Guest guest Posted March 8, 2004 Report Share Posted March 8, 2004 Hi, I am off to bed very quickly, but I wanted to reply and tell you that it is very normal to feel alone at this point, but it gets much better, and alot of it is because of groups like this one. My son was also diagnosed at birth and is almost 8 years old and doing well. Sometimes it still feels like yesterday that we got the news, though. Stay here and you will feel much better and make good friends. Lenora in Colorado >I am looking for other parents who have experienced having a child >with cf. I am 23 yrs. old, no history on cf, and have a month old >baby boy diagnosed at birth. I just need to know that I am not the >only one copeing with this disease. -- http://www.lenoradegen.com award winning design at small town prices http://www.cfawareness.org ....in memory...in hope...dispelling the darkness... Learn more about Cystic Fibrosis and the special people who cope with it every day This message has been scanned for viruses by the VEI Internet Automatic Email Spam and Virus Scanner, and is believed to be free of spam or viruses. Please report spam to spamtrap@.... If you would like 98.9 % spam blocked from your E-mail then go to VEI Internet for details. Anti-spam/Anti-virus is FREE with every account. http://www.vei.net/ mailtospamtrap@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 In a message dated 3/9/2004 12:47:05 AM Central Standard Time, argelia1999@... writes: I am looking for other parents who have experienced having a child with cf. I am 23 yrs. old, no history on cf, and have a month old baby boy diagnosed at birth. I just need to know that I am not the only one copeing with this disease. Well you have found the right place!! I have three daughters and two of them have CF. This is the BEST SUPPORT GROUP THERE IS!!! Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 YES, YES, YES, What a lovely POST & SOooooo TRUE!! LOVE & HUGS, GRDMBEV Re: CFF Mother Oh my goodness, you are definitly not alone! When my daughter was diagnosed, at age 9, I felt as though nobody( family firends, workmates, teachers) could possibly understand what we were going through. I was wrong. When I had to tell the school nurse, I wasi n tears, and she said " oh, we used ot have a student here two years ago with cf " and she gave me the family's phone number. For some silly reason I never called. As for those who did not know what the disease entails, all I can say is thank heavens for the internet. Everyone close to me was online and doing research, findingg out as much as they could. Others, I took it upon myself to educated them. Granted, I do not " preach " about Cf, nor do I make it sound like " hi my name is e and my daughter has CF " .Sometimes I want to shout it from the roof tops because I was feeling so isolated. Then I found the wonderful people here and I did not have to shout so loud. I have learned that all though this disease is so devastating, I am thankful that it does not affect her motor skills,nervous system or brain function. In addition, healthy or not, everyday we spend with our kids should be celebrated ( although this may be hard when you have a teenager who likes to test you ). There is so much we do not know about this disease, and I like to look at how far medical research has come just in the past 10 years. I have hope that a cure will be found in my daughters lifetime. NEVER give up hope!!!!! We all have our " down " days, and when those happen, do not feel ashamed or embarrased. Talk to us, or to someone. It sure makes you feel better! This is a great place to cry tears of sorrow and tears of joy( Thinking of Shana), a great place to learn and a great place to chat! Hang in there!!! e, mom to , 10 wcf and Ian 13 nocf ------------------------------------------- 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 March 9, 2004 Report Share Posted March 9, 2004 Welcome. I am glad that you found this group. How is your baby boy doing? I have a grandaughter that is now 2 years old and has cf. Gale > I am looking for other parents who have experienced having a child > with cf. I am 23 yrs. old, no history on cf, and have a month old > baby boy diagnosed at birth. I just need to know that I am not the > only one copeing with this disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 You've come to the right place honey. Welcome aboard. :-) Dawn mom of 4, 8 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 e, I didn't realise that was only diagnosed one year ago. Is there a picture of on this site? I love to put a face with a name. Did getting a diagnosis improve 's health? Gale > Oh my goodness, you are definitly not alone! When my daughter was > diagnosed, at age 9, I felt as though nobody( family firends, > workmates, teachers) could possibly understand what we were going > through. I was wrong. When I had to tell the school nurse, I wasi n > tears, and she said " oh, we used ot have a student here two years > ago with cf " and she gave me the family's phone number. For some > silly reason I never called. As for those who did not know what the > disease entails, all I can say is thank heavens for the internet. > Everyone close to me was online and doing research, findingg out as > much as they could. Others, I took it upon myself to educated them. > Granted, I do not " preach " about Cf, nor do I make it sound like " hi > my name is e and my daughter has CF " .Sometimes I want to > shout it from the roof tops because I was feeling so isolated. Then > I found the wonderful people here and I did not have to shout so > loud. I have learned that all though this disease is so > devastating, I am thankful that it does not affect her