Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Sara, Do you live in the St. Louis area? I am wondering because my husband and I are trying to possibly get orders there. That would be great I would already know someone over there. If so what do you think about clinic does it seem to be all up to date and running smoothly Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 We live 2 1/2 hours away. There is a cf clinic 30 minutes from us, but we think it is worth it to go to St Louis. We go to Cardinal Glennon Children's Hospital. So far I am happy with the care Zach is getting, but I really have nothing to compare it to. The St Louis Children's Hospital has a cf clinic and is part of the Theraputic Network. No one has ever told me that one clinic is better than another, so I think they are about the same. St Louis is a great town. I am trying to stay in close touch with our clinic and their events even though it means such a long drive. I am hoping to convince my husband to move closer to a cf clinic with high survivability results, but he is reluctant to move. Let me know if you will be moving in our direction. Sara - mommy to Zach 19 months wcf > Sara, > Do you live in the St. Louis area? I am wondering because my > husband and I are trying to possibly get orders there. That would be > great I would already know someone over there. If so what do you > think about clinic does it seem to be all up to date and running > smoothly > > Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Sara, I will do that. I am submitting the paperwork in about a month and a half and the airforce has control after that. It could be 20 years before we move no just kidding it may be around the 1st of the year or so. I am trying to get started doing all the research into what clinics have the best results as well and to see if there are air bases near. I wonder if the CFF would help me do this? I have not heard one is better than the next much either except that there are ones that have better more up to date equiptment and also others partake in clinical trials more than others. I am sure that there are a lot of differences I just have not been to any others except the one here in Pensecola florida. It is a satelite clinic from one in Gainsville Florida. Love to you all Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Ashauna, you might have to research the different bases compared to the CFF list of clinics. There are lots of bases for different branches of the armed services around here though. My dad used to work for the gov't so I'll ask him where the nearest Air Force base is-he will probably know. There are 3 different clinics near us here in Southeastern PA. -Children's Hospital of Philadelphia (voted one of the best children's hospital for several years running-top this year and last) -St. 's Hospital for Children -DuPont Hospital for Children All three are supposed to have wonderful clinics. I think St. Chris's is a bit smaller though and I have met several people who have switched to CHoP's clinic because their docs were moving to CHoP. Good luck. Re: Re: CF Experience Sara, I will do that. I am submitting the paperwork in about a month and a half and the airforce has control after that. It could be 20 years before we move no just kidding it may be around the 1st of the year or so. I am trying to get started doing all the research into what clinics have the best results as well and to see if there are air bases near. I wonder if the CFF would help me do this? I have not heard one is better than the next much either except that there are ones that have better more up to date equiptment and also others partake in clinical trials more than others. I am sure that there are a lot of differences I just have not been to any others except the one here in Pensecola florida. It is a satelite clinic from one in Gainsville Florida. Love to you all Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 , We must live in opposite directions from St Louis. Will you be going to the CF experience event at the zoo? My husband and I hope to make a weekend out of it, if we can make sitter arrangements. How are you feeling? Any morning sickness? When is Madeline's birthday? Zach was born 2/8/02. Sara > I live only two hours from St. Louis and have several friends that live in the area. We have even mentioned maybe switching our care from Columbia, MO to St. Louis, MO. If you do get orders, I would love to keep in touch and arrange meetings, I have never done that before and I would love to put faces with the names!!! Thanks for all of the comforting advice about the possible pregnancy, I'm pretty sure we'll be having a baby in May, but I would like to hear it from the doctor before I announce it to everyone. My older sister has had a lot of troubles with miscarriages and I don't want to get ahead of myself. Thanks again for cheering me up. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Thanks , I have read all the posts that you and some of the others have posted about CHoP sound like a big clinic that does really well with the kids. I am really looking forward to moving from here. I love the beach but ever since we moved here Colgan has had the congestion problem. Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 , I understand not wanting to tell the world until you get a good positive answer. I had a lot of trouble with miscarriages before I had my second son. Colgan. My first son was easy to get pregnant with so I never imagined that I would have so much trouble. I had two before my second was born. 12 weeks and 16 weeks. Both times I had already told everyone and it was really hard to have to tell them what had happened because of course they did not know any better. I am so happy that you are though. I really hope that you guys have a healthy baby. Are you going to get prenatal testing done or just wait and see? If to personal I am sorry I was just curious. I almost think that I would wait so that I would not have to worry about things the entire time. I know you would anyways so I guess that there really is no right answer to that problem. I would really like to keep in contact if we do move to that area. I have not met any other parents of CF kids and developed a relationship friendship with them in person. Although I feel like all of you are my friends. I talk to you all more than I do my best friends LOL. I have talked on the phone with another CF mom in this area though and that is nice. Talk with you soon Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2003 Report Share Posted September 9, 2003 Ashauna, my sister (14.5 years older than I) had an oldest son who died of cf many, many years ago when there wasn't much that could be done compared to today. She had five other children, and five miscarriages inbetween. The geneticist at her hospital told her that in all lilihood the lost ones were children with cystic fibrosis--this often happens with very serious illness and both parents carriers--It is very sad, but I admired my sister for not blaming herself! Love to you, Ashauna, n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 In a message dated 9/10/2003 9:06:19 AM Central Daylight Time, Ashauna_and_@... writes: > Subj:Re: CF Experience > Date:9/10/2003 9:06:19 AM Central Daylight Time > From:<A HREF= " mailto:Ashauna_and_@... " >Ashauna_and_@...</A> > Reply-to:<A HREF= " mailto:cfparents " >cfparents </A> > To:<A HREF= " mailto:cfparents " >cfparents </A> > Sent from the Internet > > > > n, > This is what they thought probably happened to them as well. I > guess that perhaps they just would have been to sick to carry to full > term. I know that that must have been painful for your sister. At > first I did blame myself because I was always working so hard, but now I > understand that it could have very well been CF that caused it to > happen. > Love to you > Ashauna My first child that has CF was only two days early and my third child that has CF was 9 days late. Go figure!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 n, This is what they thought probably happened to them as well. I guess that perhaps they just would have been to sick to carry to full term. I know that that must have been painful for your sister. At first I did blame myself because I was always working so hard, but now I understand that it could have very well been CF that caused it to happen. Love to you Ashauna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Two weeks before I got pregnant with Ricky I miscarried (very early, only a few weeks pregnant). Since Ricky's diagnosis, I've wondered if that child had CF, but no use worrying about it now, right? Interesting to think about though. Becky Re: CF Experience Ashauna, my sister (14.5 years older than I) had an oldest son who died of cf many, many years ago when there wasn't much that could be done compared to today. She had five other children, and five miscarriages inbetween. The geneticist at her hospital told her that in all lilihood the lost ones were children with cystic fibrosis--this often happens with very serious illness and both parents carriers--It is very sad, but I admired my sister for not blaming herself! Love to you, Ashauna, n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Me too! I miscarried when I was 9 weeks. less than 6 weeks later I was pregnant with . The OB/GYN told me that it was very possible that the first baby had something wrong with it, maybe CF...... Re: CF Experience Ashauna, my sister (14.5 years older than I) had an oldest son who died of cf many, many years ago when there wasn't much that could be done compared to today. She had five other children, and five miscarriages inbetween. The geneticist at her hospital told her that in all lilihood the lost ones were children with cystic fibrosis--this often happens with very serious illness and both parents carriers--It is very sad, but I admired my sister for not blaming herself! Love to you, Ashauna, n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Becki, Sorry about that I know it is hard. Love to you and yours Ashauna Quote Link to comment Share on other sites More sharing options...
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