Guest guest Posted August 4, 2008 Report Share Posted August 4, 2008 , I know this should be a phone call but I guess we are in a denial phase,just like Rob. Insurance is through the roof,gas is crazy but is once again in medicated remission. If you recall 6 months ago the day before the 300+mile trip to Cinci, asked to switch back to MTX shots due to his tummy and throwing up the pills.(He never told us) The morning stiffness went away,if it was ever there.Anyone who gets up at 5am is going to walk a bit funny for a couple of minuites. is doing great on his .5ml shot of MTX and his 1.3ml Enbrel.It's so hard to believe he spent 22 months on Prednisilone starting back in 2000,not to mention he was so bad and so textbook he got diagnosed in 21 days.He had to wait 3 weeks before even starting the MTX. He spent his summer on his 4th yr of baseball ,only this yr he moved up to the minors(kid pitch).His main position was catcher and he was great considering he is built like a linebacker.He wasn't the BIG hitter like he was in coach pitch but when he did hit the ball,he hit it.He likes it but doesn't love it like Robbie,Dave wants to play football. We did give permission to play football finaly but being so close to his b-day couldn't afford it.Turned out ok because due to his size he was considered a monster man and could not forward the ball.He is realy good at throwing a football but he would have been forced to play some sort of linebacker. His height has slacked off from the 3 " a yr that the steroids couldn't even stop but he is a good 1 " taller then his big sisters BFF who is 2yrs older. On the bad side, was diagnosed with a chronic skin disease.For years we have bean batteling with a nickle allergy and contact dermatitis and every time we seen Dr.Lovell he would get a rash from the pool water and Lovell would blame it on cooties from some girl that liked him.Well,after a yr without a pool we bought a 18'x48 " and it got infested by some tiny,orange sliver size bug.He started out with some sort of immune reaction to the bites that got worse x 10.Took him to a Derm and she knew exactly what it was,severe Atopic Dermatitis.I know it's a fancy word for Excema but it was so bad he will NOT outgrow it.We will win many battles but lose the war.We traded in a 30 gram tube of a mild steroid cream for a 1lb jar of a 2x stronger steroid.They also put him on 40mg of pred with a 9 day taper to 10mg.This Excema thing is $$$ between non soap body wash,moisturizer(VERY,VERY important)Tide free,no perfumes,dye etc.Not the Arthur but the Excema he said " I hate my life " We are currant on labs but should be makeing our second trip to Cinci.Allan says no to Vanderbuilt but he needs to be seen by someone.UGHH! Shelby starts middle school this Friday and asked me to buy her some pads,just in case, cause she's cramping real bad.She is 12yrs 7months so it's close.We talked in front of and he acted like his ears would bleed,lol He has no idea about eggs and sperm so it's daddys turn,loll,loll I'm so sorry I haven't kept in touch but we are at a point where everything arthritis is great,definately no excuse, just wants to be a normal kid with no reminders. Lots of love and hugs Becki and 10 systemic onset who outgrew the systemic but is not poly or pauci and will always be systemic onset A little OT: Update on Rob > " JRA, List " < @group s..com> > Date: Thursday, July 31, 2008, 12:53 PM > > > > > > > > > > > > Rob is moving to his apartment tomorrow! Off-campus housing is CHEAPER at IUPUI than on-campus (they have no upperclassmen dorms, just apartments). He lived in the Freshman dorm last year and loved it. He will be about 15 minutes from campus. He got his job at Target (he's been there 3 years) transferred and the Target store is only 3 miles from his apartment! He can save on gas or even ride his bike to work!! > > We went back to the pediatric cardiologist today. As many of you > know, he had his pectus repair done last June (his sternum was > malformed and as he grew, was compressing his heart and lungs). > It was a very painful operation but with usual Rob style and > courage, he came thru just fine. He had not been back to the > cardiologist since before the surgery. The cardiologist was > impressed with the way his chest came out (it looks beautiful) > and the best news of all, the mitral regurgitation (valve is > floppy) is GREATLY improved! So much so that he no longer has to > take antibiotics before dental procedures!! The surgery helped > in that it relieved the pressure on his heart which was making a > minor issue much worse. So he is doing just great! The > cardiologist does want to see him back next year after they take > the pectus bar out, to make sure that things stay in place and > his heart is still doing great once the bar is gone. We were > both so excited, one less problem > for dear Rob!! > > PS I had my big cry last night about him leaving again but this > news today certainly gave me a new outlook. Besides, he is only > 2 hours away! I am planning on visiting him next week on my day off! > > > > Quote Link to comment Share on other sites More sharing options...
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