motor > skills,nervous system or brain function. In addition, healthy or > not, everyday we spend with our kids should be celebrated ( although > this may be hard when you have a teenager who likes to test > you ). There is so much we do not know about this disease, and I > like to look at how far medical research has come just in the past > 10 years. I have hope that a cure will be found in my daughters > lifetime. NEVER give up hope!!!!! We all have our " down " days, and > when those happen, do not feel ashamed or embarrased. Talk to us, or > to someone. It sure makes you feel better! This is a great place to > cry tears of sorrow and tears of joy( Thinking of Shana), a great > place to learn and a great place to chat! > > Hang in there!!! > e, mom to , 10 wcf and Ian 13 nocf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 Hi - you are def. not alone and this is a great place to let you know that. My son is 6 and he was diag. at 1 1/2. We were not aware of any history in either of our families. For our family, some times are more trying then others in regards to the CF; however we really do our best to appreciate all the good things. These message boards are a great source of comfort and information. I wish you well and you are not at all alone. The love for your child will give you the strength to get through. Best Wishes. Jo Ann Mom to , 6 with cf and Tommy 8, no cf > I am looking for other parents who have experienced having a child > with cf. I am 23 yrs. old, no history on cf, and have a month old > baby boy diagnosed at birth. I just need to know that I am not the > only one copeing with this disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 You by no means are alone. There are many of us in the same situation as you. My son was also diagnosed at birth and there was no history in either of our families. My son just turned 4 years old and we just love and enjoy him like crazy. I'm sure this is all so new to you right now, besides the fact that you are also a new mom! Just remember that you will find a routine of sorts (as much as parenthood allows) and CF won't be the entire focus of your lives. Your son will grow and develop his own special personality and you will find many things to smile and laugh about. At those times when you don't feel like smiling or laughing, you will have the support of many people just like you on this board! Sincerely, R, mom to Matt, 4 yrs old CFF Mother I am looking for other parents who have experienced having a child with cf. I am 23 yrs. old, no history on cf, and have a month old baby boy diagnosed at birth. I just need to know that I am not the only one copeing with this disease. ------------------------------------------- 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 March 9, 2004 Report Share Posted March 9, 2004 Well you've found the right place. You certainly aren't the only one coping with cf. We almost all have children with cf. My daughter is 20 and usually is doing great. She is having a bit of a rough patch right now. She has been coughing more again. We have clinic again tomorrow so I'll let you all know how it goes. If ya'll have any special thoughts left over aim some this way! love, M Mom of Nick age 21 nocf and age 20 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 Good place to come, My daughter is 20 1/2 years old and doing pretty well. She was diagnosed at birth because she had a blockage and they did surgery when she was 36 hours old. She has had some rough years but all in all is doing well. She is studying American Sign Language in College. I also have one holder daughter no CF, and a younger son no CF. I also have 3 grandchildern they don't have CF either. No one had CF in our families either but my niece now has CF, but there are 7 other ckildren on my husband's side and 6 on my side and only the 2 have CF. We have survived and you will also, just stay connected with others so you can talk and learn new things. I have learned so much on this site. judy CFF Mother > I am looking for other parents who have experienced having a child > with cf. I am 23 yrs. old, no history on cf, and have a month old > baby boy diagnosed at birth. I just need to know that I am not the > only one copeing with this disease. > > > > > ------------------------------------------- > 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 March 9, 2004 Report Share Posted March 9, 2004 Hi!! I'm Katy, and I am also 23 (will be 24 next week) and no you are not the only one. My daughter is 19 months old and was diagnosed when she was 4 months old. I'm glad that you found us. It has been a tremendous source of comfort and information for me. Katy Mom to Austin 4 no CF & Piper 19 months w/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 i am 26 and I have a 19month old boy Liam' mum to Liam Re: CFF Mother > Hi!! I'm Katy, and I am also 23 (will be 24 next week) and no you are not the only one. My daughter is 19 months old and was diagnosed when she was 4 months old. > > I'm glad that you found us. It has been a tremendous source of comfort and information for me. > > > > Katy > Mom to Austin 4 no CF & Piper 19 months w/CF > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2004 Report Share Posted March 9, 2004 You are not alone!!!! My daughter was diagnosed at 9 months. No CF on either side. the first 2 years were very hard for her, she was often sick but she has not been sick enough for the hospital in over 3 years and she has barely even had a cold! This group is a great support system!!!! I am sorry that your son has CF but know. it is really not the end of the universe. Grieve for what you didn't get (that absolutely perfect healthy child) and then get