Guest guest Report post Posted October 10, 1999 I would like much to get off this list my e-mail is so loaded and strange things are coming on my system i REALLY DON'T WONT TO DO THIS thank you for deleting me BYE-------------Sharon---------------- Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 10, 1999 In a message dated 10/10/1999 12:33:37 PM Pacific Daylight Time, SJGRANDMA1@... writes: << I would like much to get off this list my e-mail is so loaded and strange things are coming on my system i REALLY DON'T WONT TO DO THIS thank you for deleting me BYE-------------Sharon---------------- >> Angie and I deleted Sharon. Roy Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 11, 1999 In a message dated 10/11/99 12:04:11 AM Central Daylight Time, AngieCATW1@... writes: << She did have an attitude didn't she? I wonder if she had RP at all >> probably but she had something else also??????? lol Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 11, 1999 In a message dated 10/11/99 12:55:22 AM Central Daylight Time, Evnarz@... writes: << ittle ones 4,8,12 >> HI , I can't imagine having to raise little ones and be sick, I admire your strength and everyone else who has small children. When I am in pain, I don't know if I could cope with small ones, because the pain is so bad. Yes I do take something for pain, only when I have too which is pretty often. My fingers are getting where they hurt so bad its hard to type....Hang in here , we are here for you. Love, Lu Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 11, 1999 In a message dated 10/11/99 6:39:25 PM Central Daylight Time, RTI2264@... writes: << Lu You just missed being genuinely pisssssst right to hell off. >> LOL Rene...I'm confused????? LOL Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 11, 1999 In a message dated 10/11/99 7:28:14 PM Central Daylight Time, RTI2264@... writes: << but it is a lot for your children to digest. >> your absolutely right Rene, My kids are grown but it has been hard on them, harder than I realized. It hurts them to have to see you in pain and scared that you are going to not make it and all the ifs with this weird illness. Lu Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 11, 1999 In a message dated 10/11/99 11:10:28 PM Central Daylight Time, Evnarz@... writes: << I love following you on this lu - you keep me laughing!!!!! - love lisa >> well you made me laugh tonight from your perch LOL I loved it! Hang it there , we are here for you if you need us! hehe Don't everyone just love that I speak for them??????????? Love u Lu Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 11, 1999 In a message dated 10/11/99 11:28:42 PM Central Daylight Time, Rlr1999@... writes: << isa, you are falling in with a bad crowd here. You should watch out for Lu and also The one called woods. They will always try to cheer you up and make you feel better. but they are mean to me. Treat me like a little brother, ummm you both are older than I am arent you. and Lu, Just so you know. I wrote something and I actually thought it wasnt wise to send it. So I deleted it. I must be getting soft, or else my butt is in mortal fear. >> roflmao......Brave one aren't we? are you older than Roy? LOL Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 12, 1999 In a message dated 10/12/99 7:15:06 PM Central Daylight Time, susuw@... writes: << Everyone on this group is great!!! Everyone!!!!!!!! >> I think so too...you are my lifesaviors : ) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 12, 1999 I lost 5 pregnancies die to the RP and managed by the luck of God, prayers and a miracle to hold on to the one I have. we were both fighters. For the newbies. my son is a miracle. he almost died twice in utero but he hung on Love and Gentle Hugs, Angie http://www.onelist.com/subscribe/SantaLetters http://www.geocities.com/acenneno_1999 http://hometown.aol.com/RLR1999/HomeRP.html http://members.tripod.com/~autoimmune Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 12, 1999 Hey girls, what are the dates in Dec.???? Jo ----Original Message----- To: Rpolychondritisonelist <Rpolychondritisonelist> Date: Tuesday, October 12, 1999 11:50 AM Subject: Re: >From: Lu1953@... > >In a message dated 10/12/99 5:45:59 AM Central Daylight Time, >susuw@... writes: > ><< My profile lists me one year older than I am because they only go by year, > not month. My birthday is in Dec. so I am getting cheated out of a whole > year here. >> >hey me too... my birthday is in Dec also.... > >>hi and welcome. maybe we can come up with answers that our doctors can't > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted October 21, 1999 Hi, Marla! No one's laughing! " Bone-Age " sounds ridiculous; how could the bones be a different age than the child? But, they can--be growing at a different pace than the chronological age of the child. For example: an