Guest guest Posted March 13, 2001 Report Share Posted March 13, 2001 Good to see you here, Ruthie Jan Ralston, in Wantage Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2001 Report Share Posted July 18, 2001 , Yes, it is! There are good days and there are bad days and it helps having people here to talk about it. Deb mom of w/CF, Lynzie wo/CF, Natalynn w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2001 Report Share Posted July 18, 2001 Hi , welcome to the list, although you have a sad reason to join. I hope your son will do better soon, as normally children born with meconium ileus do after a while. Many of us have found that the first year is the most difficult one and one finds it impossible to handle everything. It usually gets better afterwards. Bye Torsten > Jane, > > my son is 7 weeks old. He was born with macomium illus (so new to it > I can't evan spell it yet. He had his operation to remove it when he > was 48 hours old and he remains in hospital as his tummy will not > shrink. We are getting there slowly (one step forward two back). I > find it impossible thinking that my wife (viki) and I will have to > cope with 1 CF child and 2 unafected children. How do you cope with > 4 CF 1 possible and another on the way? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2001 Report Share Posted July 18, 2001 Torsten, I agree with you. One of the reasons I love the lists so much is that they gave me hope when was diagnosed. , we do have 3 with CF and one with Juvenile Diabetes. I guess you jut do what you have to do. Older two kids (8 and 9) will also help out when they are in the mood. Our 8 you with diabetes is really pretty self sufficient, the only thing she cannot do at this point is draw up her insulin and inject herself in the arms or legs (she can inject herself in the belly though...go figure!) Also as the kids get bigger, they become more self sufficient. Mallory has been holding her own nebs for about two years now, and has since he was diagnosed. They have swallowed their enzymes since about 2 and 16 months respectively, too, so that helps also. Our only high maintanance one is JoJo...he has decided he has no intention of being our easy child, lol and when he is not in the mood, he will dump his neb or if we hold him he will kick and scream, have fits, you name it, and he does not swallow enzymes consistently (therefore we waste alot..) Anyway, it also becomes a part of life..and you learn tricks that work for you to fit into your families lifestyle. (not everything will work for everyone, but it sure helps me to hear all of the members suggestions) Examples include, springing for a duraneb 3000 and doing nebs in the van on the way to school, etc that makes life easier. Actually, having other kids actually helps sometimes (re: boost supplements, the other kids will say " how come he gets a shake and we don't " which causes compliance, lol..by the way, ironically, the other kids hate boost, they just say it cause they know it will help get them to drink them) Also, the other kids will help alot as far as snuggling with them while they get their nebs (hey, all the kids want to use the vest, lol) and also they will say stuff to them like " hey cool,you look like an astronaut " Anyway, I guess that I just wanted to say that it may all seem so very overwhelming now, but it is all doable (not that you will get alot of sleep, lol) and your family will find your own way. take care Jen, mommy of 7, 3 with CF and one with juvenile diabetes > Hi , > > welcome to the list, although you have a sad reason to join. I hope > your son will do better soon, as normally children born with meconium > ileus do after a while. > > Many of us have found that the first year is the most difficult one > and one finds it impossible to handle everything. It usually gets > better afterwards. > > Bye > Torsten > > > Jane, > > > > my son is 7 weeks old. He was born with macomium illus (so new to > it > > I can't evan spell it yet. He had his operation to remove it when > he > > was 48 hours old and he remains in hospital as his tummy will not > > shrink. We are getting there slowly (one step forward two back). > I > > find it impossible thinking that my wife (viki) and I will have to > > cope with 1 CF child and 2 unafected children. How do you cope > with > > 4 CF 1 possible and another on the way? > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2001 Report Share Posted July 18, 2001 Welcome, , to this great list with fine folks like you and your family, love to all of you, n Rojas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2001 Report Share Posted July 18, 2001 YES!!!!! --- " Bentley, P SITI-ISEC-34 " wrote: > Thanks, > > it's great not having to explain what CF is to > someone. Everybody is realy > nice, they're " very sorry to hear he's not well " > which is nice but, I don't > want sympathy, I want someone to talk to who > understands. GOD! is'nt it > frustrating! > > . > > > > > > Re: Welcome > > > Torsten, I agree with you. One of the reasons I > love the lists so > much is that they gave me hope when was > diagnosed. > , we do have 3 with CF and one with Juvenile > Diabetes. I guess > you jut do what you have to do. Older two kids (8 > and 9) will also > help out when they are in the mood. Our 8 you with > diabetes is > really pretty self sufficient, the only thing she > cannot do at this > point is draw up her insulin and inject herself in > the arms or legs > (she can inject herself in the belly though...go > figure!) Also as > the kids get bigger, they become more self > sufficient. Mallory has > been holding her own nebs for about two years now, > and has > since he was diagnosed. They have swallowed their > enzymes since > about 2 and 16 months respectively, too, so that > helps also. Our > only high maintanance one is JoJo...he has decided > he has no > intention of being our easy child, lol and when he > is not in the > mood, he will dump his neb or if we hold him he will > kick and scream, > have fits, you name it, and he does not swallow > enzymes consistently > (therefore we waste alot..) Anyway, it also becomes > a part of > life..and you learn tricks that work for you to fit > into your > families lifestyle. (not everything will work for > everyone, but it > sure helps me to hear all of the members > suggestions) Examples > include, springing for a duraneb 3000 and doing nebs > in the van on > the way to school, etc that makes life easier. > Actually, having > other kids actually helps sometimes (re: boost > supplements, the other > kids will say " how come he gets a shake and we > don't " which causes > compliance, lol..by the way, ironically, the other > kids hate boost, > they just say it cause they know it will help get > them to drink > them) Also, the other kids will help alot as far as > snuggling with > them while they get their nebs (hey, all the kids > want to use the > vest, lol) and also they will say stuff to them like > " hey cool,you > look like an astronaut " > Anyway, I guess that I just wanted to say that it > may all seem so > very overwhelming now, but it is all doable (not > that you will get > alot of sleep, lol) and your family will find your > own way. > take care > Jen, mommy of 7, 3 with CF and one with juvenile > diabetes > > > > > Hi , > > > > welcome to the list, although you have a sad > reason to join. I hope > > your son will do better soon, as normally children > born with > meconium > > ileus do after a while. > > > > Many of us have found that the first year is the > most difficult one > > and one finds it impossible to handle everything. > It usually gets > > better afterwards. > > > > Bye > > Torsten > > > > > Jane, > > > > > > my son is 7 weeks old. He was born with > macomium illus (so new > to > > it > > > I can't evan spell it yet. He had his operation > to remove it > when > > he > > > was 48 hours old and he remains in hospital as > his tummy will not > > > shrink. We are getting there slowly (one step > forward two > back). > > I > > > find it impossible thinking that my wife (viki) > and I will have > to > > > cope with 1 CF child and 2 unafected children. > How do you cope > > with > > > 4 CF 1 possible and another on the way? > > > > > > > > > > PLEASE do not post religious emails to the list. > > > ------------------------------------------- > > > The opinions and information exchanged on this list > should > IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY > MEDICATIONS OR TREATMENTS. > > -------------------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2001 Report Share Posted July 19, 2001 Hi all, Update news........!!!!!!! His tummy is down to 39CM!!!! It's still big, bit not as big as a football any more. Have to be careful not to get too excited though, he's still only having 5 mills of milk every 3 hours. We're not quite there yet but one step closer. Thanks for all the encouraging reply guys. . Re: Welcome Torsten, I agree with you. One of the reasons I love the lists so much is that they gave me hope when was diagnosed. , we do have 3 with CF and one with Juvenile Diabetes. I guess you jut do what you have to do. Older two kids (8 and 9) will also help out when they are in the mood. Our 8 you with diabetes is really pretty self sufficient, the only thing she cannot do at this point is draw up her insulin and inject herself in the arms or legs (she can inject herself in the belly though...go figure!) Also as the kids get bigger, they become more self sufficient. Mallory has been holding her own nebs for about two years now, and has since he was diagnosed. They have swallowed their enzymes since about 2 and 16 months respectively, too, so that helps also. Our only high maintanance one is JoJo...he has decided he has no intention of being our easy child, lol and when he is not in the mood, he will dump his neb or if we hold him he will kick and scream, have fits, you name it, and he does not swallow enzymes consistently (therefore we waste alot..) Anyway, it also becomes a part of life..and you learn tricks that work for you to fit into your families lifestyle. (not everything will work for everyone, but it sure helps me to hear all of the members suggestions) Examples include, springing for a duraneb 3000 and doing nebs in the van on the way to school, etc that makes life easier. Actually, having other kids actually helps sometimes (re: boost supplements, the other kids will say " how come he gets a shake and we don't " which causes compliance, lol..by