Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 Hi Tammy! Heath sounds like my youngest, Alli. And sort of . We have still not gotten a definite diagnosis, yet. But Alli has trachea malacia and reflux too. always complains about her tummy hurting. Looking to hear from you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 Welcome Tammy Dawn New to List > Hi! Have been reading the posts for a little while now and thought > that I should introduce myself. I am a single mother of four, Kendra > 13wocf, Dalton 11wocf, Cheyenne 4wocf and Heath 5wcf(we call him > Cowboy) he also has tracheal malaise, reflux, ulcer and has lots of > headaches and is always complaining about his stomach hurting. He was > diagnosed when he was a little over 2 years old. The posts have been > helpful and interesting, have been learning from them, so glad that I > found you all. > > Tammy mother of four one wcf > tmmrssll@... > > > > 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 June 9, 2001 Report Share Posted June 9, 2001 HI Tammy Welcome. You certainly have your hands full. Take care, Stein.......mom to CF (1yr) & Tori wo/CF (3 1/2 yr) New to List Hi! Have been reading the posts for a little while now and thought that I should introduce myself. I am a single mother of four, Kendra 13wocf, Dalton 11wocf, Cheyenne 4wocf and Heath 5wcf(we call him Cowboy) he also has tracheal malaise, reflux, ulcer and has lots of headaches and is always complaining about his stomach hurting. He was diagnosed when he was a little over 2 years old. The posts have been helpful and interesting, have been learning from them, so glad that I found you all. Tammy mother of four one wcf tmmrssll@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 Welcome, Sheila! I know you will enjoy being a part of this group (if you want to get to know more about everyone, go to the website and go to the archives--in the last week or so, A LOT of us have been sending in introductions of ourselves to help all the new people--and ourselves--get to know each other). There are a lot of really great people here, and it seems as though no matter what question you have, there will be SOMEONE who can answer it! As far as the average age--I swear it changes daily! LOL It just keeps getting higher and higher. Currently I believe our clinic averages their own population to be around 39 or 40 (but it's been about two years since I last heard, so it could be higher), and nationally I believe it's a bit lower than that--then there's those like n (YOU GO, GIRL!!!!!!)--63 and still going strong!!! And as for a cure--sigh, I don't think " close " will ever be close enough for me until it's a reality! , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7) smichelle15@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Welcome to the list Sheila. What a good Aussie name that is! I'm sorry to hear another child has been dx. Have you got a good support system? Where do you live? New to List > Hello, > > I wanted to introduce myself to everybody. I am the mother of two beautiful > girls, ages 4, and 16 months. My 4 year old was just diagnosed with CF last > week. She has suffered from a prolapsed rectum for over two years and has > had problems with her digestive system since birth. My 16 month old has not > been tested yet, but I doubt she will test positive. We were relieved to > finally have an answer as to what was wrong with Makenzie, but we were > devastated to find out it was CF. My brain feels like mush from all the > information I have been absorbing. I hope to learn a lot through all of > you. I have a lot of questions that I am sure some of you can help me > with. I won't dump them all on you at once. I know that my doctor said > they are so close to a cure, but how close is close? And, what is the > average age these days that people with CF are living to? I hope to hear > from you all soon. Thanks. > > Sheila Goff > > > > 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 July 14, 2001 Report Share Posted July 14, 2001 Sheila; I promise not to send ANY information to you personally, untill you get used to us, but cannot promise that some won't slip past your eyes to others; I don't mind if you delete all of mine; I know of one person on the list who already does! Brave soul! Welcome aboard; you'll be less seasick after about two weeks! n J. Rojas wcf, Family Liaison person at CFRI (Cystic Fibrosis Research, Inc.