Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 , I know how you feel it has been 3 years now since we found out about our two of our girls have CF. It is very hard and support is the best thing you can get and you will get that with this group. Where do you live? I am in Iowa are you anywhere close to that? Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 , Jen, and Emma, Welcome to the group. I am and my son Elliot is 11mths old with cf. He was diagnosed at 5 weeks of age. I am sorry that Emma was born with cf. How is she doing right now? I bet she is a little cutey. I am very new to this but have found an unspeakable amount of support. Just reading posts and learning new information makes you feel like you are part of something very positive. Please feel free to email me at sueandjacques@... Mom to Elliot 11mths wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Hello, my name is Jeffery. My wife and I just found out our daughter Emma (3 months) has CF. It has been a very difficult time for us. It has been evern hard on us due to the lack of support groups. Since CF is fairly rare we feel very aone. WE are looking for other parents who have been through this and are will to talk and share some of your experiences. We can be rached at jjeffery99@... Thank you -, Jen & Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Hello and Welcome-- You are alone no more. This groups has been so many things to me most of the time I just read the posts, learn and smile and cry. My son, was born 7months ago with cf, please feel free to email this group about anything!! they are knowledgeable, compassionate, understanding and much much more! I am a couple of months ahead of you, I will be glad to answer any questions that I can. My thoughts are with you and your family. Crystal, mother of 7 months with lots of smiles > Hello, my name is Jeffery. My wife and I just found > out our daughter Emma (3 months) has CF. It has been a very > difficult time for us. It has been evern hard on us due to the lack > of support groups. > > Since CF is fairly rare we feel very aone. WE are looking for other > parents who have been through this and are will to talk and share > some of your experiences. > > We can be rached at jjeffery99@A... > > Thank you > > -, Jen & Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Hi there, We are all here and on 3 other lists as well.YOU ARE NOT ALONE... We are always here for each other.We have newsletters and many things that can help you all understand and to deal with CF. Where do you live,? What clinic do you attend.? If you will send me here your mailing address, I will be happy to send you some booklets, tapes and info that might help you as well.There is no charge,& you can also call me toll free in the states at 1- for more info or to just talk .My granddaughter is 17+ and doing very well. Getting ready to go off to college in August. Love & Hugs, GrandmomBEV Our Baby Girl has CF Hello, my name is Jeffery. My wife and I just found out our daughter Emma (3 months) has CF. It has been a very difficult time for us. It has been evern hard on us due to the lack of support groups. Since CF is fairly rare we feel very aone. WE are looking for other parents who have been through this and are will to talk and share some of your experiences. We can be rached at jjeffery99@... Thank you -, Jen & Emma 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 8, 2002 Report Share Posted January 8, 2002 Hello, Thank you for your response. What is your Grand daughter's name? Where is she going to college? We are very anxious to get in touch with others. We live in the Philadelphia area, so we go to the Children's Hospital of Philadelphia CF clinic we have been very impressed with the doctors. We have received excellent care. Our address is: & Jeffery 268 Avon Rd. Springfield, PA 19064 Thank you, Jeffery --- bev bevd@...> wrote: > > Hi there, > We are all here and on 3 other lists as well.YOU ARE > NOT ALONE... We are > always here for each other.We have newsletters and > many things that can help > you all understand and to deal with CF. Where do you > live,? What clinic do > you attend.? If you will send me here your mailing > address, I will be happy > to send you some booklets, tapes and info that > might help you as well.There > is no charge,& you can also call me toll free in the > states at > 1- for more info or to just talk .My > granddaughter is 17+ and > doing very well. Getting ready to go off to college > in August. > Love & Hugs, > GrandmomBEV > > > Our Baby Girl has CF > > > Hello, my name is Jeffery. My wife > and I just found > out our daughter Emma (3 months) has CF. It has > been a very > difficult time for us. It has been evern hard on us > due to the lack > of support groups. > > Since CF is fairly rare we feel very aone. WE are > looking for other > parents who have been through this and are will to > talk and share > some of your experiences. > > We can be rached at jjeffery99@... > > Thank you > > -, Jen & Emma > > > > > 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 8, 2002 Report Share Posted January 8, 2002 My granddaughter is ERIN, She will be going to Appalachian University in Boone, N.C. She attends the clinic at DUKE U. Very good also. Yes, your clinic is also one of the best. !!. is very well .She had a mecioum iliues at birth. nothing since then. She is also 5'12 " tall and a star basketball player. High score too. She does the pulmozyme with the vest once a day ..and takes enzymes(pancrease ) with each feeding(:). I will send out some " stuff " tomorrow afternoon there are some great folks here and you will hear from them. LOVE & HUGS, grandmomBEV Our Baby Girl has CF > > > Hello, my name is Jeffery. My wife > and I just found > out our daughter Emma (3 months) has CF. It has > been a very > difficult time for us. It has been evern hard on us > due to the lack > of support groups. > > Since CF is fairly rare we feel very aone. WE are > looking for other > parents who have been through this and are will to > talk and share > some of your experiences. > > We can be rached at jjeffery99@... > > Thank you > > -, Jen & Emma > > > > > 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 8, 2002 Report Share Posted January 8, 2002 and Jen Welcome to the list. In time it will not feel quite so bad as it does now, and even sometimes you will (almost) forget about CF. One thing (may be hard right now to realize it is positive though) is that you will enjoy your baby, savor the moments with her unlike any of your friends. while they whine and worry about losing sleep or fight over who is gonna change the diaper, you guys relish every moment, and will even more and more all the time. Cf makes you stop a bit and take stock, realize whats important. or, at least it has certainly had that effect on us and seems to for most people who don't run from it. and obviously, on the list, where folks are reaching out, you find those folks that are made stronger by CF, and appreciate their kids like most don't. welcome and nice to meet you. let us know what we can do. I am sorry that the meeting is in sad circumstances, but of course at least we all can relate a bit, having been there. Jen, mommy of 7, 3 with CF > Hello, my name is Jeffery. My wife and I just found > out our daughter Emma (3 months) has CF. It has been a very > difficult time for us. It has been evern hard on us due to the lack > of support groups. > > Since CF is fairly rare we feel very aone. WE are looking for other > parents who have been through this and are will to talk and share > some of your experiences. > > We can be rached at jjeffery99@A... > > Thank you > > -, Jen & Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Welcome , Jen and Emma, My daughter, Mackenzie is 4 and a half with cf. She was diagnosed when she was 4 days old. I am glad you've found this wonderful group. I promise you it will get easier. Christy Mom to Mackenzie 4.5 w/cf and Peyton 1 w/o cf Our Baby Girl has CF Hello, my name is Jeffery. My wife and I just found out our daughter Emma (3 months) has CF. It has been a very difficult time for us. It has been evern hard on us due to the lack of support groups. Since CF is fairly rare we feel very aone. WE are looking for other parents who have been through this and are will to talk and share some of your experiences. We can be rached at jjeffery99@... Thank you -, Jen & Emma Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2002 Report Share Posted January 8, 2002 Hi , , and Emma~ Welcome to a great group. My baby boy has CF too...he is 16 months old and we just found out in July...it feels like yesterday and a lifetime ago at the same time. I think Jen's words have much wisdom in them...CF brings out gifts and strengths that you may not have known you have. Please do give a shout if there is anything you need. *&~*&~*&~*&~*&~*&~*&~*&~*&~*&~&*~*&~*&~&*~*&~*&~&* mama to , 16 months old w CF and 3 years wo CF " One fish said to another -- do you believe in this ocean they talk about? " --Chinese proverb Quote Link to comment Share on other sites More sharing options...
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