Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 Kristy, Grandma Bev sent the book for us. And its lovely. Also our association has cf books for children. They Eilish was dx (3weeks) Rose (who used to work there) gave Liam 3 books about cf. Ones about lungs and cf stuff like physio,enzymes. The other is about a little girl who has cf and wants to go camping but isn't well and the hsp. tune her up and then she goes. The other is about what they do at the dr's. Re: new to list > , > What video was that??? We had one with families etc talking about cf and answers to common questions but that was one of the ones Matt has been on my back to return! > Where did you get your Mallory's 65 Roses book? > Kristy > > > > > 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 Grandmom Bev, I am also after the book (Mallory's 65 Roses) but dont know if it's available in Australia? If not I would love a copy! My addy is: Kristy Livock; 3 St,; Prospect; South Australia 5082 Thank you SO much Kristy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 WHOEVER this is to, by all means write me & I would be glad to send some info to you. .I am only going to be in office part of Monday so, write now. with your mailing address. I will be back into office / & home next Monday a week. I am going to CA, for the conf. Sure wish I could get to meet some of you all .I have Tuesday & Wednesday that I will be going fro SF down to San . By Thursday. My friend and partner in crime:):)-kidding , LOIS, will not be going with me as planned .I hope We can change her airline tickets for next trip..:) take care, LOVE & HUGS, grandmomBEV 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 5, 2001 Report Share Posted August 5, 2001 If there is another on shelf when I get in , YOUR WISH WILL BE MY COMMAND---:) hope all is well way over thar:):) LOVE & HUGS, grandmomBEV Re: new to list Grandmom Bev, I am also after the book (Mallory's 65 Roses) but dont know if it's available in Australia? If not I would love a copy! My addy is: Kristy Livock; 3 St,; Prospect; South Australia 5082 Thank you SO much Kristy 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 Grandma Bev, My address is Debbie Attig Utah Ave. SE. Lone Tree, IA 52755 and Thanks I think will love to read it. Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 , Does your 7 year old have some jealousy issues? Mine was just having one yesterday. Our oldest that has CF just had polyps removed and was in the hospital not overnight but just there for the day and my 7 year old says to me you pay more attention to then you do me it's not fair. You never pay any attention to me. I said to her do you want to go in the hospital and have that kind of attention. She said know but I feel like she acts out sometimes because she wants attention but its also hard when you have two with CF and trying to even out all of your time. If you have any advice to help please give me some. Thanks Deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 5, 2001 Report Share Posted August 5, 2001 thanks , got it!!:) LOVE, GRANDMOMBEV Re: new to list Grandma Bev, My address is Debbie Attig Utah Ave. SE. Lone Tree, IA 52755 and Thanks I think will love to read it. 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 March 10, 2002 Report Share Posted March 10, 2002 Hello, I use to be on this list awhile back. And then I lost touch over the past couple of years. I will tell you about myself and my 2 children that have RSS over time. I have a daughter who is 16 now and is 4 ft 7 and 3/4 in. You have to get in the that 3/4 of an inch. My other RSS child is my son who is now 13 years old and is 4 ft 2 and 3/4 in tall. He has not stopped growing yet, she has not grown in over 3 years. My daughter went through an early puberty so her growing stopped sooner. I hope to get to talk to you all more on here. And learn things from you. I did try to use GH on my son 2 times with failure so we are now happy with him being over 4ft in height the doctors told us he never would make it to 4ft. We no longer se any doctors as there was no way I would stop my sons puberty as he states he is fine the way he is and he does not want to stop it. I am not against Gh or the use of drugs to stop puberty it was just not right for us. So I hope you do not see that as a bad thing only that it was not the right thing fro our children. We have had a lot of disapointments along the way as I am sure you all have had at one time or another. To cut this short I will go for now and try to get on when the chat is scheduled. I look forward to talking with you all and my daughter would love to talk with other RSS children. Quote Link to comment Share on other sites More sharing options...
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