 months today. I can't believe she's already 6 months and has endured so much, and probably has so much more to go. She is such a good, easy going baby. I feel horrible for making her cry all the time. She cries when she takes her meds and trys to spit them out, she squeezes her little mouth shut when she sees the spoon coming with enzymes (then crys when forced to take them), and bawls/struggles when put in a head down position for cpt. I know she's small yet, and I haven't even seen real trouble with cpt! I just hate this and sometimes cry along with her too. But I'm with the rest of you, and will do everything I can to not let CF beat us. Just needed to vent this too, because none of my other friends seem to understand. Keeley mom to Leila, 6m. wcf, and Hadley, 2.5yrs. nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Keely, When JC was 6 months we did his cpt while he was sleeping. The morning one during his nap and the evening at bedtime. You might try that for a while and then when she gets a little older start doing it when she is awake. JC doesn't like cpt but he doesn't really fight and sometimes he still falls asleep during it. He sometimes refuses to come to me when its time but once we get started he's usually good. He mostly asks " why do I have to hang down? " Angie Frustration & tears > This board is such a great place. I really needed to hear all those who wrote in to " frustration/need help " say that it gets easier. My little Leila turned 6 months today. I can't believe she's already 6 months and has endured so much, and probably has so much more to go. She is such a good, easy going baby. I feel horrible for making her cry all the time. She cries when she takes her meds and trys to spit them out, she squeezes her little mouth shut when she sees the spoon coming with enzymes (then crys when forced to take them), and bawls/struggles when put in a head down position for cpt. I know she's small yet, and I haven't even seen real trouble with cpt! I just hate this and sometimes cry along with her too. But I'm with the rest of you, and will do everything I can to not let CF beat us. Just needed to vent this too, because none of my other friends seem to understand. > > Keeley > mom to Leila, 6m. wcf, and Hadley, 2.5yrs. nocf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2003 Report Share Posted January 24, 2003 Hello Keeley, I have a 2 years old girl who was diagnost at 8 months and at that time, it was very difficult to give her her enzymes and oral med (she just started with inhaled med) but if it can encourage you, Now she takes her enzymes alone (5 pills before each meal) and she even ask for them when there is food she wants and she holds her mask herself for her tobramycin treament. I never let her cries win on me even if it brokes my heart but that's probably why she's so cooperative now... I used to cry with her too no so long ago... Keep doing your good work and those cries will be worth it later. Caroline mom of Raphaëlle 28 months wcf and le 5.5 years old wocf and a Dad diagnost with cf at the same time as her little girl! > This board is such a great place. I really needed to hear all those who wrote in to " frustration/need help " say that it gets easier. My little Leila turned 6 months today. I can't believe she's already 6 months and has endured so much, and probably has so much more to go. She is such a good, easy going baby. I feel horrible for making her cry all the time. She cries when she takes her meds and trys to spit them out, she squeezes her little mouth shut when she sees the spoon coming with enzymes (then crys when forced to take them), and bawls/struggles when put in a head down position for cpt. I know she's small yet, and I haven't even seen real trouble with cpt! I just hate this and sometimes cry along with her too. But I'm with the rest of you, and will do everything I can to not let CF beat us. Just needed to vent this too, because none of my other friends seem to understand. > > Keeley > mom to Leila, 6m. wcf, and Hadley, 2.5yrs. nocf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2003 Report Share Posted January 25, 2003 Angie, Did you pick him up after he fell asleep? The problem I run into is that she nurses to sleep at nap & bed, then is full. If I turn her head down after eating won't she vomit? She eats every 3 hours during that day, so it seems like awake is our only option. She sometimes falls asleep, though, after crying hard and getting exhausted. At least she's using those lungs, huh? Keeley Frustration & tears > This board is such a great place. I really needed to hear all those who wrote in to " frustration/need help " say that it gets easier. My little Leila turned 6 months today. I can't believe she's already 6 months and has endured so much, and probably has so much more to go. She is such a good, easy going baby. I feel horrible for making her cry all the time. She cries when she takes her meds and trys to spit them out, she squeezes her little mouth shut when she sees the spoon coming with enzymes (then crys when forced to take them), and bawls/struggles when put in a head down position for cpt. I know she's small yet, and I haven't even seen real trouble with cpt! I just hate this and sometimes cry along with her too. But I'm with the rest of you, and will do everything I can to not let CF beat us. Just needed to vent this too, because none of my