Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Hi , Robbie wasn't feeling very well the morning of the walk - (the wagon wouldn't fit in my car, so I ended up borrowing an umbrella stroller from a friend - and it worked very well) so he rode in the stroller for the walk. They had a swing band, and a lot of activities after the walk (face painting, balloon sculpture, etc) plus they had given the kids silly putty, so Robbie had a great time playing with Liz's daughters and Sophie (he is so cute, the night before the walk he told me that he would be able to tell them apart this time, because would have the blue cap on). A little while after the walk the motrin I had given him, along with his other meds, seemed to kick in and he was running and playing (and yes, jumping!) I turned and looked just as he was starting to jump off this bench level thing - and at first I thought to myself " he isn't going to jump off of that " and no sooner did I think it and open my mouth to say " don't " there he was mid-air. All I could get out of my mouth was " your knees! " He had a great time, and slept all the way home. A couple of hours later he was doing the arthritis shuffle and had a low grade temp. I didn't have a chance to email anyone - but on Friday the rhuemy called and said that his labs looked better (his WBC is 19 something - his sed rate is 100, and I can't remember the rest) but he thought we should wait, rather than do another pulse just yet. He said if I wanted, we could still do it, but that he seemed to be turning a corner, and we could always do it later on if we decided he wasn't progressing quickly enough. Part of me wants to just do it - we know it has helped before - but even before it was a couple of months before he was 100% - so who knows. He is much improved - though the nights like Saturday I just wonder. Our kids shouldn't have to pay so hard for playing like a kid - but then I think of all the kids here that wouldn't have been able to have done half of what Robbie did on Saturday and I feel guilty for wanting it all for him. Silly, I know. Of course we want it all for them. For now we are keeping his pred at 9 mg twice daily, his cyclosporine at .65 twice a day - and his other meds the same (zantac, calcium, lisinopril) - and I give him Motrin when needed. I hadn't had a chance yet to respond to your kind words the other day - tell Rob and the hubby that I am sending all of you a big hug! You guys are great - and thanks for adding to Robbie's fund raising. He was so proud of himself! You didn't have to do that! And you didn't need to send Rob anything - but thank you so much, he loves getting mail and will be thrilled. Well, I really have to run now - you guys take care. Val In a message dated 5/3/2004 5:26:35 PM Eastern Daylight Time, snooksmama@... writes: > > > Val: > So good to hear that Robbie was able to participate in the walk. His > picture is soooo cute. > I was just curious, also, as to what kind of adjustment that they did to > his meds. > I hope that he is feeling better! By the way, hopefully in the next day > or two I'll be mailing a little surprise for him from Rob and me. > Love, > and Rob 15 Spondy > > On Mon, 03 May 2004 17:05:01 -0400 carneyval@... writes: > Hi , > Thank you! I really enjoyed meeting you too! I think Robbie's pretty > cute too - but it is always nice to hear someone else say it! > Unfortunately, he obviously overdid it - he had a lot of pain and a low > grade fever Saturday night. It's hard to slow him down when he feels > good - but I almost fell over when he jumped off that step-like thing. > He had a pretty good day yesterday, though - but he took it pretty easy > all day too. This morning wasn't too bad, but he did have some pain and > stiffness. > I hope you are having a good day and that is feeling well. I > forgot to tell you how handsome he is when we pointed out Chris's picture > to Robbie! > Val > > In a message dated 5/2/2004 12:55:08 PM Eastern Daylight Time, > knoblefamily@... writes: > > > > > > > Val, > > It was nice meeting you at the Arthritis Walk yesterday. I > > especially enjoyed meeting your son, Robbie. He is very cute! I > > hope he wasn't in too much pain last night from all the activity. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2004 Report Share Posted May 3, 2004 Val did you or anyone get pic of Robbie riding the umbrella stand! I would really love to see and post that to rustyroom photo album...that is to Kool! HPLTA Rusty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2004 Report Share Posted May 4, 2004 Val: I mailed Robbie's package today. You should get it maybe by Saturday? I can't believe that Robbies SED rate is DOWN to 100...wow...poor kid sure does have a lot of inflammation. I'm stepping out of bounds here, but have they talked about any different drugs for him, like the newer biologicals? I was just curious if that idea had been brought up. Of course, I know that Robbie's case is different due to the MCD. Is his renal function doing ok? I will continue to keep Robbie, and you in my prayers. Love, and Rob 15 Spondy On Mon, 03 May 2004 17:37:11 -0400 carneyval@... writes: Hi , Robbie wasn't feeling very well the morning of the walk - (the wagon wouldn't fit in my car, so I ended up borrowing an umbrella stroller from a friend - and it worked very well) so he rode in the stroller for the walk. They had a swing band, and a lot of activities after the walk (face painting, balloon sculpture, etc) plus they had given the kids silly putty, so Robbie had a great time playing with Liz's daughters and Sophie (he is so cute, the night before the walk he told me that he would be able to tell them apart this time, because would have the blue cap on). A little while after the walk the motrin I had given him, along with his other meds, seemed to kick in and he was running and playing (and yes, jumping!) I turned and looked just as he was starting to jump off this bench level thing - and at first I thought to myself " he isn't going to jump off of that " and no sooner did I think it and open my mouth to say " don't " there he was mid-air. All I could get out of my mouth was " your knees! " He had a great time, and slept all the way home. A couple of hours later he was doing the arthritis shuffle and had a low grade temp. I didn't have a chance to email anyone - but on Friday the rhuemy called and said that his labs looked better (his WBC is 19 something - his sed rate is 100, and I can't remember the rest) but he thought we should wait, rather than do another pulse just yet. He said if I wanted, we could still do it, but that he seemed to be turning a corner, and we could always do it later on if we decided he wasn't progressing quickly enough. Part of me wants to just do it - we know it has helped before - but even before it was a couple of months before he was 100% - so who knows. He is much improved - though the nights like Saturday I just wonder. Our kids shouldn't have to pay so hard for playing like a kid - but then I think of all the kids here that wouldn't have been able to have done half of what Robbie did on Saturday and I feel guilty for wanting it all for him. Silly, I know. Of course we want it all for them. For now we are keeping his pred at 9 mg twice daily, his cyclosporine at ..65 twice a day - and his other meds the same (zantac, calcium, lisinopril) - and I give him Motrin when needed. I hadn't had a chance yet to respond to your kind words the other day - tell Rob and the hubby that I am sending all of you a big hug! You guys are great - and thanks for adding to Robbie's fund raising. He was so proud of himself! You didn't have to do that! And you didn't need to send Rob anything - but thank you so much, he loves getting mail and will be thrilled. Well, I really have to run now - you guys take care. Val In a message dated 5/3/2004 5:26:35 PM Eastern Daylight Time, snooksmama@... writes: > > > Val: > So good to hear that Robbie was able to participate in the walk. His > picture is soooo cute. > I was just curious, also, as to what kind of adjustment that they did to > his meds. > I hope that he is feeling better! By the way, hopefully in the next day > or two I'll be mailing a little surprise for him from Rob and me. > Love, > and Rob 15 Spondy > > On Mon, 03 May 2004 17:05:01 -0400 carneyval@... writes: > Hi , > Thank you! I really enjoyed meeting you too! I think Robbie's pretty > cute too - but it is always nice to hear someone else say it! > Unfortunately, he obviously overdid it - he had a lot of pain and a low > grade fever Saturday night. It's hard to slow him down when he feels > good - but I almost fell over when he jumped off that step-like thing. > He had a pretty good day yesterday, though - but he took it pretty easy > all day too. This morning wasn't too bad, but he did have some pain and > stiffness. > I hope you are having a good day and that is feeling well. I > forgot to tell you how handsome he is when we pointed out Chris's picture > to Robbie! > Val > > In a message dated 5/2/2004 12:55:08 PM Eastern Daylight Time, > knoblefamily@... writes: > > > > > > > Val, > > It was nice meeting you at the Arthritis Walk yesterday. I > > especially enjoyed meeting your son, Robbie. He is very cute! I > > hope he wasn't in too much pain last night from all the activity. > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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