Guest guest Posted August 4, 2003 Report Share Posted August 4, 2003 Hi MY NAME IS KAREN, MY SON CODY WAS DIAGNOSED WITH CF AT 4 WEEKS. HE IS NOW 16 MONTHS AND DOING GREAT. KNOCK ON WOOD, HE HAS NEVER BEEN SICK, NOT EVEN A COLD. HE WEIGHS 24 1/2 POUNDS AND FULL OF ENERGY. HE DID HOWEVER CULTURE PSUEDEMONUS( I HOPE I SPELLED IT RIGHT) AT 9 MONTHS, BUT WAS TREATED AGGRESSIVELY AND HAD NOT CULTURED AGAIN. HE DOES TAKE ENZYMES BEFORE EVERY MEAL, CHEST PT EVERY DAY BUT OTHER THAN THAT IT HAS BEEN UNEVENTFULL THANK GOODNESS. I JUST RECENTLY TOOK OVER THE SUPPORT GROUP IN MY AREA (CONNECTICUT) AND I AM VERY EXCITED. IT IS SO NICE ALSO TO KNOW AND TALK TO SOME PARENTS WITH YOUNGER CHILDREN. I AM STILL AT THE LEARNING STAGE OF THE DISEASE BUT WOULD LOVE TO LEARN MORE. LOTS OF LOVE KAREN CODY 16 MONTHS W/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 WELCOME to this list too. You will meet so many folks who have some of same days as you too. It is wonderful to have others to share care & thoughts with LOVE & HUGS, grandmomBEV Hi New to the list Hi MY NAME IS KAREN, MY SON CODY WAS DIAGNOSED WITH CF AT 4 WEEKS. HE IS NOW 16 MONTHS AND DOING GREAT. KNOCK ON WOOD, HE HAS NEVER BEEN SICK, NOT EVEN A COLD. HE WEIGHS 24 1/2 POUNDS AND FULL OF ENERGY. HE DID HOWEVER CULTURE PSUEDEMONUS( I HOPE I SPELLED IT RIGHT) AT 9 MONTHS, BUT WAS TREATED AGGRESSIVELY AND HAD NOT CULTURED AGAIN. HE DOES TAKE ENZYMES BEFORE EVERY MEAL, CHEST PT EVERY DAY BUT OTHER THAN THAT IT HAS BEEN UNEVENTFULL THANK GOODNESS. I JUST RECENTLY TOOK OVER THE SUPPORT GROUP IN MY AREA (CONNECTICUT) AND I AM VERY EXCITED. IT IS SO NICE ALSO TO KNOW AND TALK TO SOME PARENTS WITH YOUNGER CHILDREN. I AM STILL AT THE LEARNING STAGE OF THE DISEASE BUT WOULD LOVE TO LEARN MORE. LOTS OF LOVE KAREN CODY 16 MONTHS W/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Hi Welcome to the group! I have three daughters and two of them have CF. This is a GREAT group you will found out everything there is about CF right here. There are a lot of experienced people right her that can help you whenever you need it. Deb A Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Welcome , This is a great place to learn. I'm glad to hear that you haven't had any major problems. I think early diagnosis is key in that. Feel free to visit our family's site at http://groups.msn.com/TeamJane Mom of , 4 and 1/2 with CF Hi New to the list Hi MY NAME IS KAREN, MY SON CODY WAS DIAGNOSED WITH CF AT 4 WEEKS. HE IS NOW 16 MONTHS AND DOING GREAT. KNOCK ON WOOD, HE HAS NEVER BEEN SICK, NOT EVEN A COLD. HE WEIGHS 24 1/2 POUNDS AND FULL OF ENERGY. HE DID HOWEVER CULTURE PSUEDEMONUS( I HOPE I SPELLED IT RIGHT) AT 9 MONTHS, BUT WAS TREATED AGGRESSIVELY AND HAD NOT CULTURED AGAIN. HE DOES TAKE ENZYMES BEFORE EVERY MEAL, CHEST PT EVERY DAY BUT OTHER THAN THAT IT HAS BEEN UNEVENTFULL THANK GOODNESS. I JUST RECENTLY TOOK OVER THE SUPPORT GROUP IN MY AREA (CONNECTICUT) AND I AM VERY EXCITED. IT IS SO NICE ALSO TO KNOW AND TALK TO SOME PARENTS WITH YOUNGER CHILDREN. I AM STILL AT THE LEARNING STAGE OF THE DISEASE BUT WOULD LOVE TO LEARN MORE. LOTS OF LOVE KAREN CODY 16 MONTHS W/CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Welcome to the group . :-) Dawn mom of 4, 7 and under, the youngest wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Hi , Welcome! You will learn so much here. Best of luck with the support group. Let us know how it goes. I had such a hard time getting our support group involved. Now I just do a newsletter on email. Love to you and Cody. Hope to hear more from you! Lenora in Colorado >Hi >MY NAME IS KAREN, MY SON CODY WAS DIAGNOSED WITH CF AT 4 WEEKS. HE >IS NOW 16 MONTHS AND DOING GREAT. KNOCK ON WOOD, HE HAS NEVER BEEN >SICK, NOT EVEN A COLD. HE WEIGHS 24 1/2 POUNDS AND FULL OF ENERGY. >HE DID HOWEVER CULTURE PSUEDEMONUS( I HOPE I SPELLED IT RIGHT) AT 9 >MONTHS, BUT WAS TREATED