Guest guest Posted August 12, 2002 Report Share Posted August 12, 2002 Hi Ellie, I'm glad to hear Rileys labs were good! I hope her spine being curved isn't anything serious. Give Princess Riley a big Birthday hug from me & Princess Chey. Love & Hugs, & Chey4 Poly > Hi everyone, I just wanted to let you all know that I got Riley's labs back > from her pediatrician to take to the rheumy and everything looks good. The > bad news is that her spine is slightly curved and they want to take an x-ray. > I noticed it in the tub the other day and the ped confirmed it. Sorta sad > about that, but thank goodness the labs were okay. > xoxo, Ellie and Riley 5 tomorrow poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2002 Report Share Posted August 13, 2002 Ellie- Great news about Riley's labs, but not about her spine. Is it scoliosis? What are they going to do? She really doesn't need anything else wrong with her!! Hugs to you both. Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 Awesome news! How exciting for you and Riley. e, mom to Joe 15 poly skyley8@... wrote: Hi Everyone, I just wanted to check in and let you all know how Riley's appointments went. Her eyes are fine and her rheumy was astonished by how well she is doing. I of course got all teary eyed. Her sed rate has gone down from 51 to 19 and he says she has almost normal range of motion. She is to be fitted for a night brace at her next visit to make sure her leg stays straight. The Dynasplint did a perfect job and we will keep it for one more month while we wait for insurance to okay the brace. We are keeping her on the 15 mg of mtx. She even got through the blood test for the mtx study with minimal freak out! We had her back x-ray today and will soon get the results but her rheumy says it is reactive scoliosis (sp?) and nothing to worry about and it should straighten out on it's own. I don't have time to post more right now so to everyone I send big hugs. I'll probably get back on the list more regularly after school starts but I check in every few days to see how everyone is and you are all in my thoughts and prayers. xoxo, Ellie and Riley 5 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 22, 2002 Report Share Posted August 22, 2002 Ellie- What excellent news all the way around!!!! I'm thrilled the mtx has kicked in and Riley is feeling so much better. What a relief the scoliosis will work itself out. You must be ecstatic. Hugs.!! Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 23, 2002 Report Share Posted August 23, 2002 Ellie, That is great news about Riley. I'm so impressed with her sed rate,,Logan's is still 36, even though I see no swelling. He is doing good right now,also. It is almost as hard when they are doing good,as it is when they are doing bad,,for me at least. I just keep waiting ,,and waiting for him to start doing bad again. Then just when I start thinking remission,,BAM another flare. It is so hard not to get your hopes up. Anyway,,give Riley big hugs,,and have a great weekend. Kim and Logan 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Hi Elli, Even though I have been way to busy to keep up with all of the posts, I am glad to hear that Riley's appt went well - I was especially glad to hear that the spine should correct itself. What a relief that must have been - and I am sure that you will make sure they keep an eye on it! Hope all is well with you and everyone. Val Rob's Mom (4,systemic) In a message dated Wed, 21 Aug 2002 10:59:50 PM Eastern Standard Time, skyley8@... writes: > Hi Everyone, > I just wanted to check in and let you all know how Riley's appointments went. Her eyes are fine and her rheumy was astonished by how well she is doing. I of course got all teary eyed. Her sed rate has gone down from 51 to 19 and he says she has almost normal range of motion. She is to be fitted for a night brace at her next visit to make sure her leg stays straight. The Dynasplint did a perfect job and we will keep it for one more month while we wait for insurance to okay the brace. We are keeping her on the 15 mg of mtx. She even got through the blood test for the mtx study with minimal freak out! We had her back x-ray today and will soon get the results but her rheumy says it is reactive scoliosis (sp?) and nothing to worry about and it should straighten out on it's own. I don't have time to post more right now so to everyone I send big hugs. I'll probably get back on the list more regularly after school starts but I check in every few days to see how everyone is and you are all in my thoughts and prayers. > xoxo, Ellie and Riley 5 poly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 Hi Val, I know what you mean about being way to busy. Thank