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Thanks for the welcome! Everybody has been great on this list and so very nice. I live in Texas and so far the team at Cook's Children's Hospital, in Fort Worth, have been wonderful. It was overwhelming at first visist because we must have met with 6 to 8 different people, all of whom I like. I am so glad I have found this list. I am not so sure my husband is-lol-because I am stuck to the computer like glue..... Sheila Baxter wrote: > Welcome to the list Sheila. What a good Aussie name that is! I'm > sorry to > hear another child has been dx. Have you got a good support system? > Where > do you live? > > > New to List > > > > Hello, > > > > I wanted to introduce myself to everybody. I am the mother of two > beautiful > > girls, ages 4, and 16 months. My 4 year old was just diagnosed with > CF > last > > week. She has suffered from a prolapsed rectum for over two years > and has > > had problems with her digestive system since birth. My 16 month old > has > not > > been tested yet, but I doubt she will test positive. We were > relieved to > > finally have an answer as to what was wrong with Makenzie, but we > were > > devastated to find out it was CF. My brain feels like mush from all > the > > information I have been absorbing. I hope to learn a lot through > all of > > you. I have a lot of questions that I am sure some of you can help > me > > with. I won't dump them all on you at once. I know that my doctor > said > > they are so close to a cure, but how close is close? And, what is > the > > average age these days that people with CF are living to? I hope to > hear > > from you all soon. Thanks. > > > > Sheila Goff > > > > > > > > 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 July 16, 2001 Report Share Posted July 16, 2001 Hi Dawn, Our doctor is Dr. Hadeed. Have you heard of him? I have heard of Dr. Dambro. They are a great group. We live in Arlington so we are really close to the Hospital. My husband used to hunt on a lease there in Graham. What kind of work is looking for? Maybe I can help. Arlington is a great place to live because it is in between everything. I actually work in Dallas and my husband works in Irving. We live in Arlington but we are in the Mansfield school district which is smaller and really good. Mansfield is a nice place to live, too. I wouldn't mind moving more into Mansfield close to the Super Wal-Mart, LOL. Let me know if I can help with the job hunting. I have lived in this area all my life. Sheila > Re: New to List > > Who is your dr. Sheila? We see Dr. Dambro there at Cook's. She and > the rest of the CF team there are really tip top and ever so nice. I > couldn't have met a nicer staff when we had Patti in for two and a half > weeks in January. Where do you live? We live in Graham, which is about > and > hour and a half west of Ft. Worth. is currently job hunting and we > hope to find something in the metroplex so that we can be closer to Cooks. > > Dawn mom of 4, 5 and under the youngest with CF > New to List > > > > > > > > > > Hello, > > > > > > > > I wanted to introduce myself to everybody. I am the mother of two > > > beautiful > > > > girls, ages 4, and 16 months. My 4 year old was just diagnosed with > > > CF > > > last > > > > week. She has suffered from a prolapsed rectum for over two years > > > and has > > > > had problems with her digestive system since birth. My 16 month old > > > has > > > not > > > > been tested yet, but I doubt she will test positive. We were > > > relieved to > > > > finally have an answer as to what was wrong with Makenzie, but we > > > were > > > > devastated to find out it was CF. My brain feels like mush from all > > > the > > > > information I have been absorbing. I hope to learn a lot through > > > all of > > > > you. I have a lot of questions that I am sure some of you can help > > > me > > > > with. I won't dump them all on you at once. I know that my doctor > > > said > > > > they are so close to a cure, but how close is close? And, what is > > > the > > > > average age these days that people with CF are living to? I hope to > > > hear > > > > from you all soon. Thanks. > > > > > > > > Sheila Goff > > > > > > > > > > > > > > > > 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 July 16, 2001 Report Share Posted July 16, 2001 is a chemical engineer and has been working the past nine years in process engineering, safety, and environmental compliance. Mansfield sounds nice. We are looking for housing that is a bit rural. We don't like to be stacked in with neighbors. :-) We are hoping to live outside of the metroplex and let comute in. I don't know if it will happen though. Dawn New to List > > > > > > > > > > > > > Hello, > > > > > > > > > > I wanted to introduce myself to everybody. I am the mother of two > > > > beautiful > > > > > girls, ages 4, and 16 months. My 4 year old was just diagnosed with > > > > CF > > > > last > > > > > week. She has suffered from a prolapsed rectum for over two years > > > > and has > > > > > had problems with her digestive system since birth. My 16 month old > > > > has > > > > not > > > > > been tested yet, but I doubt she will test positive. We were > > > > relieved to > > > > > finally have an answer as to what was wrong with Makenzie, but we > > > > were > > > > > devastated to find out it was CF. My brain feels like mush from all > > > > the > > > > > information I have been absorbing. I hope to learn a lot through > > > > all of > > > > > you. I have a lot of questions that I am sure some of you can help > > > > me > > > > > with. I won't dump them all on you at once. I know that my doctor > > > > said > > > > > they are so close to a cure, but how close is close? And, what is > > > > the > > > > > average age these days that people with CF are living to? I hope to > > > > hear > > > > > from you all soon. Thanks. > > > > > > > > > > Sheila Goff > > > > > > > > > > > > > > > > > > > > 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 July 16, 2001 Report Share Posted July 16, 2001 Dawn, I don't know if you have ever been to Cleburne or Burleson, but those are excellent towns. I especially like Cleburne and even though it is small it still has a mall and Wal-Mart. LOL Can you tell I like Wal-Mart? We have a little saying here at work " If you can't find it at Wal-Mart then you don't need it. " If I here of anything I will let you know. In the meantime, I wish y'all lots of luck and keep me posted if you move closer to me. Sheila > Re: New to List > > is a chemical engineer and has been working the past nine years in > process engineering, safety, and environmental compliance. Mansfield > sounds > nice. We are looking for housing that is a bit rural. We don't like to > be > stacked in with neighbors. :-) We are hoping to live outside of the > metroplex and let comute in. I don't know if it will happen though. > > Dawn > New to List > > > > > > > > > > > > > > > > Hello, > > > > > > > > > > > > I wanted to introduce myself to everybody. I am the mother of > two > > > > > beautiful > > > > > > girls, ages 4, and 16 months. My 4 year old was just diagnosed > with > > > > > CF > > > > > last > > > > > > week. She has suffered from a prolapsed rectum for over two > years > > > > > and has > > > > > > had problems with her digestive system since birth. My 16 month > old > > > > > has > > > > > not > > > > > > been tested yet, but I doubt she will test positive. We were > > > > > relieved to > > > > > > finally have an answer as to what was wrong with Makenzie, but > we > > > > > were > > > > > > devastated to find out it was CF. My brain feels like mush from > all > > > > > the > > > > > > information I have been absorbing. I hope to learn a lot > through > > > > > all of > > > > > > you. I have a lot of questions that I am sure some of you can > help > > > > > me > > > > > > with. I won't dump them all on you at once. I know that my > doctor > > > > > said > > > > > > they are so close to a cure, but how close is close? And, what > is > > > > > the > > > > > > average age these days that people with CF are living to? I > hope > to > > > > > hear > > > > > > from you all soon. Thanks. > > > > > > > > > > > > Sheila Goff > > > > > > > > > > > > > > > > > > > > > > > > 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 August 2, 2001 Report Share Posted August 2, 2001 HI and welcome to the list. with our other kids, we have always talked about CF (which the older kids call CF and the younger kids either call CF or 65 roses). I think it is best to be pretty open about it, matter of fact kind of open (but without gorey details of prognosis etc at this age, just the facts....she takes enzymes b/c she has CF, she takes nebs b/c she has CF, etc) As far as other family members go, perhaps you could get some literature from Grandmom Bev or from your clinic and ask them to read it. Also, for your kids, there are some really good kids books (Mallory's 65 roses is my kids favorite) which your clinic, or maybe Grandmom Bev can get for you. there are also videos for kids, and for adult family members. Where do you live? We are in knoxville, TN but are currently vacationing in Kingston Ontario (well, near there, anyway.) Take care and welcome Jen Mommy of 7, including ph 2 with CF, Mallory 3 with CF, RAD, GERD, OSA, port-a-cath; 5 with CF, port-a-cath; 7, Miranda 9, Mollie 8 with Type 1 diabetes (juvenile diabetes) ; Madison 5 yo ; also aunt to 4 yo with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2001 Report Share Posted August 2, 2001 I live in Portland Or. I would love any info on talking to friends/relatives about cf most don't understand we just got the results in yesterday 8/1 and when we told them they reacted like we had told them she had the flu or something. She has had a lot of resperatory infections, ear infections (she's got tubes in her ears because she constantly had fluid in them), she's had problems tolerating certain foods, and more recently she starting having rectal prolapse which is when the drs. decided she should probably be tested for cf we were both surprised when they suggested that because it has never been in either of our families. We were even more surprised when the test came back that she had it, but we have always in the back of our minds thought there was something wrong, I'm not really sure why. Anyway my inlaws don't really think it is anything big and can't understand why we are so worried about it. They don't seem to understand that it isn't fixed by having some kind of surgery or medication to get rid of it completely. My parents understand though they have been around thing like this before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2001 Report Share Posted August 2, 2001 Hi and welcome! I'd say you've found the people who have gone through it before! I'm sorry that you have a reason to be here, but at least you aren't alone. To explain it to the relatives, you could just say that because she