AGGRESSIVELY AND HAD NOT CULTURED AGAIN. HE >DOES TAKE ENZYMES BEFORE EVERY MEAL, CHEST PT EVERY DAY BUT OTHER >THAN THAT IT HAS BEEN UNEVENTFULL THANK GOODNESS. I JUST RECENTLY >TOOK OVER THE SUPPORT GROUP IN MY AREA (CONNECTICUT) AND I AM VERY >EXCITED. IT IS SO NICE ALSO TO KNOW AND TALK TO SOME PARENTS WITH >YOUNGER CHILDREN. I AM STILL AT THE LEARNING STAGE OF THE DISEASE >BUT WOULD LOVE TO LEARN MORE. > >LOTS OF LOVE >KAREN CODY 16 MONTHS W/CF > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Welcome !! You will really enjoy this list--you've come to the right place. I also have a Cody with CF--he is 7-1/2 now, and was diagnosed at 3 days old, due to meconium ileus causing them to do a sweat test, which came out very, very positive (I believe his count was 118, and they were amazed by that, since babies usually don't sweat all that well). It's been a real rollercoaster of a ride with him, but worth every minute! S., mom to Cody (7, pwcf), DJ (9, nocf), and a (14, nocf) Hi New to the list > Hi > MY NAME IS KAREN, MY SON CODY WAS DIAGNOSED WITH CF AT 4 WEEKS. HE IS NOW 16 MONTHS AND DOING GREAT. KNOCK ON WOOD, HE HAS NEVER BEEN SICK, NOT EVEN A COLD. HE WEIGHS 24 1/2 POUNDS AND FULL OF ENERGY. HE DID HOWEVER CULTURE PSUEDEMONUS( I HOPE I SPELLED IT RIGHT) AT 9 MONTHS, BUT WAS TREATED AGGRESSIVELY AND HAD NOT CULTURED AGAIN. HE DOES TAKE ENZYMES BEFORE EVERY MEAL, CHEST PT EVERY DAY BUT OTHER THAN THAT IT HAS BEEN UNEVENTFULL THANK GOODNESS. I JUST RECENTLY TOOK OVER THE SUPPORT GROUP IN MY AREA (CONNECTICUT) AND I AM VERY EXCITED. IT IS SO NICE ALSO TO KNOW AND TALK TO SOME PARENTS WITH YOUNGER CHILDREN. I AM STILL AT THE LEARNING STAGE OF THE DISEASE BUT WOULD LOVE TO LEARN MORE. > > LOTS OF LOVE > KAREN CODY 16 MONTHS W/CF > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Hello my name is Ashauna. My son is seven months old and was born with meconium ileus as well. He had his operation to remove a mal-rotation at 2 days of age. I fee very new to all of this trying to find out all that I can about it. I am really wanting to get involved in any way possible, but have found it very hard to get started. Perhaps out of fear of the stories that break my heart, and understanding the reality of what my son and our family are going to have to face. This is the first time that I have really started talking with others about it. Well outside of our clinic. Thanks for letting me talk even if it is on computer it helps. Also I do not know if you have used this message system for a while, but if so could you explain to me kindof how it works. I am afraid that I am very illiterate when it comes to things like this . WILLING TO LEARN!!!!!!!! Right now the only way that I get the messages is through my e-mail service. I was on line at the web site and did not know where to start. Please do not think that this is crazy. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 Hey, and we will learn from you, too; we are all on this cruise to (we hope) a cure together! Love to you and yours, n Rojas, wcf, 3 kids (adults), youngest wcf, etc. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 This is exactly what you do . WELCOME to a great lists .There are many & most are on all . You will learn .so very much & the " fear " will take a back seat to learning. People on these list come from all over the world, in fact. My granddaughter also had the mecomium iliues at birth . surgery on second day. She is now a sophomore at ASU in Boone , N.C. She has been a very sports active gal . Was 1st in her state high school cross country in her last 2 years of high school -----also an A student . See......you have much to look forward to...... EXERCISE is very important .we had her on a baby trampoline & swimming in pool at " months " old. also, a picky eater , but she did fine as we went on........ If your clinic hasn't given you any literature ( & even if they have) I will be happy to send some info that might help in a small way to see it all these aren't by Drs Doom & Gloom , but more by Dr FEELGOOD......... This is not to say there aren't so rough roads or flat tires on this trip . But the mechanics & the service stations are great. good maintance & service & daily care ....along with a full tank of gas.. & we are all on our way thru our CF World........Sorry your here BUT GLAD to have you with us . TOGETHER , we will beat this ugly disease. Gots to go . I am tired . Just got in from another grandchild's basket ball game-YEAH...they won. (I have 10 grandkiddo;s . they are great!! LOVE & HUGS< GRANDMOMBEV oops, Send me a mailing addy if you'd like some info on CF .......... Re: Hi New to the list Hello my name is Ashauna. My son is seven months old and was born with meconium ileus as well. He had his operation to remove a mal-rotation at 2 days of age. I fee very new to all of this trying to find out all that I can about it. I am really wanting to get involved in any way possible, but have found it very hard to get started. Perhaps out of fear of the stories that break my heart, and understanding the reality of what my son and our family are going to have to face. This is the first time that I have really started talking with others about it. Well outside of our clinic. Thanks for letting me talk even if it is on computer it helps. Also I do not know if you have used this message system for a while, but if so could you explain to me kindof how it works. I am afraid that I am very illiterate when it comes to things like this . WILLING TO LEARN!!!!!!!! Right now the only way that I get the messages is through my e-mail service. I was on line at the web site and did not know where to start. Please do not think that this is crazy. Thank you ------------------------------------------- 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 August 5, 2003 Report Share Posted August 5, 2003 thanks for the positive words. You know I was looking in another room earlier today and found a message of a woman looking for advice about having children. somehow her husband found out that he was a cf carrier...... not sure of the details..... anyways she went to her doctor and asked if he would run the test for her......or recommend it. that doctor actually had the nerve to tell her that she should not even consider having children knowing that one parent was the carrier. He was so heartless and incorrect in his statement that it was heart breaking. Anyways he told her that she was just going to put her child through a terrible murdering disease. Sometimes all we get is negative from these dr's at times it makes me ill. I have found that in some cases I already know more about this disease than many dr's. Thanks again for words of hope and happiness. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2003 Report Share Posted August 5, 2003 hi, welcome! my son is 27 months and was born with meconium ilius also had a colostomy at 11 hrs old. im 41 and didn't think I could have a child so he is truly a blessing. the first 6 months I didn't even want to read or talk much about the cf, but now im like a sponge , I want to know everything ! and I want to raise awarness for this awful disease, the more people who know about it, the more people will help find a cure! get involved in great strides in your area, cf foundations walk for a cure, this year our team raised over $ 7,000! good luck and best wishes. Amy mom to a very active 2 yr old with cf! Re: Hi New to the list Hello my name is Ashauna. My son is seven months old and was born with meconium ileus as well. He had his operation to remove a mal-rotation at 2 days of age. I fee very new to all of this trying to find out all that I can about it. I am really wanting to get involved in any way possible, but have found it