Guest guest Posted September 20, 2000 Report Share Posted September 20, 2000 Janet Congrats on the excellent checkup. As far as the newsletter goes, I guess that I don't get it. Is it the one the clinics have occasionally? If so, we do see it haphazardly...if there are copies left when we happen to go to clinic, etc. How did you get on the mailing list? As far as replies, the last time I remembered you posting it was about your kids last visit, and I thought several psople replied with congrats on the good visit, but thats been awhile.... I notice that people often don't post replies when people send articles, etc to the list, and since you do that alot, maybe people just don't want to take up list space with a thanks. People on this list have generally been pretty good about replying to post about updates on kids, etc, however, at least in my observation.... of course, sometimes, people think they don't have alot to offer in return, and therefore don't reply. You always seem to have it so " together " , so perhaps people don't feel they have much to offer. My own posts get varied response, depending on the nature of the post. I think most frequently, people respond if they know something about the issue being discussed, and otherwise don't post back unless they have a question. Anyway, its great news that your kids are now pseudo free for a year. I wonder why more docs don't try the daily tobi forever thing, as opposed to the 28 day on and off regie. Sometimes I wish our doc would consider that with Mallory, since its her off months that always seem to be the bad months..... of course, on the flip side, someone once said, if only mothers could create extra hours in the day.....I just figured out how.... Last night I found myself with time on my hands...and, trying to figure out why...til I realized its b/c we are starting an off tobi month......which means 6 fewer nebs (total, from all 3 kids) for the next 28 days, thats a savings of a little over 2 hours a day for Mommy (if you add....cleaning nebs and set up, etc more like 2 1/2) course, if someone told me that they thought doing tobi daily is better, (like the doc), then I would do it in a heartbeat, with our without the saved 2 hrs a day take care Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2000 Report Share Posted September 20, 2000 Folks, My two kids just had another great checkup and I wanted to share my joy. Mattthew, who will be six at the end of October, had clear cultures (normal respiratory flora, no CF bugs) again. He has been pseudo free for a year now. His growth continues to amaze everyone, he is above the 95th percentile for weight (he's over 60 pounds). He gained a lot of height since his last visit and now is between the 90th and 95th percentile (he's 48 inches or so). has nasal polyps but they appear to be well controlled with daily flonase. , who is three, also had clear cultures again. She has also been pseudo free for a year. She is over 41 pounds, which puts her above the 95th percentile for weight, too. She is gaining in height percentiles now, too, she is now just above the 75th percentile for height at 40 inches tall. The CF nurse told me that in her entire career my children are the healthiest CF kids she has ever encountered. I have to say that they rarely even get colds. This makes me feel strange. On the one hand, I am very grateful for my children's good progress. We have chosen to adopt an extremely aggressive preventative medical regimen for our children, which appears to be paying off for them despite the considerable burden it places us under. On the other hand, however, is this continued fear that one day the other shoe will drop and my kids will begin to follow the more typical CF patterns despite all our efforts. My mother and my husband chide me for this, and call me a pessimist. I don't view it that way, really... I'm just a pragmatist. My kids doctor says that every year we can keep the kids lungs clear of CF bacteria is a year in the bank toward surviving until a cure is found, and every pound of body weight is reserves to fight off any future infections. I guess I do find this comforting. I don't post often, and I rarely get replies when I do, but thanks for listening. Janet PS -- By the way, did anyone see my column in the CF Pharmacy's newsletter? This is my third one... does anyone but me actually get it and read it or am I wasting my time? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2000 Report Share Posted September 20, 2000 Hi Janet, I am very glad your kids are so healthy !!!! congratulations !!!! What is your " extremely aggressive preventative medical regimen " ? When you say that you rarely get replies when you post.... hum I feel a little bit like you.. sometimes I even wonder if my messages get distributed to the whole list.. lol One day I answered a message about Preimplantation diagnostic and a couple hours later someone asked exactly what I had answered :-(((( .... Anyway, this must be the way we are punished for not participating enough to the list ;-) , Mom to Leo wcf 22 months and pregnant soon 2 months of ?????? P.S. How does one get the CF Pharmacy Newsletter -----Message d'origine----- De : weiner.janet@... Envoyé : mercredi, 20. septembre 2000 09:44 À : cfparentsegroups Objet : good checkup news Folks, My two kids just had another great checkup and I wanted to share my joy. Mattthew, who will be six at the end of October, had clear cultures (normal respiratory flora, no CF bugs) again. He has been pseudo free for a year now. His growth continues to amaze everyone, he is above the 95th percentile for weight (he's over 60 pounds). He gained a lot of height since his last visit and now is between the 90th and 95th percentile (he's 48 inches or so). has nasal polyps but they appear to be well controlled with daily flonase. , who is three, also had clear cultures again. She has also been pseudo free for a year. She is over 41 pounds, which puts her above the 95th percentile