tag:blogger.com,1999:blog-8320663212130410269.comments2023-06-22T09:46:05.665-04:00Gavin's Story! Living with Juvenile Arthritis...Unknownnoreply@blogger.comBlogger32125tag:blogger.com,1999:blog-8320663212130410269.post-55961690687379087342012-03-05T15:27:01.786-05:002012-03-05T15:27:01.786-05:00Hi, I volunteer with IAAM (International Autoimmun...Hi, I volunteer with IAAM (International Autoimmune Arthritis Movement~formerly the Buckle-Me-Up Movement!). What we've be working on in February and March has been reaching out to people on our JA blogger list and asking if we can post them as a resource on the JA page. To start, could we have contact info from you to add to our blogger list for our records. And if you give us the info, then we will also post your blog as a resource for others on the JA page. Please email me at danalm_iaam@yahoo.com and let me know.<br /> We also invite you to participate in World Autoimmune Arthritis Day on May 20th 2012!<br /><br /> World Autoimmune Arthritis Day<br /> events.r20.constantcontact.com<br /><br /> Join us for a 47 hour, Global Online Virtual Convention aimed to bring global awareness while learning more about your disease and ways to manage it best!<br /><br />Thanks, Dana MDana Asmara Morningstar-Martonhttps://www.blogger.com/profile/11825644957086048495noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-6054175325378060922012-02-11T13:27:41.126-05:002012-02-11T13:27:41.126-05:00My heart goes out to you and your little sweethear...My heart goes out to you and your little sweetheart, Gavin.<br /><br />One of the things that I keep in mind before my surgeries is this: I'm going for surgery because I need it to make my life better or at least, stabilize it.<br /><br />When I had surgery for atlanto-axial instability, the surgical cautions were exactly the same for if I didn't have them done - blindness, stroke or death. I listen to the cautions/warnings, but don't take them to heart. <br /><br />Here's to a timely surgery, a quick recovery and greater ease!Marianna Paulsonhttp://www.rheumfuloftips.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-17443941972111359912011-08-03T16:02:11.333-04:002011-08-03T16:02:11.333-04:00My 6 year old daughter was recently diagnosed with...My 6 year old daughter was recently diagnosed with UC as well, and I have so many questions for you, can we talk via email? grace_photos@yahoo.comValerie Smithhttps://www.blogger.com/profile/02901294732586222656noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-17476689135602544572011-07-05T20:43:38.862-04:002011-07-05T20:43:38.862-04:00Hi Gavin and Family
My name is Jenna and I came ac...Hi Gavin and Family<br />My name is Jenna and I came across your site. U are an amazing, courageous, strong and determiend fighter. U are a brave warrior, inspirational hero. I was born with a rare joint bone disease, and have been diagnosed with many more conditions. I love it when people sign my guestbook. www.miraclechamp.webs.comSmilen Champhttps://www.blogger.com/profile/16312018180245012719noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-25907295642572267542011-06-06T16:38:44.096-04:002011-06-06T16:38:44.096-04:00Julie,
I wanted to share this article with you. It...Julie,<br />I wanted to share this article with you. It puts a high note on everything I think. It links a early diagnosis of RA with a decreased occurrence of joint destruction and improved chances of DMARD-free disease remission.<br />http://www.dailyrx.com/news-article/timing-everything-10674.htmlAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-14462496502064780572011-04-13T12:33:15.725-04:002011-04-13T12:33:15.725-04:00I am following your blog....my daughter, who just ...I am following your blog....my daughter, who just turned 8, was diagnosised with RA. It has been NO FUN for any of us. We are new to this "club" and I admire your family and strengthAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-83471365094730970682011-04-05T07:24:57.475-04:002011-04-05T07:24:57.475-04:00Hi,
Just came across this blog via Facebook. Wha...Hi,<br /><br />Just came across this blog via Facebook. What an inspiration your young man is to the world. <br /><br />I'm 35 years old and was diagnosed with JRA when I was 18 months old. It has now transferred to RA. Whilst I really don't know a different life and wouldn't change who it has made me today, there are days when life is really tough - but I'm talking to the converted here right?<br /><br />Arthritis is such a lonely condition and very misunderstood in society. The pain is excruciating and it's a daily struggle of the mind. I have just had my second child - thankfully, after living on medication - and the pain has hit another level.