has cystic fibrosis, (a recessive genetic disease,) she has to have a good deal of preventive care to stay well. Just tell them that with frequent check-ups and monitoring, any infection can be caught early and treated. To explain to the kids, just let them know that some people have to go to the doctor more often than others, just as some people have to go to the dentist more often than others, or to the eye doctor, etc. (whatever they are familiar with.) Let them know that cystic fibrosis is something that she was born with, even though you didn't know about it when she was born, and it can't be " caught " from someone. I wouldn't dwell on the negative outlook of the disease, especially since the life expectancy is now approaching the mid thirties and climbing each year (why cast a shadow of gloom over the children when there may be no reason to fret?) If, when asked about cf, you choke up (I know I wasn't very eloquent in discussing it when the diagnosis was new!), you might make up little fact cards on your computer about cf and print them out. You could list several cystic fibrosis facts on them even if they were business card size. Then when someone asks, you could just hand them the card and say, " here is some information about it. " That might save you the emotional turmoil of repeating AGAIN what it is and what it does to people. (Actually, I think I will do this, too!) You will probably want to hand the in-laws some literature, too. The book " Cystic Fibrosis A Guide for Patient and Family " by M. Orenstein has been an invaluable resource for me. You might be able to get a copy free of charge from your clinic. Once you've read it, you could lend it to relatives who want more information. It will get easier as time goes on, and things will look brighter for your child and your situation. Thanks for writing an introduction! ~ mommy of 3, 1 wcf > I'm new to the list and wanted to say hi to everybody. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Hi, Don't worry my son was dx w cf 6 months ago,he's 2. My parents and in-law also thinks is nothing. Just medication/surgery will fix him. You see my son almost died this past Dec.and no family members saw him,we live in La. and they live in Puerto Rico so they had no clue want was going on in our household so they think we are exaggerating . I was even told by my mother that it was maybe something bad me and my husband did.No one in the family has it. But I know for a fact that my mom had a 2 year old brother who died from digestive problems at the time ,they said it was a virus,this happen around the 1940's in P.R.,So we concluded that our son need us only and no one else.He is now thank God healthy compare how we almost lost me to this w/o no clue he had. Good Luck Debbie mom of 3 ( 2 w/cf, 9 wo/cf and Sharon 16 wo/cf) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Hi Terri, welcome to the list! I would like to suggest to take your time with your inlaws and everything. The dx is so shocking for everyone, it will last a while until they all understand. And everybody has a different manner with how to handle such a news. Many people simply don't have an idea how to react to such a news and then think by saying " it will get better " they can't do nothing wrong. There is another great mom from Portland on this list, Robin Thoreson, who has three kids with CF. I am not sure whether she is reading this, her addy is RThor17725@... Bye Torsten, dad of Fiona 4wcf > I live in Portland Or. I would love any info on talking to > friends/relatives about cf most don't understand we just got the > results in yesterday 8/1 and when we told them they reacted like we > had told them she had the flu or something. She has had a lot of > resperatory infections, ear infections (she's got tubes in her ears > because she constantly had fluid in them), she's had problems > tolerating certain foods, and more recently she starting having rectal > prolapse which is when the drs. decided she should probably be tested > for cf we were both surprised when they suggested that because it has > never been in either of our families. We were even more surprised when > the test came back that she had it, but we have always in the back of > our minds thought there was something wrong, I'm not really sure why. > Anyway my inlaws don't really think it is anything big and can't > understand why we are so worried about it. They don't seem to > understand that it isn't fixed by having some kind of surgery or > medication to get rid of it completely. My parents understand though > they have been around thing like this before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Hi, Welcome, I hope McKenzie is feeling better. Two is a pretty crummy age to be going through that stuff. If your relatives are on-line maybe directing them to one of the info websites about CF would be helpful. The one for the Canadian CF Foundation (www.ccff.ca) is pretty good and has some useful links. We're pretty new to this whole CF thing ourselves, and without a for-sure dx but I know that it can be hard enough for parents to grasp the situation and get up