you for your thoughtful words. And as far as me making them keep an eye on that spine of her's...you know I will! How are you doing? Any word on the biopsy? I haven't been able to keep up with the posts lately I hope you and Rob are doing well. As always you are in my thoughts and prayers. xoxo, Ellie and Riley 5 poly > Hi Elli, > Even though I have been way to busy to keep up with all of the posts, I am glad to hear that Riley's appt went well - I was especially glad to hear that the spine should correct itself. What a relief that must have been - and I am sure that you will make sure they keep an eye on it! Hope all is well with you and everyone. > Val > Rob's Mom (4,systemic) > > In a message dated Wed, 21 Aug 2002 10:59:50 PM Eastern Standard Time, skyley8@c... writes: > > > Hi Everyone, > > I just wanted to check in and let you all know how Riley's appointments went. Her eyes are fine and her rheumy was astonished by how well she is doing. I of course got all teary eyed. Her sed rate has gone down from 51 to 19 and he says she has almost normal range of motion. She is to be fitted for a night brace at her next visit to make sure her leg stays straight. The Dynasplint did a perfect job and we will keep it for one more month while we wait for insurance to okay the brace. We are keeping her on the 15 mg of mtx. She even got through the blood test for the mtx study with minimal freak out! We had her back x-ray today and will soon get the results but her rheumy says it is reactive scoliosis (sp?) and nothing to worry about and it should straighten out on it's own. I don't have time to post more right now so to everyone I send big hugs. I'll probably get back on the list more regularly after school starts but I check in every few days to see how everyone is and you are all in my thoughts and prayers. > > xoxo, Ellie and Riley 5 poly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2002 Report Share Posted October 3, 2002 Ellie, Hot diggity dog!That is awesome.Poly can be so devistating for some kids but it sounds like Rileys is mild and may be headed for remission.Which reminds me ANA is usually found in girls with Pauci,so s rheumy never tested him for that or Rheumatoid factor,so Cincinnati did.I need to call and find out the results.Go Riley go,and keep going.I am so happy for you! Love and hugs Becki and 4systemic Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2002 Report Share Posted October 3, 2002 Ellie- A "TB" rating is the very best kind!!! I'm so happy to hear Riley's doing so well. I hope you can get rid of that morning stiffness. 's status continues to be "TB" too. My husband's convinced she's "cured." We haven't discussed taking her off meds, but I'm very reluctant. I'm convinced she'll flare. I'm sure Riley will be happy not to have to wear the splint anymore. Sounds like it worked. Is she still having pain? How long does her morning stiffness last? It doesn't seem like it was so long ago that you were feeling like she'd never feel better. Those meds really do work!! Congrats. Diane (, 3, pauci) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Hi Ellie, That is so exciting about Riley's TB rating!!!!!!(Your rheumy sounds really cool!) I am so glad that her leg has straightened!HOORAY!!!! lots of hugs, Val Rob's Mom (5,systemic) In a message dated 10/2/2002 6:19:10 PM Eastern Standard Time, skyley8@... writes: > Hi Friends, > We just got back from the rheumy and he gave Riley's disease a " TB " rating, when I asked him what that meant he said " totally boring. " Her sed rate is down to 12 YAY! Her ANA is positive and so we have to keep a close watch on her eyes but so far no problems there. He said that he wants to keep her on meds for 6 months because she still has morning stiffness but the swelling on her knees is to a minimum. And...this is really exciting, no more splint!!! We had thought that we were going to have to get a new one to keep her leg straight but he said " It's straight, it can't get any straighter...why splint it? " The most exciting part about that is no $400- CO-pay! (well, not the most exciting but you know what I mean lol) So we have to make sure to stretch and exercise but no more night splint, Woohoo!!! The rest of her labs were good. So I guess in a few months we will try to wean her off first the Vioxx and then the mtx. I will be so nervous taking her off of the mtx. It has made all of the difference but I guess I don't need to think about that right now, right now I'm just gonna try to enjoy the good report and not think to far ahead. Big hugs to everyone. > xoxo, Ellie and Riley 5 poly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2002 Report Share Posted October 8, 2002 Ellie, that is fantabulous news! >From: carneyval@... >Reply- > >Subject: Re: Riley update >Date: Tue, 08 Oct 2002 16:04:06 -0400 > >Hi Ellie, >That is so exciting about Riley's TB rating!!!!!!