Guest guest Posted July 18, 2001 Report Share Posted July 18, 2001 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 January 4, 2004 Report Share Posted January 4, 2004 Hi I am Gia, mommy to Ciara with bilateral clubfoot born 8-1-03. If you read my post from a few min ago you will see that we have had some issues to deal with but I think Dr. Dobbs is so AWESOME. I was seeing a non Ponseti method doctor until Ciara was in her 6th week of casting and found out about this website. I left my first ortho doctor as fast as lightening and went to Children's Hospital in STL until I got in to the Shriners in STL. I wouldn't go to anyone else now that I have met Dr. Dobbs and see him. Email me anytime. A really good friend of mine lives in Belleville, IL so next time I am in the area, maybe we can get together. Let me know. I met H. and Isabella and their family when I went to Shriners in late October I think it was. It is really great to meet someone else that has gone through this and can relate to everything that you are going through too. I also ran into Kathy G. from Texas last time we were in for a cast change. Hi girls! How is Lyssa? When are you coming back to STL? Gia Shelby Ciara 8-1-03 DBB 23/7 Hi my name is Kramer I am from Belleville, IL. My son has congenital bilateral Clubfoot. He was born 7 weeks prematue. He sees Dr. Dobbs at Shriner's in St. Louis, MO. I think that he is a wonderful DR. He has put my son first. He won't cast him until his feet are big enough. What I mean by that is that only weigh 3lbs. 8oz. at birth. He was casted three times while he was in the NICU. When he went to see DR.DOBBS he wouldn't recast him until he thinks that his feet is big enough for the shoes. So please anyone who's child has seen Dr. Dobbs I would like some info. Who's child has had a positional head deformity. My son really favors his R side. He is 3 months old now and is hopefully getting casted Jan.15, 2004. Kramer Quote Link to comment Share on other sites More sharing options...
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