very hard to get started. Perhaps out of fear of the stories that break my heart, and understanding the reality of what my son and our family are going to have to face. This is the first time that I have really started talking with others about it. Well outside of our clinic. Thanks for letting me talk even if it is on computer it helps. Also I do not know if you have used this message system for a while, but if so could you explain to me kindof how it works. I am afraid that I am very illiterate when it comes to things like this . WILLING TO LEARN!!!!!!!! Right now the only way that I get the messages is through my e-mail service. I was on line at the web site and did not know where to start. Please do not think that this is crazy. Thank you ------------------------------------------- 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 August 5, 2003 Report Share Posted August 5, 2003 THANKS FOR THE INFO. GREAT STRIDES I WILL DO THAT. IS IT SOMETHING THAT I CAN VOLUNTEER FOR I HOPE YOUR SON IS DOING WELL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 I think that most of us get these messages through our e-mail, don't worry I'm computer illiterate too! CF is so different for each child that whatever you hear may be unique to you or there may be 20 of us on this list with the same problem. Knowing what could be down the road and having a handle on how you want to deal with it may help if the problems come up. Please check out our family site at http://groups.msn.com/TeamJane and read 's story. Her rough start was very hard but she has been well for over 2 & 1/2 years. Mom of 4 & 1/2 with CF Re: Hi New to the list Hello my name is Ashauna. My son is seven months old and was born with meconium ileus as well. He had his operation to remove a mal-rotation at 2 days of age. I fee very new to all of this trying to find out all that I can about it. I am really wanting to get involved in any way possible, but have found it very hard to get started. Perhaps out of fear of the stories that break my heart, and understanding the reality of what my son and our family are going to have to face. This is the first time that I have really started talking with others about it. Well outside of our clinic. Thanks for letting me talk even if it is on computer it helps. Also I do not know if you have used this message system for a while, but if so could you explain to me kindof how it works. I am afraid that I am very illiterate when it comes to things like this . WILLING TO LEARN!!!!!!!! Right now the only way that I get the messages is through my e-mail service. I was on line at the web site and did not know where to start. Please do not think that this is crazy. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Welcome; what will surprise you is that we will learn from you on this list and all together on this cruise ship going--we hope--toward a cure, we will get there together; the crew is great (webmaster and moderators), passengers are not only supportive and informative, but of good nature and have been known to be humorous to the point of hilarity despite the nature of our topic. I suppose a few get a little sea sick, but most survive it and thrive. As you may have gathered, I just love this list. I hope that you do also. Thank you for adding to the list! n Rojas, wcf, Mom of 3,2 cf carriers, youngest wcf, too Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Yes, go to www.CFF.org and click on the greatstrides icon. most of the walks are done by now but some places pick up again in the fall. Re: Hi New to the list THANKS FOR THE INFO. GREAT STRIDES I WILL DO THAT. IS IT SOMETHING THAT I CAN VOLUNTEER FOR I HOPE YOUR SON IS DOING WELL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Thanks Ashauna Quote Link to comment Share on other sites More sharing options...
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