Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 ! I am crying right now! I have spent many moons with Rob and you in my prayers. Remission, wow! What an amazing gift! What great news about Rob and school and buffness and everything!!! It sounds like he is growing into an amazing young man. You have so much to be proud of! God love Uncle Rusty. Please send him my love. I hope he heals quickly. He has been such an inspiration to so many. Skyler is great, in his first year of high school. Time does fly. I wish I could have spent more time with you in San Diego but I am so glad we were able to meet. My hubby is great, we are great. Just the usual ups and downs of life. Mostly ups. How is your hubbY? Wow, I just can't believe Rob is off all meds. What a miracle! Ellie & Riley 11 Poly > > Hi Ellie! I'm so glad to see you posting! Can you believe, I was just thinking about you the other day. I was also so glad to hear that Riley is STILL in remission! WOW!! Miraculous! > Rob is now 19 and he is also in remission!! He is off all meds now. He was allowed to go off the methotrexate, and he decided to wean himself off the Enbrel, too. He is getting buff and working out several days a week. He had surgery a year and a half ago to correct his chest deformity (it was pressing on his heart). He will get the titanium bar out in 2009; he is hoping for getting it out spring break. He is a 3rd semester freshman at IUPUI in Indianapolis and majoring in criminal justice. I'm so proud of him! > Dear Uncle Rusty just underwent several major surgeries for a fracture in his spine. He is in a halo traction device for months until it heals. He is also doing great and has his usual amazing spirit. > I am so glad we got to meet you in person in San Diego, way back in 2004. It is so good to see you posting and hear the good news! How are Skylar and your hubbie? > and Rob 19 JAS > > hi > > > > Hi everyone, it has been so long since I have checked in with > > the JRA list. For those of you > > who remember us, Riley is still blessed with remission after > > almost 3 years. > > > > I wanted to check and see how everyone's doing. Everybody on > > this list weather or not I know > > them on a personal level are in my nightly prayers. > > > > I also wanted to mention a 2 day soccer camp in Culver City, CA > > called Camp Courage. If any > > one is in the Los Angeles area and you would like information > > please let me know. This camp > > has been created by a 15 year old girl named a who was > > diagnosed with Poly JRA a > > year ago. She is the camps founder and > > director...amazing. The dates are December 20th > > and 21st from (I think) 8:30 am to 12:30 pm both days. Her > > mother asked me to mention it > > to any one that I thought might be interested. Riley will > > be attending. > > > > Thanks! > > > > Ellie > > mom to Riley 11 poly > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Ellie, OMG it is so GREAT to get a Riley update and to hear about true unmedicated remission. is on his 2nd full medicated remission and is still VERY PO about no football.Not Arthur but the several hundred dollars to fully protect him.He is now 10 1/2 around 109lb but the growth has slowed.Strange that with active arthritis and pred and without he grew 3 " a yr.Now it seems to be 1 1/2 and only around 4'10 " .He is still a big boy and so handsome and popular.So popular and talkative that most of the time his desk is alone against the wall. Could you send a picture of your gorgeous gal? Miss you bunches but under the wonderful circumstances it's ok.So glad you drove down to SD over 4 yrs ago so a bunch of us could meet. Miss you and still love you and your gorgeous clan.Have a safe and very Merry Christmas. Give Riley a great big hug from the larson family. Becki and 10 systemic onset Allan and Shelby too who turns 13 at 11:59pm 12/14.....Want another daughter/LOL ________________________________ From: and Schulz <snooksmama@...