<br /><br />Gavin's blog makes me feel less alone and for that I'm truly grateful. <br /><br />Thank you,<br /><br />Shan (Australia) xoShanhttps://www.blogger.com/profile/03035704646570608713noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-24292014841297331402011-04-03T00:02:39.062-04:002011-04-03T00:02:39.062-04:00Julie - just sent you an email through YouTube, bu...Julie - just sent you an email through YouTube, but saw you mentioned Shands and Gainesville, so I'm guessing you're in Florida. If so, the family I mentioned I met online who also has a child with the three illnesses that Gavin and my daughter have lives in Florida and I think may even go to Shands. You may know them, but if not, I can put you in touch. The girl is 5 too.<br />SusanSusanhttps://www.blogger.com/profile/14627615240337131630noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-2571771079687014792011-04-02T18:09:47.152-04:002011-04-02T18:09:47.152-04:00Julie & Tyler,
Elliott keeps us updated weekl...Julie & Tyler, <br />Elliott keeps us updated weekly on Gavin. Such a great video on Gavin, thank you for sharing it! The LIttle Gasparilla pictures are my favorite!<br />We think of you all often and keep Gavin close or our hearts! Love, EveAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-81468516436181818552011-03-25T18:40:59.512-04:002011-03-25T18:40:59.512-04:00ALWAYS praying for Gavin and your family! Hey, he ...ALWAYS praying for Gavin and your family! Hey, he shares a very special birthday with my 1st born. She will be 13 this year.Amy Cunninghamhttps://www.blogger.com/profile/03415639964305589674noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-84829099899773446712011-03-18T00:43:19.645-04:002011-03-18T00:43:19.645-04:00Thank you guys!
xxooThank you guys!<br />xxooGavin's Story! Living with Juvenile Arthritis...https://www.blogger.com/profile/08805162190281367388noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-27313164559823978412011-03-18T00:38:56.724-04:002011-03-18T00:38:56.724-04:00Aw, Julie... We love you guys! You are always in ...Aw, Julie... We love you guys! You are always in my thoughts and prayers. I think we all have nights like that. Some days it hits me really hard. I think it will always be like that. And you have had to prepare him for surgery so many times!!! Ugh! What a breakdown you must be fighting. You have so many prayers coming your way, and Gavin is such a strong, good little man. Hugs to you & your boys!Amadayhttps://www.blogger.com/profile/07951303205524536934noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-82707898663619588932011-03-18T00:13:47.368-04:002011-03-18T00:13:47.368-04:00Gavin is a strong boy, and is lucky to have such a...Gavin is a strong boy, and is lucky to have such a strong parent as yourself. I will keep him in my thoughts and prayers. Best wishes for all the medical procedures, the class photo, and the birthday party!RA Guyhttp://www.rheumatoidarthritisguy.comnoreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-31607534665073938822011-02-22T22:03:24.617-05:002011-02-22T22:03:24.617-05:00What a big accomplishment to find a new eye md and...What a big accomplishment to find a new eye md and one that you all like. And to top it off--- Healthy eyes!!!! Please know Gavin is my prayers-- and the closer we get to surgery date kids will be praying for their friend, too!! <br /><br />See you tomorrow. Not the same as a "playdate"-- but closest thing to a playdate in the infusion room!!Anonymoushttps://www.blogger.com/profile/13405391515898480443noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-85108596845653275202011-02-22T20:25:08.996-05:002011-02-22T20:25:08.996-05:00I hope infusion day goes well and time passes quic...I hope infusion day goes well and time passes quickly.Lentini Familyhttps://www.blogger.com/profile/02298681320327634181noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-21529348484015106532011-02-11T00:20:27.835-05:002011-02-11T00:20:27.835-05:00Julie, I am so happy to hear this. I have been th...Julie, I am so happy to hear this. I have been thinking a lot about you all this past week or two. I've been wondering how Gavin is doing. I'm so glad that he's feeling better. How is he handling it all? I imagine that, like so many of our kids, it's just another thing to him, and he's bopping along like always. I hope so, anyway. It's so sad that things have to be so hard for these kids, but I'm so happy that he's doing better!!! Has he finally gotten out of the being sick, feeling healthier? And YAY!!! on the steroid puffiness! (Pass some of that my way, please!)Amadayhttps://www.blogger.com/profile/07951303205524536934noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-59066818736197766882011-02-10T20:31:14.644-05:002011-02-10T20:31:14.644-05:00Well it's about time to be on the "up-sid...Well it's about time to be on the "up-side" of this...I am so glad treatment is working and he