Guest guest Posted July 26, 2008 Report Share Posted July 26, 2008 Hey n: We will keep all of you in thought & prayer. I feel so badly for Holly. I will get your address from Donna and send something out next week. Keep us posted! Beth & Hannah Sending prayers & happy thoughts, Beth Holly Update Hi Everyone.... ......... ..just a really quick update, I need to get back to Holly....... ......we were in the hospital from Monday night until today....... ....long and tiring.....Holly remains in a lot of pain........ .....what was done was she has had 3 ivs with solumedrol this week,kept her on the orencia schedule for now, they changed her from motrin to mobic....... added a nausea medicine, adding a sleeping medicine.... ......... ..and she is on morphine every 3 hours as needed for pain........ ...we have many follow up appts to make........ ..and we see the rheumie again on Monday...... ..keep her in your prayers please she is having such a rough go!!! I am going to send my address to Donna an Robbin, if anyone wants to send her a card, I know that will help her feel better...... ......I will try and post again tomorrow!!! Thanks for everything!! ! n and Holly (14) Systemic jra since 9/94 ************ **Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse .com/fantasyaffa ir?ncid=aolspr00 050000000020) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2008 Report Share Posted July 26, 2008 n, I am so sorry for all that you and your child are going through. Know that you both are in my prayers! marie Mommy to Bradley (Pauci JRA and Uveitis) Charlie and :-) ajaomom@... wrote: > > Hi Everyone...............just a really quick update, I need to get > back to > Holly.............we were in the hospital from Monday night until > today...........long and tiring.....Holly remains in a lot of > pain............what was > done was she has had 3 ivs with solumedrol this week,kept her on the > orencia > schedule for now, they changed her from motrin to mobic.......added a > nausea > medicine, adding a sleeping medicine...............and she is on morphine > every 3 hours as needed for pain...........we have many follow up > appts to > make..........and we see the rheumie again on Monday........keep her > in your > prayers please she is having such a rough go!!! I am going to send my > address > to Donna an Robbin, if anyone wants to send her a card, I know that will > help her feel better............I will try and post again tomorrow!!! > Thanks > for everything!!! > > n and Holly (14) > Systemic jra since 9/94 > > **************Get fantasy football with free live scoring. Sign up for > FanHouse Fantasy Football today. > (http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020 > <http://www.fanhouse.com/fantasyaffair?ncid=aolspr00050000000020>) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2008 Report Share Posted July 26, 2008 I'd like Holly's address too, if either Donna or Robbin would send it to me. and Rob 19 JAS Holly Update > > > Hi Everyone.... ......... ..just a really quick update, I need > to get back to > Holly....... ......we were in the hospital from Monday night > until > today....... ....long and tiring.....Holly remains in a lot of > pain........ ....what was > done was she has had 3 ivs with solumedrol this week,kept her on > the orencia > schedule for now, they changed her from motrin to mobic....... > added a nausea > medicine, adding a sleeping medicine.... ......... ..and she is > on morphine > every 3 hours as needed for pain........ ...we have many follow > up appts to > make........ ..and we see the rheumie again on Monday...... > ..keep her in your > prayers please she is having such a rough go!!! I am going to > send my address > to Donna an Robbin, if anyone wants to send her a card, I know > that will > help her feel better...... ......I will try and post again > tomorrow!!! Thanks > for everything!! ! > > n and Holly (14) > Systemic jra since 9/94 > > ************ **Get fantasy football with free live scoring. Sign > up for > FanHouse Fantasy Football today. > (http://www.fanhouse .com/fantasyaffa ir?ncid=aolspr00 050000000020) > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Okay guys here goes.........I have sat to do this email many times, but just am having a hard time putting words to " paper " . Holly is still having a rough go...............she is currently taking orencia, solumedral by iv, 50mgs of pred a day, mobic and methotrexate for her arthritis.........she remains on morphine for pain, and is taking amitriptyline for a sleep aid........she is currently having 2 to 3 hours of ot/pt a day.........and will be going back into ccmc (connecticut childrens medical center) for a week of rehab starting Monday. I am truly hoping during that time we can get her off morphine. Her hips, knees, elbows and shoulders are the worst joints right now, but her wrists hand ankles and feet are all also giving her trouble. We actually have ordered her a wheelchair so that she will be able to make it to school this year. On the upside for her she is very excited about school, it is her first year of high school. I am hoping to get her under some control before school starts. It is going to be very tiring for her at this point. And the biggest excitement for her