past it. Our kids are great and so is yours. He will grow up and make you laugh and make you frustrated, just like all the other kids in the world. He will be even stronger in spirit than you expect because he will have to put up with more early on than most people do. And ask lots of questions, of us, of the docs and anyone else who knows about CF. mom of 5 with CF and a boy on the way no CF (just a carrier) CFF Mother I am looking for other parents who have experienced having a child with cf. I am 23 yrs. old, no history on cf, and have a month old baby boy diagnosed at birth. I just need to know that I am not the only one copeing with this disease. ------------------------------------------- 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 March 9, 2004 Report Share Posted March 9, 2004 my son was dx at 10 days old, having had meconium ilius surgery at 11 hrs old. he will be 3 next month and is full of energy and is a wonderful little boy, he has had some issues, but you just take one day at a time. this group really helps. amy mom to nathan 3 w/cf To: cfparents <mailto:cfparents > Sent: Monday, March 08, 2004 9:02 PM Subject: CFF Mother I am looking for other parents who have experienced having a child with cf. I am 23 yrs. old, no history on cf, and have a month old baby boy diagnosed at birth. I just need to know that I am not the only one copeing with this disease. ------------------------------------------- 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 March 9, 2004 Report Share Posted March 9, 2004 Alone coping with this disease? No, not at all; and you certainly have come to the right list for this. Thank you for joining us! n Rojas. 66, with three adult " kids, " 2 carriers and one wcf--they all are over 38 years old, seem quite grown up--not sure about old Mom here? Love to you; dive right on in; the water is always fine on this list! Love, n Re: CFF Mother Welcome. I am glad that you found this group. How is your baby boy doing? I have a grandaughter that is now 2 years old and has cf. Gale > I am looking for other parents who have experienced having a child > with cf. I am 23 yrs. old, no history on cf, and have a month old > baby boy diagnosed at birth. I just need to know that I am not the > only one copeing with this disease. ------------------------------------------- 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 March 9, 2004 Report Share Posted March 9, 2004 I guess I forgot to add that I have cystic fibrosis myself, and am 66! n Rojas Re: CFF Mother Welcome. I am glad that you found this group. How is your baby boy doing? I have a grandaughter that is now 2 years old and has cf. Gale > I am looking for other parents who have experienced having a child > with cf. I am 23 yrs. old, no history on cf, and have a month old > baby boy diagnosed at birth. I just need to know that I am not the > only one copeing with this disease. ------------------------------------------- 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 March 9, 2004 Report Share Posted March 9, 2004 Hello Argelia, You are definitely not alone. There are alot of compassionate people on this list who have loads of advice and support for you. Though I have been dealing with the pressures of having twins wcf for 4 years, I continue to be educated and enlightened by this knowledgeable group of people. Best of luck to you and your baby. C Mommy to Mick and Alli, 4 yo twins wcf --- argelia1999 wrote: > I am looking for other parents who have experienced > having a child > with cf. I am 23 yrs. old, no history on cf, and > have a month old > baby boy diagnosed at birth. I just need to know > that I am not the > only one copeing with this disease. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2004 Report Share Posted March 10, 2004 Hi, I just wanted to join in this topic. I have 2 out of 3 children with CF. My oldest was diagnosed at 8 yrs old and my youngest was diagnosed at 1 month. They are 10 yrs apart and doing well. CF is a managable disease if you approach it with an open mind. Sometimes it is a daily battle sometimes it is an annoyance. It all depends on what it wants to do. At this point it is in your hands because of the age of your child. It is up to you to fight for the child and then teach your child how to fight it later on. Get info that you need not what is going to scare you. Know what you need to know not what applies to others. Fight this on your level. ALWAYS ask questions. Keep a notebook on what you want and need to know that way you can bring it to appointments and be prepared. This is the most difucult time because it is new. Everyone is affected differently but the battle is the same. The thing to remember is information can be power or a distraction. Don't take in what you are unable to understand and that will keep you strong. My goal is to keep them healthy but remain in as much of a normal life as possible. Somedays it works somedays it doesn't but I keep the same and that is what is important. Also don't be afraid to question your doctors or suggest things to them. I always do but it took time to get there. I have never really " dealt " with either diagnosis and never had time to waste doing so. I just roll with the punches. Meg Mom of Moe and Jack 13 and 3 with cf and Crohn's CFF Mother > > > I am looking for other parents who have experienced having a child > with cf. I am 23 yrs. old, no history on cf, and have a month old > baby boy diagnosed at birth. I just need to know that I am not the > only one copeing with this disease. > > > > > ------------------------------------------- > 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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