(Your rheumy sounds really >cool!) I am so glad that her leg has straightened!HOORAY!!!! >lots of hugs, >Val >Rob's Mom (5,systemic) > >In a message dated 10/2/2002 6:19:10 PM Eastern Standard Time, >skyley8@... writes: > > > Hi Friends, > > We just got back from the rheumy and he gave Riley's disease a " TB " >rating, when I asked him what that meant he said " totally boring. " Her sed >rate is down to 12 YAY! Her ANA is positive and so we have to keep a close >watch on her eyes but so far no problems there. He said that he wants to >keep her on meds for 6 months because she still has morning stiffness but >the swelling on her knees is to a minimum. And...this is really exciting, >no more splint!!! We had thought that we were going to have to get a new >one to keep her leg straight but he said " It's straight, it can't get any >straighter...why splint it? " The most exciting part about that is no $400- >CO-pay! (well, not the most exciting but you know what I mean lol) So we >have to make sure to stretch and exercise but no more night splint, >Woohoo!!! The rest of her labs were good. So I guess in a few months we >will try to wean her off first the Vioxx and then the mtx. I will be so >nervous taking her off of the mtx. It has made all of the difference but I >guess I don't need to think about that right now, right now I'm just gonna >try to enjoy the good report and not think to far ahead. Big hugs to >everyone. > > xoxo, Ellie and Riley 5 poly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Dear Riley, Thanks so much for those big hugs! I'm glad you like my name most people think its silly. I like to laugh and it makes me laugh LOL. I like your name very much too....you must be a princess or at least a duchess:):):) Have a great day Princess Riley!!!!!! Keep smiling :):)Tree:):) Re: Riley update Hi Tree, Thank you, I told Riley how proud you are of her. She really likes your name lol. Hope you're feeling well, sending you big hugs. xoxo, Ellie and Riley 5 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Hi Ellie What a wonderful report from the rheumy! Hugs to both you and Riley! Liz (-10-poly) Riley update Hi Friends, We just got back from the rheumy and he gave Riley's disease a "TB" rating, when I asked him what that meant he said "totally boring." Her sed rate is down to 12 YAY! Her ANA is positive and so we have to keep a close watch on her eyes but so far no problems there. He said that he wants to keep her on meds for 6 months because she still has morning stiffness but the swelling on her knees is to a minimum. And...this is really exciting, no more splint!!! We had thought that we were going to have to get a new one to keep her leg straight but he said "It's straight, it can't get any straighter...why splint it?" The most exciting part about that is no $400- CO-pay! (well, not the most exciting but you know what I mean lol) So we have to make sure to stretch and exercise but no more night splint, Woohoo!!! The rest of her labs were good. So I guess in a few months we will try to wean her off first the Vioxx and then the mtx. I will be so nervous taking her off of the mtx. It has made all of the difference but I guess I don't need to think about that right now, right now I'm just gonna try to enjoy the good report and not think to far ahead. Big hugs to everyone. xoxo, Ellie and Riley 5 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2002 Report Share Posted December 8, 2002 Ellie, needless to say I was in tears after reading this wonderful news about Riley... We always say when discharging a child completely after remission; " I hope we won't meet again " and nobody is offended by this (haa, haa...) because obviously everyone hopes that the illness will stay away forever... I wish you both luck and happy holidays! Love, Soili & kids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 Hoorah for Riley!! That is truly wonderful! It is emotional when you see them able to do things that they have not been able to do for awhile! Prayers for her continued success! Michele -----Original Message-----From: skyley8@... [mailto:skyley8@...] Sent: Saturday, December 07, 2002 6:30 PM ; Rustyroom Subject: Riley updateHi everyone, Just a quick update on Riley. We went to physical therapy yesterday and got an early Christmas present. Not only did she see 2 Santa's at Children's Hospital and get an elephant and a Teddy bear but she was discharged! It was really emotional. The therapist was teary eyed and said that Riley could choose the last exercise