right now is jra camp, she is scheduled to go on the 17th, so please pray that all goes well at the hospital next week and she is able to go. Please if you would like to send cards next week that would be wonderful.............ccmc also has a place to send electronic cards that they print out and deliver to the kids, we didn't find that out until the last day we were there a few weeks ago. The website for ccmc is _Connecticut Children's Medical Center - Kids are great! We just make 'em better._ (http://www.ccmckids.org/) n and Holly **************Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. (http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Hi ........Holly is not there this week, she was a week ago and will be back in again on Monday for rehab......... n and Holly (14) Systemic jra since 9/94 **************Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. (http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Hi n, I'm so sorry that Holly is having such a terrible time. It is so difficult, for all of you. Is Holly at the children's hospital in Hartford? My thoughts are with you. All my best thoughts and wishes, (and Ezra, 12 yr. old systemic) Holly Update Okay guys here goes.........I have sat to do this email many times, but just am having a hard time putting words to " paper " . Holly is still having a rough go...............she is currently taking orencia, solumedral by iv, 50mgs of pred a day, mobic and methotrexate for her arthritis.........she remains on morphine for pain, and is taking amitriptyline for a sleep aid........she is currently having 2 to 3 hours of ot/pt a day.........and will be going back into ccmc (connecticut childrens medical center) for a week of rehab starting Monday. I am truly hoping during that time we can get her off morphine. Her hips, knees, elbows and shoulders are the worst joints right now, but her wrists hand ankles and feet are all also giving her trouble. We actually have ordered her a wheelchair so that she will be able to make it to school this year. On the upside for her she is very excited about school, it is her first year of high school. I am hoping to get her under some control before school starts. It is going to be very tiring for her at this point. And the biggest excitement for her right now is jra camp, she is scheduled to go on the 17th, so please pray that all goes well at the hospital next week and she is able to go. Please if you would like to send cards next week that would be wonderful.............ccmc also has a place to send electronic cards that they print out and deliver to the kids, we didn't find that out until the last day we were there a few weeks ago. The website for ccmc is _Connecticut Children's Medical Center - Kids are great! We just make 'em better._ (http://www.ccmckids.org/) n and Holly **************Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. (http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 Hi n, Our thoughts and prayers are with you and Holly right now! Starting Highschool is very exciting, but hard enough for a kid without health issues going on at the same time. Hopefully this year will be exciting enough to take her mind off of some of her pain. Camp also sounds pretty exciting, kind of a pay off for all of the hard work she is going to be doing next week in rehab! We will most definately be sending a hospital card....and a few cyber hugs as well. Hopefully her therapists will be awesome and make some fun for her along with all of the not so fun stuff! It can really make a difference when it comes to getting things done! Diane and Maggie age 11 (OI,CP, Systemic onset..now POLY JIA,Uveitis, PIDD) > From: ajaomom@... <ajaomom@...> > Subject: Holly Update > , Fletcher@..., ann1009961@..., youngmaddy2003@..., KIMAR2001@..., Auntecooke@..., 4barron4@... > Date: Thursday, August 7, 2008, 3:46 PM > Okay guys here goes.........I have sat to do this email many > times, but just > am having a hard time putting words to " paper " . > Holly is still having a > rough go...............she is currently taking orencia, > solumedral by iv, 50mgs > of pred a day, mobic and methotrexate for her > arthritis.........she remains > on morphine for pain, and is taking amitriptyline for a > sleep aid........she > is currently having 2 to 3 hours of ot/pt a > day.........and will be going back > into ccmc (connecticut childrens medical center) for a > week of rehab > starting Monday. I am truly hoping during that time we > can get her off morphine. > Her hips, knees, elbows and shoulders are the worst joints > right now, but her > wrists hand ankles and feet are all also giving her > trouble. We actually have > ordered her a wheelchair so that she will be able to make > it to school this > year. On the upside for her she is very excited about > school, it is her first > year of high school. I am hoping to get her under some > control before school > starts. It is going to be very tiring for her at this > point. And the biggest > excitement for her right now is jra camp, she is scheduled > to go on the 17th, > so please pray that all goes well at the hospital next > week and she is able > to go. Please if you would like to send cards next week > that would be > wonderful.............ccmc also has a place to send > electronic cards that they print > out and deliver to the kids, we didn't find that out > until the last day we > were there a few weeks ago. The website for ccmc is > _Connecticut Children's > Medical Center - Kids are great! We just make 'em > better._ > (http://www.ccmckids.org/) > > > > n and Holly > > > > **************Looking for a car that's sporty, fun and > fits in your budget? > Read reviews on AOL Autos. > (http://autos.aol.com/cars-BMW-128-2008/expert-review?ncid=aolaut00050000000017 > ) > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 n, we will continue to pray for Holly that she will have big improvement soon and be able to enjoy camp and her first year of high school. & From: ajaomom@... <ajaomom@...