for weight, too. She is gaining in height percentiles now, too, she is now just above the 75th percentile for height at 40 inches tall. The CF nurse told me that in her entire career my children are the healthiest CF kids she has ever encountered. I have to say that they rarely even get colds. This makes me feel strange. On the one hand, I am very grateful for my children's good progress. We have chosen to adopt an extremely aggressive preventative medical regimen for our children, which appears to be paying off for them despite the considerable burden it places us under. On the other hand, however, is this continued fear that one day the other shoe will drop and my kids will begin to follow the more typical CF patterns despite all our efforts. My mother and my husband chide me for this, and call me a pessimist. I don't view it that way, really... I'm just a pragmatist. My kids doctor says that every year we can keep the kids lungs clear of CF bacteria is a year in the bank toward surviving until a cure is found, and every pound of body weight is reserves to fight off any future infections. I guess I do find this comforting. I don't post often, and I rarely get replies when I do, but thanks for listening. Janet PS -- By the way, did anyone see my column in the CF Pharmacy's newsletter? This is my third one... does anyone but me actually get it and read it or am I wasting my time? *********************** 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 September 20, 2000 Report Share Posted September 20, 2000 Janet, Congratulations on the great check-ups. 's weight just amazes me. My son, , who is 6 1/2 weighs 54 pounds, but he doesn't have CF! So that gives you an idea at how great is doing. And my 3-year-old daughter, who does have CF, weighs 29 pounds. I'm not sure how tall she is. She is finally on the charts for weight and height for the first time ever. I know what you mean about feeling like the other shoe will eventually drop, but I think your doctor is right in that everyday of good health helps. That is why I think we are all so careful to keep our kids away from viruses and unhealthy situations. I don't use the CF Pharmacy so I've never seen that newsletter. Maybe once in a while you could post one of your articles for the list to read? Lori in Florida, Mom to , 6, ncf and Mycah, 3 wcf good checkup news > > > > Folks, > My two kids just had another great checkup and I wanted to share my joy. > > Mattthew, who will be six at the end of October, had clear cultures (normal > respiratory flora, no CF bugs) again. He has been pseudo free for a year now. > His growth continues to amaze everyone, he is above the 95th percentile for > weight (he's over 60 pounds). He gained a lot of height since his last visit > and now is between the 90th and 95th percentile (he's 48 inches or so). > has nasal polyps but they appear to be well controlled with daily > flonase. > > , who is three, also had clear cultures again. She has also been pseudo > free for a year. She is over 41 pounds, which puts her above the 95th > percentile for weight, too. She is gaining in height percentiles now, too, she > is now just above the 75th percentile for height at 40 inches tall. > > The CF nurse told me that in her entire career my children are the healthiest CF > kids she has ever encountered. I have to say that they rarely even get colds. > This makes me feel strange. On the one hand, I am very grateful for my > children's good progress. We have chosen to adopt an extremely aggressive > preventative medical regimen for our children, which appears to be paying off > for them despite the considerable burden it places us under. On the other hand, > however, is this continued fear that one day the other shoe will drop and my > kids will begin to follow the more typical CF patterns despite all our efforts. > My mother and my husband chide me for this, and call me a pessimist. I don't > view it that way, really... I'm just a pragmatist. > > My kids doctor says that every year we can keep the kids lungs clear of CF > bacteria is a year in the bank toward surviving until a cure is found, and every > pound of body weight is reserves to fight off any future infections. I guess I > do find this comforting. > > I don't post often, and I rarely get replies when I do, but thanks for > listening. > > Janet > > PS -- By the way, did anyone see my column in the CF Pharmacy's newsletter? > This is my third one... does anyone but me actually get it and read it or am I > wasting my time? > > > > *********************** > 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 September 20, 2000 Report Share Posted September 20, 2000 Janet, It is great that your kids are so healthy!!! Maybe no one is replying because they are all jealous! :-) just kidding. Anyway, would you care to share with us what your aggressive treatment is? What your kids take, etc. I'm sure we could all use some tips. _________________________________________________________________________ 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 September 20, 2000 Report Share Posted September 20, 2000 Janet WOOHOO. Great job. It sounds like everything you are doing is working. I am very glad that your kids are doing so well. Jodi ________________________________________________________________ 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 September 20, 2000 Report Share Posted September 20, 2000 , Congrats on being pregnant! Do you know what your having yet? Jodi ________________________________________________________________ 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 September 22, 2000 Report Share Posted September 22, 2000 They say girls are much easier then boys to potty train. I may never know. Jodi My daughter was completely trained by 2.5, that was > nice! > :-) > > gina ________________________________________________________________ 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...
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