to speed on the disease, let alone other relatives who only see an externally " healthy " child. All the best, Jane, mom of (10),Tony (9), (6), Meredith(4),all wocf; Eleanora (22 mos) ?cf and one on the way. bsharvey@... wrote: > I'm new to the list and wanted to say hi to everybody. I am a mother > of 4 kids to boys ages 6 and 4 and 2 girls ages 2 and 7 mos. Our 2 yr > old McKenzie was just recently diagnosed with cf and I'm just looking > for people out there who have gone through this before. I don't really > know how to explain what she has to some relatives who don't > understand what it is since she doesn't seem to be sick to them and to > the other kids in the family why she has to go to the dr. alot lately. > > > 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 August 3, 2001 Report Share Posted August 3, 2001 Do you have a computer? If you do there is free software that is kid level that explains the importance of sticking to your daily cf regimin. While I know it is your two year old that has cf, it has good cartoon graphics and it can help explain to your older ones exactly what is going on. The web addy to sign up for this software is www.starbright.org . And did I mention that it is FREE!!!! :-) Dawn mom of 5, 4, Sammye 3, and Pattimae 8 months wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Hi and welcome. I'm pretty new to all of this too, my 1 year old was diagnosed a few weeks ago. We just told that he has an illness called cystic fibrosis and needs to take enzymes to help him digest his food so he can grow. And that because of CF, his lungs need some extra help to stay healthy, so we are doing nebs and PT. She needs lots of reassurance that she does not need enzymes or PT, so we explained that this is something that only has, he has had it since he was born, and you can't catch it. , by the way, is nearly three years old. I think you can give them as much info as they can handle for their age...and definitely leave out any scary, long-term stuff for the moment. I think when it does come time to talk w/Jake about the longer-term stuff, that will be years from now, when he becomes aware of it more, and we will talk about how yes, some people have a hard time with CF and get very sick, others do very, very well...and how there are new things being developed to keep him healthy...very matter-of-fact, reassuring but realistic. (Of course I hope like hell by the time we have to have this talks there is a CURE.) (I should also mention we're pretty sure Kate is CF-free because Jake is homozygous for df508, so Kate probably would have had pancreatic or digestive issues by now, and she has none. We're keeping our fingers crossed. She's off the chart big for height and weight....we'll know in mid-Sept whether she has it, is a carrier, or is free of the damned mutation.) * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * ~ * mama to and Walter is nearly three ?CF and is nearly 1 w/CF http://www.dancing-bears.com Now open ~ featuring Bubble Babies " Re-examine all you have been told... dismiss what insults your soul. " --Walt Whitman Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 I LIVE IN THE STATE OF LOUISIANA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Jen, Eilish loves that Mallory 65 roses book, I bet your Mallory thinks it's about her. EIlish actually likes to watch a cf video we got at dx. It explains masks,enzymes, in a day to day manner and how important they are. Then you see little kids talking about it. I think Eilish likes to see other people like herself and she doesn't know anyone except post transplant cfers. She likes to watch it when she's having her mask. But truthfully I've had enough of watching it. Re: new to list > HI and welcome to the list. with our other kids, we have always talked about > CF (which the older kids call CF and the younger kids either call CF or 65 > roses). I think it is best to be pretty open about it, matter of fact kind > of open (but without gorey details of prognosis etc at this age, just the > facts....she takes enzymes b/c she has CF, she takes nebs b/c she has CF, > etc) As far as other family members go, perhaps you could get some > literature from Grandmom Bev or from your clinic and ask them to read it. > Also, for your kids, there are some really good kids books (Mallory's 65 > roses is my kids favorite) which your clinic, or maybe Grandmom Bev can get > for you. there are also videos for kids, and for adult family members. > Where do you live? We are in knoxville, TN but are currently vacationing in > Kingston Ontario (well, near there, anyway.) > Take care and welcome > Jen > > Mommy of 7, including ph 2 with CF, Mallory 3 with CF, RAD, GERD, OSA, > port-a-cath; 5 with CF, port-a-cath; 7, Miranda 9, Mollie 8 > with Type 1 diabetes (juvenile diabetes) ; Madison 5 yo ; also aunt to > 4 yo with CF > > > > 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 August 3, 2001 Report Share Posted August 3, 2001 It can seem so unfair that at a time in your life when you need people in your life-the most to be helpful, especially family, that they may not know what to say, or even worse, say something hurtful or insensitive. So on top of having to cope with your own new and raw emotions you are also having to support and educate friends and family. Try not too judge them to harshly, there is probably nothing anyone could say or do right now that would really take the pain a way. Someday you will have more tolerance over the dumb things people say, but then again ... you will always have one of those days, when you are in the grocery store, and your child coughs, and some sweet elderly lady tsskss that they should not be out in public with that cold. You may feel like hitting her over the head with a loaf of bread. But this won't be an everyday feeling! Hang in there -- (Mom to Amber with CF age17yrs.