one tough cookie
yesterday carson and i spent the day at egleston (children's healthcare of atlanta) meeting with our new rheumatologist. yes, we now have our very own arthritis specialist. we were at the front doors of egleston at 8 am sharp ready to tackle whatever she had to tell us. and she had a lot. it really was a lot to take in. basically, what we thought was some arthritis in his right knee and possibly his right thumb turned out to be arthritis in just about all of his joints. including his spine. um, excuse me? oh, and from looking at his mri and doing some quick ultrasounds of his hands and knees it looks like he has had it for "some time now." like a lot longer than the 6 weeks we have been dealing with all of this. annnnnd enter mom guilt. how in the world could we of not noticed this before hand? how has this 9 year old boy been dealing with all this pain without so much as uttering a single complaint? how? why? these were all the things that smacked me in the face as i'm listening to this doctor go over our treatment plan. our short term and long term plans for battling whatever it is that is attacking all of his skinny little joints.
so what is the long and the short of it? well we have started him on an oral steroid to take care of any immediate pain, which in the last few days has really been his knee and his neck. we upped his aleve dosage, we added a once a week injection that we administer at home (eek!) for long term maintenance of his immune system attacking his joints, because we are lowering his immune system we have to battle that with some folic acid and because he is now on so much medicine we are treating his stomach with some zantac. and then once we get back from spring break we will see our cousin kelley so that she can give him some steroid shots in his knees to really knock out the inflammation. it's all a bit overwhelming but we will master it and if i know carson he'll do it with a smile and probably in a batman costume. because let's face it. everything is easier when you are pretending to be batman.
i gave him his first injection tonight...it went as well as you can image it would with a kid who is terrified of shots and needles. we explained what was happening, why we had to do it and that it would be over with soon (till the next week, but we left that out for now). as i was in the middle of poking him with the syringe he's yelling at me, "why would you do this to me? why?" annnnnnd more mom guilt. it breaks my heart that this sweet, kind, loving, strong, amazing miracle has to go through all of this. and to top it all off, this has nothing, absolutely nothing to do with any of his other medical issues. this is totally random, genetic and the way his cards fell. an autoimmune disease. i'm not sure of the plan god has for this kid and the paths he has to take but it better be something amazing. this is reaching the point of too much. but, how does he handle it all? with a smile and a laugh. and how do andrew and i make the tears go away? dessert for dinner! whatever his little heart desired. and the silver lining to all of this is that just after one day of the oral steroid he was 75% back to his old self. i watched him walk on his own to the car after school and nearly fell on the ground. for 6 weeks i have had to literally fully support him as he tried to walk anywhere. he has been dragging himself around the house not even being able to get to the bathroom on his own. it was heart breaking and nothing was working, but seeing him today makes me believe that this too shall pass...it may come back but we know how to beat it for now. but just seeing him be able to actually move around on his own is a miracle in itself.
i gave him his first injection tonight...it went as well as you can image it would with a kid who is terrified of shots and needles. we explained what was happening, why we had to do it and that it would be over with soon (till the next week, but we left that out for now). as i was in the middle of poking him with the syringe he's yelling at me, "why would you do this to me? why?" annnnnnd more mom guilt. it breaks my heart that this sweet, kind, loving, strong, amazing miracle has to go through all of this. and to top it all off, this has nothing, absolutely nothing to do with any of his other medical issues. this is totally random, genetic and the way his cards fell. an autoimmune disease. i'm not sure of the plan god has for this kid and the paths he has to take but it better be something amazing. this is reaching the point of too much. but, how does he handle it all? with a smile and a laugh. and how do andrew and i make the tears go away? dessert for dinner! whatever his little heart desired. and the silver lining to all of this is that just after one day of the oral steroid he was 75% back to his old self. i watched him walk on his own to the car after school and nearly fell on the ground. for 6 weeks i have had to literally fully support him as he tried to walk anywhere. he has been dragging himself around the house not even being able to get to the bathroom on his own. it was heart breaking and nothing was working, but seeing him today makes me believe that this too shall pass...it may come back but we know how to beat it for now. but just seeing him be able to actually move around on his own is a miracle in itself.
on a side note, our school, buford academy, has been beyond accommodating with us these past few weeks. from the ladies at the front desk, to his teachers and administrators we have been more than blessed. what an amazing community to be a part of. i cannot tell you how many times a day i hear someone, be it adult or student, yell out carson's name and it warms my heart to see just how much of a family this system has been. #itsgreattobeabufordwolf
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