Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 , Welcome to the list. At least for us, personally, the first year was the hardest. there are also some CF " milestones " that are hard, and sometimes like hearing the diagnosis all over again. For us, getting the first Pseudo culture was like that. When Mallory got her port, I guess that was like that as well. Many many of the kids on this list do really really well. So, I hope you find some comfort in that. The younger kids on the list who do have more problems, usually it seems to be related to something else other than " just " the CF. (in Mallory's case, for example, we blame it on two RSV episodes in 3 months....but Becky has us beat, wow Becky, 3 RSV episodes in 3 months!!!) As young as your son is, you might want to really do everything you can to keep him from getting RSV, of course, thats just another Mommy's opinion. Is he gonna get synagis this winter? I think you will find this list a great avenue of support. For us, it has been our lifeline at times. I don't know if this makes any sense, but for us....with people we see every day, friends, family, and even (or perhaps especially) the kids docs, we like to act like we have everything under control and we are perfectly ok. At least thats how we cope....the more we " act " ok, the more we " are " ok, so to speak. Anyway, but you gotta be able to vent, and perhaps " lose it " somewhere, and somehow many of us find it so much easier to do that with this group of folks, who truly understand, and who won't judge you..... With friends and family, they are often well meaning, but don't really have a clue, or even sometimes can be annoying. With the docs, we worry if we show if we are upset, they will not give us important info. so as not to worry us any more than we already are, for example. Anyway, this is a terrific place also to share ideas. I have learned so much from all these wonderful folks, from how to give enzymes to the little ones, to what to do when meds taste yucky, to how to manage home ivs, etc.....whatever the issue is, somehow everyone on the list is able to put their heads together and usually, someone has the wonderful idea that works..... And we have so many friends from the list, that we would never have had otherwise. The value of this and the other lists is truly immeasurable..... Let us know what you need. OH, and info on us is after my signature....we live in Tennessee, by the way, where are you? Take care Jen Mommy of 7, including ph 15 months with CF, Mallory 2 with CF, RAD, GERD, OSA, new port-a-cath; 4 with CF; 6, Miranda 8, Brittany 7 yo foster daughter soon to be adopted by us; ERica 4 yo foster daughter, soon to be adopted by us also ; also aunt to 3 yo with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 DEAR JULIE, I would love to send you some literature and some POSITIVE tapes about CF. You will learn words, terms and see happy growing little ones. Also some parents telling it like it was for them....and you will " hear yourself " Most feel the same >.lost -scared-guilty.....hurt ...MAD. everything.< But , you are " going to get over that " and return to a semblance of normal .What will be normal for you and you will be happier as you grow and understand more. This is the place to get that info, From folks who have been there -----done that. I can give you the medical, techno, and practical info brochures as well. The " stuff " together will help you be the best parents of a baby with CF there is!!! send me your mailing address here. I'll send out from the office in the morning. ----if you'd like. I am just a grandparent but do care deeply and have tried to learn as much as there is ....so I could pass it on. She is 16 now and in the 11th grade ...very well. LOVE & HUGS, GRANDMOMBEV New Diagnosis Hi everyone. My name is and I have a beautiful 2yr old little boy who was just diagnosed with cf in july. His name is Gage. We're only 3 months in and I'm still completly terrified. I'm having more good days now, but it was just such a shock. I would really love to hear from other parents on how they are dealing with this and on how their kids are doing. Any words of support or advice will be greatly appreciated. Thanks so much _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. *********************** This is a secular list. *********************** 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. -------------------------------------------------- Our webpage is at http://www.eohio.net/malbright/cfparents.htm _________________________________________________ Post message: cfparentsegroups Subscribe: cfparents-subscribeegroups Unsubscribe: cfparents-unsubscribeegroups List owner: cfparents-owneregroups _________________________________________________ WE HAVE A CHAT PAGE!!! /chat/cfparents _________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 , You just hang in there, things will seem better as time passes! My Levi is two and a half, diagnosed at birth with meconium ileus. I still have some really bad days, but for the most part, I've coped with it all as well as anyone can. (I may not seem all that well-adjusted, but I was this way before I had Levi! so I really can't blame EVERYTHING on the diagnosis...) I know (as we all do here) that at first you just seem so overwhelmed that it's like being burried under the weight of the cf diagnosis, but you'll dig your way out of that and see some light! We are all here to lean on one another, so feel free to lean! I hope you find reassurance on this list. It really does get better, you just have to " tough out " the early months. ~ mommy to 3, 1 wcf ===== ********************************************** Do not walk behind me, for I may not lead. Do not walk ahead of me, for I may not follow. Do not walk beside