infant's bones are very soft, like cartilage. As the child grows in chron. age, the bones " harden " . When the bone-age is different from the chron age, they are not at the " average " stage of hardness as most children at that particular chron age. Bone-age delay is a characteristic of RSS--i.e., at 22 mo's (real age), my son's bone-age was 6-9 mo's. How do they tell? They refer to a book that has many examples of children's hands (the hand is used, by the way, for this test), and basically " match-up " by comparing and choosing the closest match to what is " normal " for that chron. age. When the child is very small for his/her age, it's actually good news that the bone-age is delayed and at about the same size of the child. This meant for us, the dr's explained, that there's probably no other medical condition to blame, like kidney or liver disease, etc. But, don't take that as worry for you-if your dr's said your child's bone-age is normal-it doesn't mean that there is a separate medical condition to blame, either. I believe, that bone-age delay is not a hard (no pun intended) and fast charac. of RSS-like many of the other charac's are/aren't either. That's our experience with bone-age delay and explanations from a variety of doctors. Hope this helps. Debbi, Jake's Mom, RSS, 37 " (grew an inch!), 27 lbs at 4 yrs., 8 mos. -- mmwood wrote: <HR> <!DOCTYPE HTML PUBLIC " -//W3C//DTD W3 HTML//EN " > <HTML> <HEAD> <META content=text/html;charset=iso-8859-1 http-equiv=Content-Type> <META content=' " MSHTML 4.72.3110.7 " ' name=GENERATOR> </HEAD> <BODY bgColor=#d8d0c8> <DIV><FONT color=#000000 face= " Arial Narrow " size=4>Hi everyone. & nbsp; I have a question that will probably make me sound like an idiot but oh well...</FONT></DIV> <DIV><FONT color=#000000 face= " Arial Narrow " size=4></FONT> & nbsp;</DIV> <DIV><FONT color=#000000 face= " Arial Narrow " size=4>Can someone explain to me what & quot;bone age & quot; means. & nbsp; They says Keagan's is normal but I don't have a clue what they're talking about. & nbsp; Thanks (and no laughing)----Marla</FONT></DIV></BODY></HTML> <HR> <html> > ===== Quote Share this post Link to post Share on other sites
Guest guest Report post Posted December 8, 1999 Hi I don't know about you but I don't like any food that a Y and a G in its name. I also won't drink anything blue. just kidding Ken M ---------- >From: .Mahtani@... >To: rss-supportonelist >Subject: >Date: Wed, Dec 8, 1999, 10:06 AM > > From: .Mahtani@... > > > > PAT, joghurt should have been spelled yoghurt, and over there it's probably > yogurt. I looked it up in the Oxford English Dictionary, and it said " a thick, > custard-like food, made from milk, with added bacteria and allowed to ferment " > !!! Doesn't sound like anyone would eat that!! > > > > > > > , > What is a joghurt? > Pat > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 2, 2000 Kathleen, I will be praying for you and Abby......at least she will be well taking care of at the hospital and hopefully you can rest you mind and body a little. Kisses to the little one, and Shelby ===== ~~~~~Life isn't a matter of milestones, But of moments.~~~ ~~~~ __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 2, 2000 Kathleen, So sorry you have to take Abby to the hospital. We will be praying for you. I hope after its all over with I hope you can some rest.Like everybody else on the list I wish I could be there to help. With all our Prayers Mark and family P.S. Although we know Abby will be fine we will still worry. Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2000 Kathleen, Why (again, sorry) you need to take Abby to a Pediatric Infectious Disease specialist? Can your primary refer you to a good one? I'm not in CA, just curious. Ya know, last night I included you and Abby in my prayers so that you would get an answer and so that Abby could get well! Good luck!! Debbi, Jake's mom __________________________________________________ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted January 25, 2000 Debbi, Thanks so much for the thoughts and prayers. I just made an appt with Peggy Weintrub in SF. We need to see a ped IDS to see if she can offer anything about why Abby's still sick. It might be a GI issue and we're seeing a new GI next week but it could also be something we've overlooked or a virus. She specializes in infectious diseases so knows a little more than a regular ped. Our ped suggested we see an IDS. I was originally going to see one here in town but I've been getting the run-around from their incompetent office for a week now and Abby is still sick. So, rather than end up on the roof with a machine gun, I just made an appt with someone in SF. It was so easy-wish I'd done it to begin with. Hopefully, we'll get a simple, easy to cure, answer. I'll keep you all posted. Kathleen (Mom to Abby--15 mos, 12 lbs. 12 oz, 25 