> Subject: Holly Update , Fletcher@..., ann1009961@..., youngmaddy2003@..., KIMAR2001@..., Auntecooke@..., 4barron4@... Date: Thursday, August 7, 2008, 8:46 AM Okay guys here goes........ .I have sat to do this email many times, but just am having a hard time putting words to " paper " . Holly is still having a rough go.......... .....she is currently taking orencia, solumedral by iv, 50mgs of pred a day, mobic and methotrexate for her arthritis... ......she remains on morphine for pain, and is taking amitriptyline for a sleep aid........she is currently having 2 to 3 hours of ot/pt a day......... and will be going back into ccmc (connecticut childrens medical center) for a week of rehab starting Monday. I am truly hoping during that time we can get her off morphine. Her hips, knees, elbows and shoulders are the worst joints right now, but her wrists hand ankles and feet are all also giving her trouble. We actually have ordered her a wheelchair so that she will be able to make it to school this year. On the upside for her she is very excited about school, it is her first year of high school. I am hoping to get her under some control before school starts. It is going to be very tiring for her at this point. And the biggest excitement for her right now is jra camp, she is scheduled to go on the 17th, so please pray that all goes well at the hospital next week and she is able to go. Please if you would like to send cards next week that would be wonderful... ......... .ccmc also has a place to send electronic cards that they print out and deliver to the kids, we didn't find that out until the last day we were there a few weeks ago. The website for ccmc is _Connecticut Children's Medical Center - Kids are great! We just make 'em better._ (http://www.ccmckids .org/) n and Holly ************ **Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. (http://autos. aol.com/cars- BMW-128-2008/ expert-review? ncid=aolaut00050 000000017 ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 n, I'm no where near as active as I was when 's Arthur was active but when I joined it seems like Holly was just on Plaquenil and mayby MTX,things where definately more calm Arthur wise.I would love to send her an animated e-mail with my now Jr.High daughters help.Something that would bring a smile and hopefuly a giggle.You can give info on this addy or arthurnator@.... Many prayers for Holly and much love.I feal in my heart a reconnection to this list,especially the old timers that I used to know so well. Love and hugs Becki and 10systemic onset Holly Update Okay guys here goes........ .I have sat to do this email many times, but just am having a hard time putting words to " paper " . Holly is still having a rough go.......... .....she is currently taking orencia, solumedral by iv, 50mgs of pred a day, mobic and methotrexate for her arthritis... ......she remains on morphine for pain, and is taking amitriptyline for a sleep aid........she is currently having 2 to 3 hours of ot/pt a day......... and will be going back into ccmc (connecticut childrens medical center) for a week of rehab starting Monday. I am truly hoping during that time we can get her off morphine. Her hips, knees, elbows and shoulders are the worst joints right now, but her wrists hand ankles and feet are all also giving her trouble. We actually have ordered her a wheelchair so that she will be able to make it to school this year. On the upside for her she is very excited about school, it is her first year of high school. I am hoping to get her under some control before school starts. It is going to be very tiring for her at this point. And the biggest excitement for her right now is jra camp, she is scheduled to go on the 17th, so please pray that all goes well at the hospital next week and she is able to go. Please if you would like to send cards next week that would be wonderful... ......... .ccmc also has a place to send electronic cards that they print out and deliver to the kids, we didn't find that out until the last day we were there a few weeks ago. The website for ccmc is _Connecticut Children's Medical Center - Kids are great! We just make 'em better._ (http://www.ccmckids .org/) n and Holly ************ **Looking for a car that's sporty, fun and fits in your budget? Read reviews on AOL Autos. (http://autos. aol.com/cars- BMW-128-2008/ expert-review? ncid=aolaut00050 000000017 ) Quote Link to comment Share on other sites More sharing options...
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