the way, ironically, the other kids hate boost, they just say it cause they know it will help get them to drink them) Also, the other kids will help alot as far as snuggling with them while they get their nebs (hey, all the kids want to use the vest, lol) and also they will say stuff to them like " hey cool,you look like an astronaut " Anyway, I guess that I just wanted to say that it may all seem so very overwhelming now, but it is all doable (not that you will get alot of sleep, lol) and your family will find your own way. take care Jen, mommy of 7, 3 with CF and one with juvenile diabetes > Hi , > > welcome to the list, although you have a sad reason to join. I hope > your son will do better soon, as normally children born with meconium > ileus do after a while. > > Many of us have found that the first year is the most difficult one > and one finds it impossible to handle everything. It usually gets > better afterwards. > > Bye > Torsten > > > Jane, > > > > my son is 7 weeks old. He was born with macomium illus (so new to > it > > I can't evan spell it yet. He had his operation to remove it when > he > > was 48 hours old and he remains in hospital as his tummy will not > > shrink. We are getting there slowly (one step forward two back). > I > > find it impossible thinking that my wife (viki) and I will have to > > cope with 1 CF child and 2 unafected children. How do you cope > with > > 4 CF 1 possible and another on the way? > > > > PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2001 Report Share Posted July 20, 2001 It sounds like it is quickly on his way to " feeling better land " Very good news to all I hold you all in my thoughts as he climbs the ladder back to wellness..It is exciting to be looking forward to getting along with life and knowing your loved one is feeling better. LOVE & HUGS, GrandmomBEV Re: Welcome Torsten, I agree with you. One of the reasons I love the lists so much is that they gave me hope when was diagnosed. , we do have 3 with CF and one with Juvenile Diabetes. I guess you jut do what you have to do. Older two kids (8 and 9) will also help out when they are in the mood. Our 8 you with diabetes is really pretty self sufficient, the only thing she cannot do at this point is draw up her insulin and inject herself in the arms or legs (she can inject herself in the belly though...go figure!) Also as the kids get bigger, they become more self sufficient. Mallory has been holding her own nebs for about two years now, and has since he was diagnosed. They have swallowed their enzymes since about 2 and 16 months respectively, too, so that helps also. Our only high maintanance one is JoJo...he has decided he has no intention of being our easy child, lol and when he is not in the mood, he will dump his neb or if we hold him he will kick and scream, have fits, you name it, and he does not swallow enzymes consistently (therefore we waste alot..) Anyway, it also becomes a part of life..and you learn tricks that work for you to fit into your families lifestyle. (not everything will work for everyone, but it sure helps me to hear all of the members suggestions) Examples include, springing for a duraneb 3000 and doing nebs in the van on the way to school, etc that makes life easier. Actually, having other kids actually helps sometimes (re: boost supplements, the other kids will say " how come he gets a shake and we don't " which causes compliance, lol..by the way, ironically, the other kids hate boost, they just say it cause they know it will help get them to drink them) Also, the other kids will help alot as far as snuggling with them while they get their nebs (hey, all the kids want to use the vest, lol) and also they will say stuff to them like " hey cool,you look like an astronaut " Anyway, I guess that I just wanted to say that it may all seem so very overwhelming now, but it is all doable (not that you will get alot of sleep, lol) and your family will find your own way. take care Jen, mommy of 7, 3 with CF and one with juvenile diabetes > Hi , > > welcome to the list, although you have a sad reason to join. I hope > your son will do better soon, as normally children born with meconium > ileus do after a while. > > Many of us have found that the first year is the most difficult one > and one finds it impossible to handle everything. It usually gets > better afterwards. > > Bye > Torsten > > > Jane, > > > > my son is 7 weeks old. He was born with macomium illus (so new to > it > > I can't evan spell it yet. He had his operation to remove it when > he > > was 48 hours old and he remains in hospital as his tummy will not > > shrink. We are getting there slowly (one step forward two back). > I > > find it impossible thinking that my wife (viki) and I will have to > > cope with 1 CF child and 2 unafected children. How do you cope > with > > 4 CF 1 possible and another on the way? > > > > PLEASE do not post religious emails to the list. ------------------------------------------- The opinions and information exchanged on this list should IN NO WAY be construed as medical advice. PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. -------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
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