other friends seem to understand. > > Keeley > mom to Leila, 6m. wcf, and Hadley, 2.5yrs. nocf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2003 Report Share Posted January 25, 2003 Caroline, Wow, what a grown up little girl your Raphaëlle is! It sounds like you've done a great job making her responsible for parts of her care and she must feel so empowered. Good for you! I hope to do as well. Her daddy was diagnosed at the same time? The docs (as well as the rest of you) must have been very surprised. I guess Raphaëlle will have a good role model in her dad! Keeley Re: Frustration & tears Hello Keeley, I have a 2 years old girl who was diagnost at 8 months and at that time, it was very difficult to give her her enzymes and oral med (she just started with inhaled med) but if it can encourage you, Now she takes her enzymes alone (5 pills before each meal) and she even ask for them when there is food she wants and she holds her mask herself for her tobramycin treament. I never let her cries win on me even if it brokes my heart but that's probably why she's so cooperative now... I used to cry with her too no so long ago... Keep doing your good work and those cries will be worth it later. Caroline mom of Raphaëlle 28 months wcf and le 5.5 years old wocf and a Dad diagnost with cf at the same time as her little girl! > This board is such a great place. I really needed to hear all those who wrote in to " frustration/need help " say that it gets easier. My little Leila turned 6 months today. I can't believe she's already 6 months and has endured so much, and probably has so much more to go. She is such a good, easy going baby. I feel horrible for making her cry all the time. She cries when she takes her meds and trys to spit them out, she squeezes her little mouth shut when she sees the spoon coming with enzymes (then crys when forced to take them), and bawls/struggles when put in a head down position for cpt. I know she's small yet, and I haven't even seen real trouble with cpt! I just hate this and sometimes cry along with her too. But I'm with the rest of you, and will do everything I can to not let CF beat us. Just needed to vent this too, because none of my other friends seem to understand. > > Keeley > mom to Leila, 6m. wcf, and Hadley, 2.5yrs. nocf > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2003 Report Share Posted January 25, 2003 Keeley, JC has never had a problem with doing to cpt after a meal. It doesn't seem to bother him. But then he appears to have a cast iron stomach. Nothing much bothers him. I know some children have a problem with this though. You really don't have to have their head but a little bit lower than their hips. It doesn't have to be a real dramatic angle. I nursed JC to sleep also and never had a problem doing cpt shortly after. Angie Re: Frustration & tears > Angie, > > Did you pick him up after he fell asleep? The problem I run into is that she nurses to sleep at nap & bed, then is full. If I turn her head down after eating won't she vomit? She eats every 3 hours during that day, so it seems like awake is our only option. She sometimes falls asleep, though, after crying hard and getting exhausted. At least she's using those lungs, huh? > > Keeley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 Keeley, and everyone else fighting with medications and physio, I feel your pain! It does get better/easier/less tearful..... the children really do start taking their own medication and all that other stuff.... this too shall pass.... Much love - Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD? Canberra Australia- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 Hello again Keeley, Raphaëlle's Dad can't be a very good model cause he does'nt have much symptoms, only digestives (different mutation than Raphaëlle) and he always forgets to take his enzymes... easier for kids to get good habits I guess! doesn't see him as sick, he always had digestive symptomes since he's a baby so for him its normal. We all where very suprised! And the docs too cause mens with his mutation (deltaF508 and Polymorphism 5T of intro 8) are most often steril and has 3 childrens!! I'm sure your little one will be as good (if not better) as Raphy. We have to enjoy every moments cause time goes fast... Caroline > > This board is such a great place. I really needed to hear all > those who wrote in to " frustration/need help " say that it gets > easier. My little Leila turned 6 months today. I can't believe > she's already 6 months and has endured so much, and probably has so > much more to go. She is such a good, easy going baby. I feel > horrible for making her cry all the time. She cries when she takes > her meds and trys to spit them out, she squeezes her little mouth > shut when she sees the spoon coming with enzymes (then crys when > forced to take them), and bawls/struggles when put in a head down > position for cpt. I know she's small yet, and I haven't even seen > real trouble with cpt! I just hate this and sometimes cry along with > her too. But I'm with the rest of you, and will do everything I can > to not let CF beat us. Just needed to vent this too, because none of > my other friends seem to understand. > > > > Keeley > > mom to Leila, 6m. wcf, and Hadley, 2.5yrs. nocf > > > > > > Quote Link to comment Share on other sites More sharing options...
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