> Sent: Tuesday, December 9, 2008 9:09:47 PM Subject: ELLIE!!!!!!!!!!!!!!!! Hi Ellie! I'm so glad to see you posting! Can you believe, I was just thinking about you the other day. I was also so glad to hear that Riley is STILL in remission! WOW!! Miraculous! Rob is now 19 and he is also in remission!! He is off all meds now. He was allowed to go off the methotrexate, and he decided to wean himself off the Enbrel, too. He is getting buff and working out several days a week. He had surgery a year and a half ago to correct his chest deformity (it was pressing on his heart). He will get the titanium bar out in 2009; he is hoping for getting it out spring break. He is a 3rd semester freshman at IUPUI in Indianapolis and majoring in criminal justice. I'm so proud of him! Dear Uncle Rusty just underwent several major surgeries for a fracture in his spine. He is in a halo traction device for months until it heals. He is also doing great and has his usual amazing spirit. I am so glad we got to meet you in person in San Diego, way back in 2004. It is so good to see you posting and hear the good news! How are Skylar and your hubbie? and Rob 19 JAS hi @group s.com > Hi everyone, it has been so long since I have checked in with > the JRA list. For those of you > who remember us, Riley is still blessed with remission after > almost 3 years. > > I wanted to check and see how everyone's doing. Everybody on > this list weather or not I know > them on a personal level are in my nightly prayers. > > I also wanted to mention a 2 day soccer camp in Culver City, CA > called Camp Courage. If any > one is in the Los Angeles area and you would like information > please let me know. This camp > has been created by a 15 year old girl named a who was > diagnosed with Poly JRA a > year ago. She is the camps founder and > director...amazing. The dates are December 20th > and 21st from (I think) 8:30 am to 12:30 pm both days. Her > mother asked me to mention it > to any one that I thought might be interested. Riley will > be attending. > > Thanks! > > Ellie > mom to Riley 11 poly > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Ellie, 2 computers in the house 308 inbox messages and you have me crying too.I miss you so much.To add more about he was diagnosed with Dyslexia,working memory disorder and a prosessing disorder almost 3 yrs ago.After only 1 1/2 yrs in resource for 1 hour a day they put him on consult last June and his first report card this yr he made true honor role.He still has trouble with writing,reading,spelling and English,has to work realy hard but his teacher said he can make a great engineer,he's the only one that gets Geometry in his class.Math scores back at 6 were so high they almost over ruled.He does stuff I never seen until 10th grade.He is also the best time teller and we do not have a single analog clock in our house.They also kicked him out of speach last yr after 6yrs.It's funny he started elementry school the same time as his sister.She is now in 7th grade and he's in 4th with a repeat k. Love and miss you Becki and 10 systemic The Barefoot Tn. Flash Give Riley another big hug only this one is from a big,strong,handsome young man who loves to talk and text ________________________________ From: skyleysmom1 <skyley@...> Sent: Tuesday, December 9, 2008 9:55:47 PM Subject: Re: ELLIE!!!!!!!!!!!!!!!! ! I am crying right now! I have spent many moons with Rob and you in my prayers. Remission, wow! What an amazing gift! What great news about Rob and school and buffness and everything!! ! It sounds like he is growing into an amazing young man. You have so much to be proud of! God love Uncle Rusty. Please send him my love. I hope he heals quickly. He has been such an inspiration to so many. Skyler is great, in his first year of high school. Time does fly. I wish I could have spent more time with you in San Diego but I am so glad we were able to meet. My hubby is great, we are great. Just the usual ups and downs of life. Mostly ups. How is your hubbY? Wow, I just can't believe Rob is off all meds. What a miracle! Ellie & Riley 11 Poly > > Hi Ellie! I'm so glad to see you posting! Can you believe, I was just thinking about you the other day. I was also so glad to hear that Riley is STILL in remission! WOW!! Miraculous! > Rob is now 19 and he is also in remission!! He is off all meds now. He was allowed to go off the methotrexate, and he decided to wean himself off the Enbrel, too. He is getting buff and working out several days a week. He had surgery a year and a half ago to correct his chest deformity (it was pressing on his heart). He will get the titanium bar out in 2009; he is hoping for getting it out spring break. He is a 3rd semester freshman at IUPUI in Indianapolis and majoring in criminal justice. I'm so proud of him! > Dear Uncle Rusty just underwent several major surgeries