in., not officially diagnosed RSS yet) Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 8, 2000 Kathleen, I looked at the vial of stuff I have left over for Max. The medication is called Anucort-HC. It is a 25mg (?) suppository. As I said, it worked well for Max. I am looking forward to seeing you on the 19th. Any ideas of where you would like to go? Jodi Re: (no subject) > > > > > > > >Kathleen, > >When do you fly out for your visit with Dr. H.? I thought it was this week, > but > >seeing you write emails makes me wonder if it is next week.. > > > >Katy > >(Mom to , 27 pounds, 35.5 " , Zantac, Periactin, GHT (soon), 3 years > old). > > > >--------------------------- Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 14, 2000 Thanks Pat - I know I'm just worrying for nothing - These kids (I should say all kids) handle things much better than we do. thanks again for the support Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 14, 2000 I could not have said it better. Jodi > > > Reality is you sit in the hallway for hours at Dr.H's. Oh and yes you find > out you have the same appt. as the people next to you. There is a pretty > good cafeteria at the hospital, but send someone down to bring it back or > chances are they'll call your name while you're gone. We make a 6hr. drive > one way to see her every 3 months. We have always been early and she has > always been at least 2 hrs behind, but when you do get to see her, she does > give you her attention. > > > --------------------------- Quote Share this post Link to post Share on other sites
Guest guest Report post Posted February 23, 2000 Kathleen, Abby is so lucky to have a mother like you. You are terrific! Jodi Hi all, I just got a very nice e-mail from Dr. H encouraging me to stay involved w/ you all and Magic so I think I will (if you all don't mind). She said I won't find a better source of info than Magic and that she is close with many things to RSS. Also, she's sending a letter to the Dr in Utah to introduce us and is calling our ped to talk about her illness. I am so impressed with how involved she has gotten and how willing she is to go to bat for us with all of this. BTW, she didn't think Abby needed a g-tube or that we needed to worry about hypoglycemia which is good. I should clarify that her size issues and her recent illness are separate. Dr. H is just trying to help with this recent illness in any way she can and I am deeply grateful. We're going to test for the HPV virus next by doing a biopsy on her rectal skin tags and also check her T-cells. I still haven't read through all of the e-mails but I will try to get through them this week. I apologize if anyone has addressed me and I haven't responded. Glad to be home! Kathleen (Mom to Abby--15 mos, 12 lbs. 10 oz, 26 1/4 in.- NOT RSS) -------------------------------------------------------------------------- -------------------------------------------------------------------------- ---------------------------------------------------------------------------- ---------------------------------------------------------------------------- ------------------------------------------------------------------------------ ------------------------------------------------------------------------------ Quote Share this post Link to post Share on other sites
Guest guest Report post Posted March 3, 2000 Your pics are out there! I put " Trey-'s Grandson " for the folder name. Is that okay? Kathleen [Mom to Abby--16 mos, 13 lbs., 26 1/4 in.- Close but not RSS ] >>Date: Thu, 2 Mar 2000 12:31:34 -0800 >> >>, >>Got your pics in the mail. I can't decide which ones to post! They're all >>cute! You didn't write on the back of the wallets how old he was in >>them-let me know & I'll include that in the name of the file when I post >>them. Should I post them all and if the files get too big, we can >>delete some? >>Kathleen [Mom to Abby--16 mos, 13 lbs., 26 1/4 in.- Close but not RSS ] > >______________________________________________________ >Get Your Private, Free Email at http://www.hotmail.com > > >------------------------------------------------------------------------ >GET A NEXTCARD VISA, in 30 seconds! Get rates >as low as 0.0% Intro APR and no hidden fees. >Apply NOW! >http://click./1/975/0/_/229381/_/952087679/ >------------------------------------------------------------------------ > > > Quote Share this post Link to post Share on other sites
Guest guest Report post Posted November 7, 2000 In a message dated 11/06/2000 6:14:37 PM Eastern Standard Time, schaub.julie@... writes: << it will come off easy unless you are living on hershey bars. >> oops.........(putting away my candy....) well i think my baby is still only less than a pound. im only 20 wks now and they are still small then, but its all gained in the baby area. thanks Quote Share this post Link to post Share on other sites