is feeling some relief. I think of you all often and you and your family inspire our family.Lentini Familyhttps://www.blogger.com/profile/02298681320327634181noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-17366779749794960442011-02-10T18:21:25.168-05:002011-02-10T18:21:25.168-05:00FABULOUS NEWS!!! So happy to read this! It has bee...FABULOUS NEWS!!! So happy to read this! It has been a long time coming huh?Amy Cunninghamhttps://www.blogger.com/profile/03415639964305589674noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-44150006833040350802011-01-13T23:57:52.129-05:002011-01-13T23:57:52.129-05:00I'm so sorry, Julie :( I wondered. I figured...I'm so sorry, Julie :( I wondered. I figured that it had to be something that knocked you for a loop to not have busted out with it sooner. I've been checking as often as I can for updates. Well, at least now ya know... for better or worse. I don't know anything about UC. I'll have to read up. Emily was HORRIBLE on the Adivan, too. She screamed the whole time that she was on it. She thought they were trying to kill her. We have the bravest, most courageous kids out there. Our group is blessed that way. I'm sorry we didn't get to see you that night. She crashed as soon as we left. And she NEVER sleeps in the car!<br />I hope that now your poor little man can HEAL properly, and eventually get that darn eye surgery. One day, things will settle down. I swear, they will. I bet you thought you'd never be this strong. You rock! Love you guys <3Amadayhttps://www.blogger.com/profile/07951303205524536934noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-27313169514282879322011-01-13T14:26:27.331-05:002011-01-13T14:26:27.331-05:00Oh sweetie :( My heart breaks for Gavin. So much f...Oh sweetie :( My heart breaks for Gavin. So much for a little boy to go through. And I know this can't be easy on the rest of the family either. Y'all down there in Florida are so fortunate to have each other though. How wonderful that he had so many visitors that can really understand.<br />BTW, the blog looks GREAT!Amy Cunninghamhttps://www.blogger.com/profile/03415639964305589674noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-61206038385433069292011-01-05T12:08:48.739-05:002011-01-05T12:08:48.739-05:00Good luck!Good luck!Nicolehttps://www.blogger.com/profile/00207906868551544748noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-85274518879627891842011-01-05T12:07:58.291-05:002011-01-05T12:07:58.291-05:00Poor Gavin…I hope he feels better soon.Poor Gavin…I hope he feels better soon.Nicolehttps://www.blogger.com/profile/00207906868551544748noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-76992891223133785882011-01-01T20:31:27.064-05:002011-01-01T20:31:27.064-05:00Julie, you and Gavin are so amazing. Your family i...Julie, you and Gavin are so amazing. Your family is always in oour thoughts and prayers. Much love to you allChicken's Mommyhttps://www.blogger.com/profile/02651899398262681424noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-72449704913985142382010-12-30T15:10:46.680-05:002010-12-30T15:10:46.680-05:00My daughter was diagnosed with JRA the week before...My daughter was diagnosed with JRA the week before Thanksgiving. I’ve slowly been reading the blogs that I have been able to find and I got the chance to read some of Gavin’s today. I hope Gavin’s surgery went well! This is all so new and unknown for us, which I’m sure you can understand and I have no idea what the future holds. Bevin has been on Naproxen for over 3 weeks (an OTC anti-inflammatory for over 2 weeks prior to the Naproxen) and it hasn’t made a difference, we see the Rheumatologist for a follow in mid-Jan to see where we go from here. Her eye exam came back fine thou. She has Poly, currently both hips, both knees and her left ankle are affected…it looks like her fingers may also be affected now. She’s only 1 so she can’t really tell us one way or the other. It’s nice to be able to find all these other people out there. <br /><br />My thoughts are with Gavin and your family! I will keep my eye out for a post with a surgery update!<br /><br />Nicole <br /><br />We recently started a blog for my daughter if you would like to read more about her story:<br />www.bevinsadventureswithjra.blogspot.comNicolehttps://www.blogger.com/profile/00207906868551544748noreply@blogger.comtag:blogger.com,1999:blog-8320663212130410269.post-45235627228368662082010-12-20T15:54:51.408-05:002010-12-20T15:54:51.408-05:00I can't see through my tears to write. We are...I can't see through my tears to write. We are all praying for your family that all goes well this time and Gavin's surgery will be successful.<br />ps, what was the big surprise foe Christmas??<br />love, <br />all the Carmine'sAnonymoushttps://www.blogger.com/profile/05175203209070496384noreply@blogger.com