and she chose to ride the therapy tricycle. Well, PT is on the same floor as the ward that we stayed in overnight on her brothers birthday (for those of you who remember) back when we were undiagnosed and doing all of that testing. Anyway, before we knew it Riley took a turn on that trike and we were in 6 north, riding past the room where this all started when she could hardly walk. I was trying hard not to cry, it just seemed so fitting that physical therapy would end right where it all started. Who knows if we will need PT again in the future, but for now she is moving pretty much like a perfectly healthy 5 year old (save for descending stairs) and for that I am so thankful. Hugs to everyone, you all and all of your children are always in my prayers. Wishing you all a lovely pain free holiday. xoxo, Ellie and Riley 5 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2002 Report Share Posted December 9, 2002 Hoorah for Riley!! That is truly wonderful! It is emotional when you see them able to do things that they have not been able to do for awhile! Prayers for her continued success! Michele -----Original Message-----From: skyley8@... [mailto:skyley8@...] Sent: Saturday, December 07, 2002 6:30 PM ; Rustyroom Subject: Riley updateHi everyone, Just a quick update on Riley. We went to physical therapy yesterday and got an early Christmas present. Not only did she see 2 Santa's at Children's Hospital and get an elephant and a Teddy bear but she was discharged! It was really emotional. The therapist was teary eyed and said that Riley could choose the last exercise and she chose to ride the therapy tricycle. Well, PT is on the same floor as the ward that we stayed in overnight on her brothers birthday (for those of you who remember) back when we were undiagnosed and doing all of that testing. Anyway, before we knew it Riley took a turn on that trike and we were in 6 north, riding past the room where this all started when she could hardly walk. I was trying hard not to cry, it just seemed so fitting that physical therapy would end right where it all started. Who knows if we will need PT again in the future, but for now she is moving pretty much like a perfectly healthy 5 year old (save for descending stairs) and for that I am so thankful. Hugs to everyone, you all and all of your children are always in my prayers. Wishing you all a lovely pain free holiday. xoxo, Ellie and Riley 5 poly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 2003 Report Share Posted January 2, 2003 Hi Ellie, Hooray for Riley!!! - I pray that the remission continues through out the medication taper. Val Rob's Mom (5,systemic) In a message dated 12/24/2002 12:24:29 AM Eastern Standard Time, skyley8@... writes: > Hi Everyone, > We got an early Christmas gift. Riley is in medicated remission. We went to the rheumy on Thursday and got the news. She is now on Vioxx only as needed and we will try to wean her off of the mtx in another 6 months. I still feel like I need to pinch myself to make sure that I'm not dreaming. > It's strange, I feel so blessed but on the other hand it doesn't seem fair that she is doing so well when other kids are having such a difficult time of it. I so wish that this disease would just disappear. > I haven't had much time to post lately and boy do I miss it, but I do try to keep up on reading posts and all of you and your kids are always in my thoughts and prayers. I hope that all of you have a lovely pain free holiday season. > xoxo, Ellie and Riley 5 poly > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 This is it this is the DAY the Helmet comes off for good my SON Riley Has officially Graduated from his Helmet 11 week today. We are so Glad to have are little Bald Son back it's nice to see his Head and see the difference the helmet has made thank God we did the right thing... JULIE JACKSONVILLE,FLORIDA ____________________________________________________ Sports Rekindle the Rivalries. Sign up for Fantasy Football http://football.fantasysports. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2005 Report Share Posted June 30, 2005 This is it this is the DAY the Helmet comes off for good my SON Riley Has officially Graduated from his Helmet 11 week today. We are so Glad to have are little Bald Son back it's nice to see his Head and see the difference the helmet has made thank God we did the right thing... JULIE JACKSONVILLE,FLORIDA ____________________________________________________ Sports Rekindle the Rivalries. Sign up for Fantasy Football http://football.fantasysports. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2005 Report Share Posted July 1, 2005 YEA!!! I'm glad for you and Riley! I bet it is so nice to be graduated!! Congrats on getting the results you wanted and for getting your bald little man back!! Lacy Waydon's mom 8months DOC band 6/20 --- In Plagiocephaly , JULIE CLANCY <looler2005@y...> wrote: > This is it this is the DAY the Helmet comes off for > good my SON Riley Has officially Graduated from his > Helmet 11 week today. We are so Glad to have are > little Bald Son back it's nice to see his Head and see > the difference the helmet has made thank God we did > the right thing... > > > JULIE > JACKSONVILLE,FLORIDA > > > > ____________________________________________________ > Sports > Rekindle the Rivalries. Sign up for Fantasy Football > http://football.fantasysports. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2005 Report Share Posted July 1, 2005 YEA!!! I'm glad for you and Riley! I bet it is so nice to be graduated!! Congrats on getting the results you wanted and for getting your bald little man back!! Lacy Waydon's mom 8months DOC band 6/20 --- In Plagiocephaly , JULIE CLANCY <looler2005@y...> wrote: > This is it this is the DAY the Helmet comes off for > good my SON Riley Has officially Graduated from his > Helmet 11 week today. We are so Glad to have are > little Bald Son back it's nice to see his Head and see > the difference the helmet has made thank God we did > the right thing... > > > JULIE > JACKSONVILLE,FLORIDA > > > > ____________________________________________________ > Sports > Rekindle the Rivalries. Sign up for Fantasy Football > http://football.fantasysports. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2005 Report Share Posted July 1, 2005 Congratulations Riley!!!! and MOM! That is wonderful news! I am a bit jealous as we are just starting out... ) ~ mommy toKylie Jo 10 monthsmild plagio/mocerate brachy/ tortSTARband June 30...and seven other busy kids.......E.J. 10 monthsTort resolved RILEY UPDATE This is it this is the DAY the Helmet comes off forgood my SON Riley Has officially Graduated from hisHelmet 11 week today. We are so Glad to have arelittle Bald Son back it's nice to see his Head and seethe difference the helmet has made thank God we didthe right thing...JULIEJACKSONVILLE,FLORIDA ____________________________________________________ Sports Rekindle the Rivalries. Sign up for Fantasy Football http://football.fantasysports.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2005 Report Share Posted July 1, 2005 Congratulations Riley!!!! and MOM! That is wonderful news! I am a bit jealous as we are just starting out... ) ~ mommy toKylie Jo 10 monthsmild plagio/mocerate brachy/ tortSTARband June 30...and seven other busy kids.......E.J. 10 monthsTort resolved RILEY UPDATE This is it this is the DAY the Helmet comes off forgood my SON Riley Has officially Graduated from hisHelmet 11 week today. We are so Glad to have arelittle Bald Son back it's nice to see his Head and seethe difference the helmet has made thank God we didthe right thing...JULIEJACKSONVILLE,FLORIDA ____________________________________________________ Sports Rekindle the Rivalries. Sign up for Fantasy Football http://football.fantasysports.For more plagio info Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2005 Report Share Posted July 1, 2005 , Congrats!!! Riley. I am so happy for you. Be sure to post before and after pics in the folder. CAROLG --- In Plagiocephaly , JULIE CLANCY <looler2005@y...> wrote: > This is it this is the DAY the Helmet comes off for > good my SON Riley Has officially Graduated from his > Helmet 11 week today. We are so Glad to have are > little Bald Son back it's nice to see his Head and see > the difference the helmet has made thank God we did > the right thing... > > > JULIE > JACKSONVILLE,FLORIDA > > > > ____________________________________________________ > Sports > Rekindle the Rivalries. Sign up for Fantasy Football > http://football.fantasysports. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2005 Report Share Posted July 1, 2005 , Congrats!!! Riley. I am so happy for you. Be sure to post before and after pics in the folder. CAROLG --- In Plagiocephaly , JULIE CLANCY <looler2005@y...> wrote: > This is it this is the DAY the Helmet comes off for > good my SON Riley Has officially Graduated from his > Helmet 11 week today. We are so Glad to have are > little Bald Son back it's nice to see his Head and see > the difference the helmet has made thank God we did > the right thing... > > > JULIE > JACKSONVILLE,FLORIDA > > > > ____________________________________________________ > Sports > Rekindle the Rivalries. Sign up for Fantasy Football > http://football.fantasysports. Quote Link to comment Share on other sites More sharing options...
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