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 I would like to get the book for Mallory's 65 roses. I didn't know there was a book out there for kids. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 I know how you feel my in laws who smoke didn't think it was a big deal either. I thought we were going to have a major fight and it was going to be with me. Because at the time my husband smoked to but he doesn't anymore. But he would say oh it is there house they can smoke in it if they want to and I would say find then our kids can't be over there anymore. That was on Christmas they were not over there until it started to get nice outside and they could visit them outside but after that summer my father in law got sick and had to stop smoking and so did his wife so we had a blessing in disci's. Well, they still think we over react with there illness but I don't think they realize how is can kill them. They are so worried about there own health anymore I don't even try anymore. My parents try to understand and we found CF on my side of the family but we have never found it on my husbands side yet. It was also a shock to us because we never knew it was on either of our sides either. I think what bothers me the most is that my siblings on both sides of the family won't get there kids tested. They feel like since they don't know about any CF on there husband's side that it won't happen to them. But just this week on of my sister was telling me that her son who is going to be 3 next month just had a check up and he is in the 25% for weight and I just grenched. But I didn't say anything because I know she is going to say well he was a preemie and that is why he is behind on his weight but this kids has a runny nose all of the time. OK this letter got longer then I had expected so I will say bye for now. Oh I live in Iowa and have two with CF on is 9 and my other is 4 and I also have one that is 7 without CF. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 DEB, Please send me your address & i will send the book to you. I leave for CA tues. 6 am so get it to me tonight/tomorrow ,otherwise I will send it next week when I return. LOVE, GrandmomBEV Re: new to list I would like to get the book for Mallory's 65 roses. I didn't know there was a book out there for kids. Deb 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 August 5, 2001 Report Share Posted August 5, 2001 Deb, I also have a 7 year old wocf and Eilish who is four 16th August wcf. Re: re: new to list > I know how you feel my in laws who smoke didn't think it was a big deal > either. I thought we were going to have a major fight and it was going to be > with me. Because at the time my husband smoked to but he doesn't anymore. But > he would say oh it is there house they can smoke in it if they want to and I > would say find then our kids can't be over there anymore. That was on > Christmas they were not over there until it started to get nice outside and > they could visit them outside but after that summer my father in law got sick > and had to stop smoking and so did his wife so we had a blessing in disci's. > Well, they still think we over react with there illness but I don't think > they realize how is can kill them. They are so worried about there own health > anymore I don't even try anymore. My parents try to understand and we found > CF on my side of the family but we have never found it on my husbands side > yet. It was also a shock to us because we never knew it was on either of our > sides either. I think what bothers me the most is that my siblings on both > sides of the family won't get there kids tested. They feel like since they > don't know about any CF on there husband's side that it won't happen to them. > But just this week on of my sister was telling me that her son who is going > to be 3 next month just had a check up and he is in the 25% for weight and I > just grenched. But I didn't say anything because I know she is going to say > well he was a preemie and that is why he is behind on his weight but this > kids has a runny nose all of the time. OK this letter got longer then I had > expected so I will say bye for now. Oh I live in Iowa and have two with CF on > is 9 and my other is 4 and I also have one that is 7 without CF. Deb > > > > 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...
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