Guest guest Posted May 23, 2000 Report Share Posted May 23, 2000 Hi my name is Katy and I was here a while ago ( hi JEN) but I had to pull out for a while because hmmmmm OK I " ll be honest YOU GUYS TALK ALOT hehehehe.. Kidding of course. things have settled somewhat here and going great. I have 3 kids grace who is 9 (Asthma, ADD and fighting depression) Micah 4(CF,ASD Repair, anther heart mumer, ADHD,RAD, GERD,Savere hearing loss, developmental delay and Speech delay,) and then there's Elijah who will be 2 in June weighing in Yesterday at a whooping 19.5 pounds( CF,Epalipsy, develpmental delay, speech delay,GERD,RAD) I think when I was here last my little Elijah still had the Central line with the feeding tube. Well the Central line is out but feeding tube still there. We were in hopes of getting it removed this month but the weight check yesterday turned everything around. They had taken him off pump feedings at night to see how he would do well a month and a half ago he weighed in at 25 pounds so that big of weight loss looks like the Button stays. He does very good with it, dosn't mess with it much. beginning to wonder why he has that secound belly button but hasn't pulled it out. The good thing about Elijah is we have stayed out of the Hospital for 6 months now WHEEEWWW. He is finally progressing, started walking last month and is into everything now even on top of my table at times =). Micah is doing good also he is as hyper as all get out and the provental dosn't help at all. We are at a loss at what to do with the hyperactivity my husband dosn't want him on drugs for it because he is on so much now but he is so un barable at times. He played soccer this last season for the first time and did pretty good. He would play for 5-10 minutes and come running in saying I'm done and rest and when he was ready to go back out you better be ready because he was running out there to the field hehehe. He is now playing Tee ball which is alot easier for him to play. We went into the Heart Dr in Jan for his regular check up for the ASD repair and they found anther hole at this point we are letting it be to see what it is gonna do. Micah is on pulmazyme right now and that seems to be helping him so MUCH. I am happy at this point I haven't been in the hospital with them for 6 months and life is good for them hehe. grace on the other hand has her own issues with coping with Elijah and Micah and the Death of our son Josiah and few yrs back. She is seeing a psycologist here and seems to help some It is just hard to see her going through it like she is. well I think that is about it I am still here at Ft campbell for anther Yr at least. and we are seen at KOSIAR childrens in KY and we love it there. Can't wait to talk with everyone I am on digest so I don't get overwhelmed again =). Gotta go have a wonderful day Katy --- cfparentsegroups wrote: > ------------------------------------------------------------------------ > Failed tests, classes skipped, forgotten locker > combinations. > Remember the good 'ol days > http://click./1/4053/6/_/480698/_/959069063/ > ------------------------------------------------------------------------ > > *********************** > 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. > > -------------------------------------------------- > > > Our webpage is at > http://www.eohio.net/malbright/cfparents.htm > > _________________________________________________ > Post message: cfparentsonelist > Subscribe: cfparents-subscribeonelist > Unsubscribe: cfparents-unsubscribeonelist > List owner: cfparents-owneronelist > _________________________________________________ > > WE HAVE A CHAT PAGE!!! > http://www.onelist.com/chat/cfparents > _________________________________________________ > > > ------------------------------------------------------------------------ > > There are 20 messages in this issue. > > Topics in this digest: > > 1. RE: Hi! > From: " Ostheller " > > 2. Re: re Jon & , and Madison Great > Strides, condensation in ne... > From: jfkdc@... > 3. Re: Therapeutic Centers > From: QuiltnGal@... > 4. Lori, > From: aberdeen95@... > 5. RE: Hi! > From: " " > > 6. RE: buttons > From: " Ronda Charette " > > 7. Time for tune up for > > 8. RE: Hi! > > 9. RE: RE: [CYSTIC-L] Interesting report.... > > 10. Re: Time for tune up for > From: Herc28@... > 11. Re: [Time for tune up for ] > From: nkohl@... > > 12. Re: buttons > From: circa1992@... > 13. Where's WalMO? > From: Maureen MacIsaac > > 14. Re: buttons > From: Tanner0011@... > 15. JoJo update hello and misc replies > From: ron88jen@... > 16. Re: re Jon & , and Madison Great > Strides, condensation in ne... > From: jamesmndy@... > 17. Re: Where's WalMO? > From: ron88jen@... > 18. CF field day : contest for you all! > From: ron88jen@... > 19. Re: buttons > From: " shawn johnson " > > 20. Re: re Jon & , and Madison Great > Strides, condensation in ne... > From: " " > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 1 > Date: Mon, 22 May 2000 13:51:20 -0700 > > Subject: RE: Hi! > > I am also from Washington State. My family lives up > here in Bellingham. > , Emma & I had a fun go at the fundraising > events this year. We did > both the Lynden CF Bike-A-Thon and the Seattle Great > Strides. Fortunately > it didn't really start raining until after the walk > was over . > Emma is doing pretty good she's just now getting > over her worst cold to > date. Her little nose was so plugged she stopped > sucking her thumb > (temporarily anyway). > Ostheller father of Emma 2-3/4yo w/CF > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 2 > Date: Mon, 22 May 2000 17:02:34 EDT > From: jfkdc@... > Subject: Re: re Jon & , and Madison Great > Strides, condensation in ne... > > My mother had smoked for YEARS , always looking for > a reason to quit. Then, > 2 months after my son was born (and, of course, > after his diagnosis) she quit > -- it's 2 years ago from last week. The thing that > " got " her to quit was > that she didn't think we would let him (my son) stay > with her if she smoked > (even if we knew she wouldn't do it around him). I > think it was just the > proper incentive she had been looking for for years > -- and now, 2 years > later, she's still a non-smoker! I think everyone > does it in their own time. > > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 3 > Date: Mon, 22 May 2000 17:30:32 EDT > From: QuiltnGal@... > Subject: Re: Therapeutic Centers > > In a message dated 05/22/2000 1:22:30 PM Mountain > Daylight Time, > jfkdc@... writes: > > > My information from our CF clinic is that DHA has > not been approved for > > clinical trials on children, anyway. The > " toxicity " studies are beginning > > in > > September on Adults, but no kids yet. Does > anyone have information to the > > contrary? > > At Adam's last clinic visit on May 12th, Dr. Wagener > mentioned that Dr. > Accurso is pushing to have DHA trials that would > include kids ages 1-10. > They're hoping to see the effects that it may have > on kids with minimal lung > infections. Hope I understood him correctly. > > , Nate (3 1/2 wocf) and Adam's (1 wcf) mom > > > ________________________________________________________________________ > ________________________________________________________________________ > > Message: 4 > Date: Tue, 23 May 2000 00:22:54 +0200 > From: aberdeen95@... > Subject: Lori, > > Hi, > > Lori, are you treating the haemophilus influenza? > Fiona has cultured it too the > last time and we hope that after a course of Cefclor > it is gone now. At least > her coughing has decreased a lot. > > , Dr. Chevalier from De Haan, who has > " invented " the autogenic drainage > usually gives presentations on invitation. I have > heard, that he is a great > motivator to the kids, but the technique isn't easy > to learn and you have to > === message truncated === __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2000 Report Share Posted May 23, 2000 Katy, Welcome back!!! Good to see a post from you. Have you tried getting him to drink ensure plus or twocal or boost plus to add some weight on? If you have time, you might want to post your " story " as there are lots of new folks on the list these days. Didn't Josiah pass away from undiagnosed CF? Also, some of the parents who are having trouble with their current centers might be interested in your " lovely " story about that " oh so wonderful " hospital..... I hope your daughter finds a way to cope. That is such a hard age. I know that Miranda is one of those sensitive kiddos, too, and at times she has really had trouble with the CF stuff and she's so sensitive she still crys about her dog dying over a year ago, so I cannot imagine if she had to deal with a death of a sibling--UNIMAGINABLE!! Its so hard to know how to help a child cope, in my opinion....I can't even imagine coping as well as you do. You and your hubby always seem to cope very well. Take care and glad to see you back on the list. If its any consolation, there are fewer posts here than on cystic-l, hehehe. Jen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2000 Report Share Posted May 24, 2000 >If you have time, you might want to post your " story " as there are lots of >new folks on the list these days. Didn't Josiah pass away from undiagnosed >CF? Also, some of the parents who are having trouble with their current >centers might be interested in your " lovely " story about that " oh so >wonderful " hospital..... I would like to hear your stories! :-) mom to Abriana and Bradyn, both with cf ________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
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