for a fracture in his spine. He is in a halo traction device for months until it heals. He is also doing great and has his usual amazing spirit. > I am so glad we got to meet you in person in San Diego, way back in 2004. It is so good to see you posting and hear the good news! How are Skylar and your hubbie? > and Rob 19 JAS > > hi > @group s.com > > > Hi everyone, it has been so long since I have checked in with > > the JRA list. For those of you > > who remember us, Riley is still blessed with remission after > > almost 3 years. > > > > I wanted to check and see how everyone's doing. Everybody on > > this list weather or not I know > > them on a personal level are in my nightly prayers. > > > > I also wanted to mention a 2 day soccer camp in Culver City, CA > > called Camp Courage. If any > > one is in the Los Angeles area and you would like information > > please let me know. This camp > > has been created by a 15 year old girl named a who was > > diagnosed with Poly JRA a > > year ago. She is the camps founder and > > director...amazing. The dates are December 20th > > and 21st from (I think) 8:30 am to 12:30 pm both days. Her > > mother asked me to mention it > > to any one that I thought might be interested. Riley will > > be attending. > > > > Thanks! > > > > Ellie > > mom to Riley 11 poly > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hi Becki!!!! Wow, it is great to hear from you! Sorry this took so long, my husbands business partner passed away and things have been crazy. I don't have the messages coming into my inbox so I didn't know that you had sent one. Do you have a facebook page? If you do you can see several photos of my family on mine including little miss. If not I will figure out which one to send and post one to the group. Maybe I'll do that anyway, but I'll have to figure out how. I think that the last photos I posted helped me with! What great news about ! I am so happy to hear that he is doing so well! Are there new photos of him posted? Let me know if you have facebook and I'll add you as a friend. What about you ? Facebook? Now, off to try to figure out how to post a photo Big teary eyed hugs! Ellie & Riley 11 poly > > > > Hi Ellie! I'm so glad to see you posting! Can you believe, I was just thinking about you > the other day. I was also so glad to hear that Riley is STILL in remission! WOW!! > Miraculous! > > Rob is now 19 and he is also in remission!! He is off all meds now. He was allowed to go > off the methotrexate, and he decided to wean himself off the Enbrel, too. He is getting > buff and working out several days a week. He had surgery a year and a half ago to correct > his chest deformity (it was pressing on his heart). He will get the titanium bar out in 2009; > he is hoping for getting it out spring break. He is a 3rd semester freshman at IUPUI in > Indianapolis and majoring in criminal justice. I'm so proud of him! > > Dear Uncle Rusty just underwent several major surgeries for a fracture in his spine. He is > in a halo traction device for months until it heals. He is also doing great and has his usual > amazing spirit. > > I am so glad we got to meet you in person in San Diego, way back in 2004. It is so good > to see you posting and hear the good news! How are Skylar and your hubbie? > > and Rob 19 JAS > > > > hi > > @group s.com > > > > > Hi everyone, it has been so long since I have checked in with > > > the JRA list. For those of you > > > who remember us, Riley is still blessed with remission after > > > almost 3 years. > > > > > > I wanted to check and see how everyone's doing. Everybody on > > > this list weather or not I know > > > them on a personal level are in my nightly prayers. > > > > > > I also wanted to mention a 2 day soccer camp in Culver City, CA > > > called Camp Courage. If any > > > one is in the Los Angeles area and you would like information > > > please let me know. This camp > > > has been created by a 15 year old girl named a who was > > > diagnosed with Poly JRA a > > > year ago. She is the camps founder and > > > director...amazing. The dates are December 20th > > > and 21st from (I think) 8:30 am to 12:30 pm both days. Her > > > mother asked me to mention it > > > to any one that I thought might be interested. Riley will > > > be attending. > > > > > > Thanks! > > > > > > Ellie > > > mom to Riley 11 poly > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.