tag:blogger.com,1999:blog-9033292644886983637.post3377707619338970374..comments2023-07-05T10:49:21.125-05:00Comments on Life, Love, and 65 Roses: what's really going on?Julihttp://www.blogger.com/profile/10987693686104845515noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-9033292644886983637.post-3484845778411926362010-10-21T12:27:55.925-05:002010-10-21T12:27:55.925-05:00I just want to be doing everything I can, and I ju...I just want to be doing everything I can, and I just dont feel like I am. They say they dont start HTS until they are 6. I had to ask to increase her pulmozyme to q day instead of qo day, Ive increased her vest treatment times to 30 minutes on my own because it takes at least 30 minutes to evoke a cough and actually loosen anything.....you dont sound preachy, its good advice, and a swift kick in the rear right when i need it, as always ;)Cant wait for the house. no carpet. its going to have the best air filters and a filter just for her at her bedside.....i have big plans and you're right, it will help, a lot..... :)love to you from LA, the home of ridiculous disasters :) ~jAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-9033292644886983637.post-84144391141982216482010-10-21T00:44:07.040-05:002010-10-21T00:44:07.040-05:00I agree with you about the dangers of doctor hoppi...I agree with you about the dangers of doctor hopping. You have to be careful. However, getting a second opinion is crucial to success with this disease. When I tested Cayston, I had to go to a children's hospital. There were five or six doctors there and each had a different opinion about treating this disease. And according to the team at my clinic, some were not doing everything the science and research showed would help children. Information is power. Another resource for you is cysticfibrosis.com. Start asking other parents what the protocol is for their clinics. You don't even have to buy a plane ticket or drive to find out. :-) Sorry if I sound preachy. I care a great deal about you and your girls and wish nothing but the best for all of you. Especially you, crabby cancer. :-) You need some some more of that life with jack handy show. However, you're entitled. You have your hands full being a mom. Sounds like the house is really nice and will work out. That will help when that's all finished. <br /><br />Best to you. Good vibes from CA, the state that is broke.Anonymousnoreply@blogger.com