me... just leave me alone. ********************************************** __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2000 Report Share Posted October 3, 2000 , my CFer, who was quite sick as a child, got better with pulmozyme, albuterol and just maturity; she is now 34 and 5' tall in a family of giants. She hates being short, but since her enzymes were increased, she ismore comfortable, gopes to school and works full time; there is hope for some of us! n wcf and mom of 3, 1 wCF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 >Some days I feel so overwhelmed with everything there is to do. Do you >do the allude or pulmozyme treatments. We do both. What's allude????? _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 Hi , welcome to the list! I hope we can hep you a bit in coping with the diagnosis. >From my point of view I am currently in Phase 3 in dealing with CF. Phase 1 was shock and grievance, which lasted almost one year. The next two years I spent collecting information about CF like crazy and e-mailing to each and everyone. Now in Phase 3 I try to relax, enjoy my being a dad and watch Fiona grow up. Fortunately she is doing very well, without any major problems aside from her refusal to eat larger quantities of solid food. But she thrives big time on formula and pulp. Since you have found the internet right after the dx, you can do Phase 1 and 2 together, which hopefully cuts short the time of grievance. You will see, that quite a lot of the kids with CF are doing well and that the medical treatments get better every day. This year I have started to get more involved in the work of our nationwide CF-support club and try to become the contact person for research questions. Therefore I receive some interesting information from time to time, which I offer to the list. Bye-bye Torsten, dad of Fiona 3.5wcf e-mail: aberdeen95@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 , I am so sorry that you are going through this. We learned in March that my (now 9 month old, then 3 month old) has CF. I asked the social worker at the CF clinic if they had any support groups and they didn't. I didn't even think of the Internet until a few weeks ago. It has been very informative. I sometimes still get really terrified too. It seems every time we go to the doctor we have something new for him to have in addition to the CF. This is not usually the case, but he was born 2 months early, his intestine got a hole in it and at 3 days he had surgery, spinal meningitis, now they think he could have cerebral palsy. His CF doctor says he is only the size of a 4 month old and thinks that he is developing at that rate and not to worry. YA RIGHT!. Where do you live? We live in Utah and Primary Children's Hospital in SL has a great CF center. The doctor he usually sees is very supportive. Some days I feel so overwhelmed with everything there is to do. Do you do the allude or pulmozyme treatments. We do both. We also have lots to do with his slow development. Are you feeling overwhelmed with everything. Do you work outside of the home? What made them diagnose Gage? Now that my thoughts are with you. Jodi On Tue, 03 Oct 2000 23:19:37 EDT " julie wagoner " writes: > Hi everyone. My name is and I have a beautiful 2yr old little > boy who > was just diagnosed with cf in july. His name is Gage. We're only 3 > months > in and I'm still completly terrified. I'm having more good days > now, but it > was just such a shock. I would really love to hear from other > parents on > how they are dealing with this and on how their kids are doing. Any > words > of support or advice will be greatly appreciated. > Thanks so much > > _________________________________________________________________________ > Get Your Private, Free E-mail from MSN Hotmail at > http://www.hotmail.com. > > Share information about yourself, create your own public profile at > http://profiles.msn.com. > > > -------------------------- eGroups Sponsor > > *********************** > This is a secular list. > *********************** > > > 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. > > -------------------------------------------------- > > > Our webpage is at http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsegroups > Subscribe: cfparents-subscribeegroups > Unsubscribe: cfparents-unsubscribeegroups > List owner: cfparents-owneregroups > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > /chat/cfparents > _________________________________________________ > > > ________________________________________________________________ YOU'RE PAYING TOO MUCH FOR THE INTERNET! Juno now offers FREE Internet Access! Try it today - there's no risk! For your FREE software, visit: http://dl.www.juno.com/get/tagj. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2000 Report Share Posted October 4, 2000 , I would also like to welcome you to this list. I have really enjoyed and learned from the other parents. We have picked up tips and tidbits that you might not learn at the clinic. My son is 2 1/2 and doing great (dx at 3 weeks). He has no problem with weight gain but he is on enzymes, he is in the 90% (or so) for height and weight. We use the vest for his cpt, twice a day for 30 minutues. This has been a life saver, he was getting so big to do cpt in our laps and at the time we lived in a very small apartment and had no place for the bd board. During the vest we do a neb of mucosmist and albuterol. He is on supplemental vitamins and ADEK. We go back to the CF clinic the 26th so we hope that he has picked up any bugs. I am also guesing that we will get our flu shots, my favorite. Take care, your in my thoughts. Angie from Minnesota Quote Link to comment Share on other sites More sharing options...
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