Guest guest Posted September 21, 1999 Report Share Posted September 21, 1999 In a message dated 9/21/99 3:29:04 PM Central Daylight Time, macisaac@... writes: << Kathy the Reflux Princess (I think Jen still has the Queen title) Just a note, we put a brick under the two front legs of the crib rather than raising the mattress, due to the danger of little ones suffocating. Hope you are staying reasonably dry! >> Hey Mo! Princess! Ha! Staying dry! HaHa! Good tip, considering I am afraid of the suffocation thing too! Thanks! Hope all is well. Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 1999 Report Share Posted October 28, 1999 Mo, Hey there, I guess the problem with Kod isn't actually the line but the extension. It is such a small one and the clamp is just huge. So, I guess only doing dressing changes once a week and changing the extension once a week is not going to work. I may even have to change that extension every other day but hey if it saves the line, I'm all for that. Things are going well. Kodey is down to nearly no cough at all. I love it. I don't think I've said " cover your mouth " in a couple of days!!!!! It's the little things in life you knowl. ) I guess the final reports on the deep sputum was 3 seperate kind of Psuedo. I'm okay with that. It could be much more. I need to go and read stories and all that jazz. We have an off day tomorrow b/c we did decide not to send Kod to the Medical Care Facility. Have a good night ya'll!!! Love, Misc replies > > >Hi Jen, > >When we chatted and talked about Fred, it had crossed my mind that he >probably knew how to beat the drug testing, but did not want to be the >voice of negativity! What a guy - that's all I'll say cuz he pushes all my > " Bob " buttons, but tell I said, " Stay strong and when you're dealing >with someone like that, trust me, it's better on the single side of life. " >I can't believe I've been on my own for almost two years - guess I've >earned the right give advice on that topic. She's lucky to have you as a >friend (as are we all). > >How did it go with Mall? I'm sure you're stuck in that place of not >wanting her to go in for a tune up, but also thinking it may be of benefit >to her. I was also curious about the food allergy question - it seemed >bizarre to me that extra mucus would be the only symptom but after all, she >is your kid (Note to others: this fam does nothing by the textbook) Let us >know, how it went cuz I'll be thinking of you. > >, >I was glad to hear that M wasn't culturing anything new or nasty. >Sometimes I think these kids just do things like run unexplained fevers >just to keep us on our toes and keep us from getting complacent! Like >that's going to happen!! I hope she'll continue to improve like good wine >and cheese! > >, >Did you manage to sort out Kodey's line? > >Bren, >I emailed you privately, but hope that you'll stay with us - we really are >a well balanced supportive lot, not to mention humourous! > >All, >I would like to post some pictures but I know in the past some folks had >difficulty retrieving and/or downloading. Please let me know if or how >this could be done. > >I am happy to report that this cold has finally moved through my house, and >miracles abound, Allie was the one least affected! That leaves me >scratchin' my head but am pleased just to dodge the bullets. > >In love and laughter, but not dancing on that ankle yet, >Mo, mom of 4yo twins, and andra (wcf) and 2yo, Jordan > >>This is a secular 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. > >---------------------------------------- > >If you know someone who would find cfparents useful, have them follow this link: http://www.onelist.com/subscribe/cfparents > >---------------------------------------- > >Come chat at our webpage! http://members.tripod.com/cfparents/ > >---------------------------------------- > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2000 Report Share Posted January 23, 2000 In a message dated 1/22/00 9:58:01 AM Central Standard Time, macisaac@... writes: << Kathy B: I'm sending major hugs and good wishes your way. I'm sorry about your Grandpa. It's the most difficult thing in life to watch a loved one suffer. I am glad to hear that Felicia has been well. You are in my heart and prayers. >> Hi Mo, how are you? I have been so busy these past few months that I completely forgot about your book. Please email me privately and let me know when you need it and what exactly you need. THANKS! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2000 Report Share Posted February 12, 2000 Hello everyone, Gee, that includes , Mo, Daelynn, , Mandy, , Becky, both 's, both Kathy's, Torsten (our token list Daddy!) , Lori, and everyone else.... Lori, re: the Tobi it may sound crazy but we do that when they are asleep. The idea here is that they won't cough it back up, which you do not want them to do on the Tobi (whereas you do with the pulmozyme..) So what we do is do the reg. nebs while they are awake (and these at bedtime and naptime usually seem to induce sleep) and then after they are asleep for nap and at night we do the tobi.... also, both and Mallory use the pari baby masks, they seem to like the control of holding it themselves, and both have been good about it since they were very little.... Mo, keep connecting those dots and give that little chia covered kid a big hug from Miranda, and Miranda wanted me to tell Ali not to scratch... Everyone else: thanks again for all the helpful advice, etc.... Mallory's sats were back down to 82 and 84 later in the night with the chest caving in thing and then she even got uncooperative about the o2 mask as the night wore on. BUT this morning for several hours, you'd have sworn she wasn't sick at all (except for audible wheezing, but her activity level was terrific) then at naptime (now) she is doing the chest caving in thing again, Heck, I don't know what to think. Oh and Jo Jo is wheezing today. Take care everyone, Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 ron88jen@... wrote: << Torsten, wow, she weighs 33 lbs!! Thats 2 lbs more than (he turned 4 in January) I thought she was a picky eater? can gobble 2 pbj's at one sitting or as many as 4 hotdogs, the kid can eat...what can I say! Iam so glad that Fiona is weighing in so well. >> Well, I only can say " yeah, for Nestle and Humana " . It's a miracle to me, that she strives so well on formula and pulp, but she does. And no problem to keep this kid without food throughout the day, what comes handy from time to time. Thanks for the compliments about my english. You all are great teachers to me. And it might even get better, now that the english version of " Teletubbies " runs in German TV once a week LOL You might remember that I wrote about Fiona's " growing pains " . Her complains became so strong recently, even at night, that we went to an orthopedist and an radiologist for x-rays. But none of them could find a sign for periostitis or an abscess. So it's either mental or just weird. We have some problems with Fiona's tantrums at the moment, that's why we think it could be mental. She is a happy child for most of the day, but when she starts feeling cranky, it's just unstoppable, she complains about each and everything, yells and even kicks and beats at us. Sending her into her room for a time-out doesn't help nor does yelling back (of course LOL). Any ideas from our experienced parents? , I just read an article about lung-bleedings in our CF-magazine and the doc suggest to stop blood-thinning drugs like aspirin, ibuprofen or penicillin and to check the vitamin K level. Inhalative drugs like tobra might be the culprit too, but you can't stop them easily. Hope gets better soon. Bye-bye Torsten, dad of Fiona 3wcf and part-time monsterness Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2000 Report Share Posted March 27, 2000 Torsten, What type of growing pains is Fiona having? Growing up I had terrible leg cramps, usually behing my knees and sometimes in my calfs, they usually came on at night time (from age 4 until 16). My middle son also had these starting at 2 and every now and then, and my husband still gets them. Are these the kind or are you talking behavior type growing pains... wanting more independence and all? Just curious. Good Luck, Daelynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 Meg, You should probably not offer to adopt me these days - it may not take much to get me to run away from home these days! Besides, I think it was a rather innocent comment like that one which preceeded my meeting with Jen - and that`s been no end of grief LOL! Brens, My malabsorbtion problems seem to extend only to healthy things - I acheive success with such things as Sangria, Red wine, chocolate, caffeine, and anything containing fat molecules! I`ve also been maladaptive since birth :-) and proud of it! Jen, Poor Ron - he has soooo much on his mind - the responsibility for all those kids - and then, having to put up with you too! Since he is in line for Sainthood, I think that you should just buy him a Hummer! Maybe one in red so that others won`t take him on. I also have salt problems, but not on the lashes (which is bizarre btw) I seem to accumulate salt around my lips - hmmmm, but perhaps that`s more related to salt-rimmed Margueritas! Love ya, Pal, thanks for taking the time to share all your trials, tribulations, and joys. You are one amazing chick! I spoke too soon about the good health - the kids all have colds again, although, so far Allie has managed to avoid the cough (go figure that) Hugs to all, Mo, live from the snot factory. Sign up now for your free web based email account http://ebarua.mondenet.com/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2000 Report Share Posted April 4, 2000 Mo....or anyone.....is it too late to send our story to Mo? I am not sure if she has what she needs! Can anyone let me know?! Thanks! Kathy Mom to Felicia Quote Link to comment Share on other sites More sharing options...
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